I think I mentioned before, I used to run the mile race. It’s 4 laps around a track.
Imagine running a sprint and just hold back a bit. That’s how fast it is. It’s a tough race.
You feel like hell on the back stretch of lap 3, but there would always be someone like
your coach to cheer you on. That’s how I feel right now. You see, they, my therapists,
decided I have plateaued. I will no longer receive physical therapy and occupational
therapy from my main hospital. This is their decision. It’s like getting to the back stretch
of lap 3 in the mile and no one being there to help you. I guess my profound thought of
the day would be: A mistake not corrected is a mistake learned.
At the moment, I’m really angry because I can stay at home and practice what they taught
me, but I may make mistakes. If you make a mistake in your training, and you do it over
and over again for months it could hurt you, set you back. I need to go to therapy. Not
only to guide me, but also for them to educate me. It seems crazy to me. It doesn’t make
sense, but then again, look at my situation. What makes sense?
It’s ironic that we talk about therapy like this because it was a year ago this week that
I came home. I look back at that time, I was a mess. I’ve gotten better. I guess next
year I be even better. But I need therapy. I have traumatic brain injury. It’s very slow
long drawn out healing process. I wonder if the insurance for therapy takes this into
consideration. Anyway, my friend whose typing this, and I agree, one door closes,
another opens. I’ll just find another place to do therapy. But it doesn’t make sense
because my old place knows me. I said, whose decision is it? I could understand if I
really had plateau’d, but I feel I’m getting better. I really believe it. It’s just so damn
slow. And they said it’s up to the therapist. I don’t get it. They do set goals, but they
said I’ve reached all their goals. No one’s asked me. I have some goals. I’d like to walk
again. I’d like to feed myself again. I’d like to take pictures and all that is starting to
happen. With the therapists help I walk with other people help I feed myself. With other
people’s help I take photos, but I know I can do it by myself. OK. I’ll put away my soap
box now, step down and be quiet. I’m just pissed off. But you know what, sometimes
when you get pissed off, it puts fire under your ass. You get angry and you work harder.
I’m going to end on a positive note. It’s almost Christmas. There’s such a good vibe
going around. I went to my father’s church the other day and my friend was singing with
the choir. The same person that’s typing this for me. She sounded beautiful. It was a
nice and welcome break from the monotony of my world. Merry Christmas everyone.
I’ll talk to you in a few weeks. Love, B. Nice
Tuesday, December 20, 2011
Tuesday, December 13, 2011
Chapter 30 – December 13, 2011
I remember what Winston Churchill once said, “When you’re going through Hell, keep
going.” That’s my mantra.
My cousin suggested I break this down into operations, etc. But, I have a hard time
remembering everything. It all blends together. The first operation on my brain. The
second operation on my brain. They all blend together. One thing for sure is, the second
operation was more invasive. My life right now is difficult.
I am making progress and I am getting better, but it’s very slow. They have me walking
in therapy, but they are starting to limit my time there. It seems I’ve met the goals they
set forward. All insurance stuff. You have to make sure you know how to work the
system. Make your own goal. Take charge. Make sure you’ll get as much therapy as
you can get. It seems like the system is like a cookie cutter. They try to bunch everyone
up. Each person is different. I need more than average help. I’ll keep fighting for
therapy cause it does help me. Bottom line is, don’t take no for an answer. Fight for
your right to have therapy and get better.
Sometimes I’m glad I didn’t know then what I know now. If I knew how hard this was
going to be, I don’t think I would have survived. I would have possibly given up hope.
Who knows?
My friend just asked me what keeps me going now. I guess I would have to say, my little
one, and my love for photography. And the prospect of getting better. I do get bummed
though. I see some people that will never ever get better. They’ve been severely
cognitively and physically damaged. Ignorance is bliss. They’re not aware of how bad
they are. As a matter of fact, they seem happy. I just feel bad for them. I differentiate
myself from them, but I do sympathize with them. I just got a little lucky, that’s all.
Let’s see, my profound thought of the week would be: Ignorance is bliss.
Sometimes it’s better not to be aware of what’s really going on. I always hear my
grandmother’s voice saying, “Don’t borrow trouble.” Talk to you next week. B. Nice.
going.” That’s my mantra.
My cousin suggested I break this down into operations, etc. But, I have a hard time
remembering everything. It all blends together. The first operation on my brain. The
second operation on my brain. They all blend together. One thing for sure is, the second
operation was more invasive. My life right now is difficult.
I am making progress and I am getting better, but it’s very slow. They have me walking
in therapy, but they are starting to limit my time there. It seems I’ve met the goals they
set forward. All insurance stuff. You have to make sure you know how to work the
system. Make your own goal. Take charge. Make sure you’ll get as much therapy as
you can get. It seems like the system is like a cookie cutter. They try to bunch everyone
up. Each person is different. I need more than average help. I’ll keep fighting for
therapy cause it does help me. Bottom line is, don’t take no for an answer. Fight for
your right to have therapy and get better.
Sometimes I’m glad I didn’t know then what I know now. If I knew how hard this was
going to be, I don’t think I would have survived. I would have possibly given up hope.
Who knows?
My friend just asked me what keeps me going now. I guess I would have to say, my little
one, and my love for photography. And the prospect of getting better. I do get bummed
though. I see some people that will never ever get better. They’ve been severely
cognitively and physically damaged. Ignorance is bliss. They’re not aware of how bad
they are. As a matter of fact, they seem happy. I just feel bad for them. I differentiate
myself from them, but I do sympathize with them. I just got a little lucky, that’s all.
Let’s see, my profound thought of the week would be: Ignorance is bliss.
Sometimes it’s better not to be aware of what’s really going on. I always hear my
grandmother’s voice saying, “Don’t borrow trouble.” Talk to you next week. B. Nice.
Wednesday, December 7, 2011
Chapter 29 – December 7, 2011
My friend was reading my last blog I did. I mentioned having friends is
important. It’s so important to have someone look over you. I’m lucky to
have my family and friends. I would say that the most important thing is you
have someone look after you. So many people slip through the cracks. So
many people abuse the system. I’ve seen some horrible things. But we won’t
talk about that now. That could be another story in itself.
I’m sorry. I got upset. When you’re in the hospital for over 2 years, you see
some crazy stuff. Stuff that changes your life. Stuff that makes you think
twice about things. Not much to say, but it’s very sad. Just make sure the
one you love has someone to look over them.
Remember, the other important thing is to look at things on a positive note.
It’s so important to think positive all the time. Today, here is a gloomy day,
but I just think it’s sunshine. You gotta do something that makes you happy.
Stay positive.
Today, at therapy, they did a refresher course on swallowing water. They
electrify the muscles in your neck, which helps you to swallow. It’s a bit
uncomfortable, but it seems to work. I’ll do this for 2 weeks and they’ll give
me a swallow test. It’s kind of cool, and it seems to work. The other thing
they did at therapy was more strength building exercises. This helps me
get stronger and get better. One thing the therapist said was don’t work
too hard. Make sure you take time to rest. It’s important to let the body
regenerate. I have to pay attention to this as I tend to over do it.
It was cool the other day. Some friends came by and they gave me an iPad.
They had all chipped in and they bought me an iPad. They put applications
and games, etc., on it. It’s a little advanced for me right now, but it will help
later. It was a cool thing they did. It will help me get better for sure.
I’m sitting here trying to remember something important I was going to tell
you. For the most part, I have a very good memory. But, it seems to go in
and out right now, sometimes.
I have a good shrink. She came by today to see how I was doing. It’s
important to have someone like this in your life. She said I was doing well. I
don’t take any happy pills or any anti-depressants. It’s only natural to be sad
when you go through something like this. I have my moments of course. But
I stay happy and positive for the most part.
I did remember one thing. I talked a little about it the last blog. It’s a
little word called frustration. I get so frustrated. As I’m basically trapped
in my own body. I would love to go for a run, pick up the phone and talk to
friends. Anything to break up the routine. What can I say. Frustration is
huge right now. My friend reminded me, it’s a new stage I’m going through.
I guess it’s good. Look at it in a positive way. I can almost do what I want,
but I can’t quite do it. I’ve been standing a lot and I’m walking at therapy.
These are all important things. But I still get frustrated. I still find it
amazing I can run a sub four minute mile, and yet I can’t walk down the hall
right now. (I used to run a sub 4 minute mile.) I can’t remember what I was
going to talk to you about. Just stay positive. That’s all I do when I get
frustrated. I try to think positive. I’ll never forget what a nurse once said
to me. Take a gray day and make it blue. I’ll talk to you guys next week.
Love, B. Nice
important. It’s so important to have someone look over you. I’m lucky to
have my family and friends. I would say that the most important thing is you
have someone look after you. So many people slip through the cracks. So
many people abuse the system. I’ve seen some horrible things. But we won’t
talk about that now. That could be another story in itself.
I’m sorry. I got upset. When you’re in the hospital for over 2 years, you see
some crazy stuff. Stuff that changes your life. Stuff that makes you think
twice about things. Not much to say, but it’s very sad. Just make sure the
one you love has someone to look over them.
Remember, the other important thing is to look at things on a positive note.
It’s so important to think positive all the time. Today, here is a gloomy day,
but I just think it’s sunshine. You gotta do something that makes you happy.
Stay positive.
Today, at therapy, they did a refresher course on swallowing water. They
electrify the muscles in your neck, which helps you to swallow. It’s a bit
uncomfortable, but it seems to work. I’ll do this for 2 weeks and they’ll give
me a swallow test. It’s kind of cool, and it seems to work. The other thing
they did at therapy was more strength building exercises. This helps me
get stronger and get better. One thing the therapist said was don’t work
too hard. Make sure you take time to rest. It’s important to let the body
regenerate. I have to pay attention to this as I tend to over do it.
It was cool the other day. Some friends came by and they gave me an iPad.
They had all chipped in and they bought me an iPad. They put applications
and games, etc., on it. It’s a little advanced for me right now, but it will help
later. It was a cool thing they did. It will help me get better for sure.
I’m sitting here trying to remember something important I was going to tell
you. For the most part, I have a very good memory. But, it seems to go in
and out right now, sometimes.
I have a good shrink. She came by today to see how I was doing. It’s
important to have someone like this in your life. She said I was doing well. I
don’t take any happy pills or any anti-depressants. It’s only natural to be sad
when you go through something like this. I have my moments of course. But
I stay happy and positive for the most part.
I did remember one thing. I talked a little about it the last blog. It’s a
little word called frustration. I get so frustrated. As I’m basically trapped
in my own body. I would love to go for a run, pick up the phone and talk to
friends. Anything to break up the routine. What can I say. Frustration is
huge right now. My friend reminded me, it’s a new stage I’m going through.
I guess it’s good. Look at it in a positive way. I can almost do what I want,
but I can’t quite do it. I’ve been standing a lot and I’m walking at therapy.
These are all important things. But I still get frustrated. I still find it
amazing I can run a sub four minute mile, and yet I can’t walk down the hall
right now. (I used to run a sub 4 minute mile.) I can’t remember what I was
going to talk to you about. Just stay positive. That’s all I do when I get
frustrated. I try to think positive. I’ll never forget what a nurse once said
to me. Take a gray day and make it blue. I’ll talk to you guys next week.
Love, B. Nice
Tuesday, November 29, 2011
Chapter 28 – November 29, 2011
So I hope you can understand me. I hope my friend who’s typing this can
understand me. You see I had a slight set-back. The first time they
operated on me, they had to go in an area near my right ear. It’s an area
that causes seizures. So now, I’m on medication to prevent seizures. It
seems I have to increase my medication because I’m starting to have
seizures again. I had one the other day. Imagine having a computer then
imagine dropping it. Imagine starting up, finding it doesn’t work properly.
This is what the brain is like right now. My brain is like a computer that’s
been dropped. But, by increasing my medication, just a little, it seems to
help. You see, before I had a full on seizure I would have a warning sign.
They would call it that I would see an aura. I would see primary colors and
shadows. My right eye would go numb. My left leg would go numb. There
would be no pain, but I knew I was about to have a seizure. Fun. Huh huh.
Never a dull moment.
Anyway, the major seizure did no damage. It’s just like a short circuit or
the brain rebooting. I am left with a slight difficulty in speaking. Like I
said before, there’s always something.
I’ve got to keep moving forward. You’ll have small set-backs, but you’ve got
to keep working. I was reminded of this when my little one came to visit.
This small child is a big influence on me getting better. I guess you could
say, she is my driving force and reason to get better. She was here for a
week and it was fun, but boy was I tired. Five and fifty don’t mix. Anyway,
it’s a good reminder as to why I’m still here.
What I’d really like to talk to you guys about is a small word called
frustration. You can’t imagine how frustrating this is. OK. I’m just gonna
have a little bitch session right now and complain. You see, my face, arms,
hands, chest, my whole body is tight. And I shake. It’s a pain in the ass.
I can feed myself, but I shake so much I end up stabbing myself with the
fork. Man, I just want a piece of bread and I can’t do it sometimes. I’m
getting skinny and my dog’s getting fat. There’s a country song for you.
My dog looks up at me, I finally figured out, what he said to me. Shake you
bastard, shake. Drop that food. Never a dull moment. I did manage to eat
my food the other day and I felt very proud of myself. It’s just a first step
in a long journey. It does get frustrating though, cause I get so hungry. Yet
I can’t get the food to my mouth. It’s good incentive. That’s for sure. We
take the little things for granted.
My neighbor stopped by the other day. She stopped by to say hi and also to
tell me a little story. She is a survivor of Traumatic Brain Injury. 15 years
ago, she was in a bad car accident. Looking at her now, you’d never know it.
She came by to remind me that I will get better one day. It won’t be the
same as before, but I’ll be better than I am now. She reminded me I have
to think about other ways of living. I’ve adapted to change many times in my
life. Major change. This will just be another example of major change. I’m
not sure where I’m going, but I’m getting there. I can feel it. I’m not sure
if this makes sense, but I do feel a major change coming. Wait, let’s review
that. Let’s see. I had a brain hemorrhage. I had seven operations. Two of
them brain surgeries. I’m divorced. My dog died in my arms. I live at home
with my parents. I can’t quite see, yet I’m a photographer. I can’t run and
I’m a runner. Change? Yeah, I guess that would be change. Yes. All of the
above is change. Now I have to adapt. Piece of cake.
Just as I was finishing up, my friends called me via Skype from Paris. How
cool is that? It was a nice distraction. Reminds me once again how I have
many great friends. I’d like to visit one day, but for now, it’s work. I’ll talk
to you guys next week. B. Nice
understand me. You see I had a slight set-back. The first time they
operated on me, they had to go in an area near my right ear. It’s an area
that causes seizures. So now, I’m on medication to prevent seizures. It
seems I have to increase my medication because I’m starting to have
seizures again. I had one the other day. Imagine having a computer then
imagine dropping it. Imagine starting up, finding it doesn’t work properly.
This is what the brain is like right now. My brain is like a computer that’s
been dropped. But, by increasing my medication, just a little, it seems to
help. You see, before I had a full on seizure I would have a warning sign.
They would call it that I would see an aura. I would see primary colors and
shadows. My right eye would go numb. My left leg would go numb. There
would be no pain, but I knew I was about to have a seizure. Fun. Huh huh.
Never a dull moment.
Anyway, the major seizure did no damage. It’s just like a short circuit or
the brain rebooting. I am left with a slight difficulty in speaking. Like I
said before, there’s always something.
I’ve got to keep moving forward. You’ll have small set-backs, but you’ve got
to keep working. I was reminded of this when my little one came to visit.
This small child is a big influence on me getting better. I guess you could
say, she is my driving force and reason to get better. She was here for a
week and it was fun, but boy was I tired. Five and fifty don’t mix. Anyway,
it’s a good reminder as to why I’m still here.
What I’d really like to talk to you guys about is a small word called
frustration. You can’t imagine how frustrating this is. OK. I’m just gonna
have a little bitch session right now and complain. You see, my face, arms,
hands, chest, my whole body is tight. And I shake. It’s a pain in the ass.
I can feed myself, but I shake so much I end up stabbing myself with the
fork. Man, I just want a piece of bread and I can’t do it sometimes. I’m
getting skinny and my dog’s getting fat. There’s a country song for you.
My dog looks up at me, I finally figured out, what he said to me. Shake you
bastard, shake. Drop that food. Never a dull moment. I did manage to eat
my food the other day and I felt very proud of myself. It’s just a first step
in a long journey. It does get frustrating though, cause I get so hungry. Yet
I can’t get the food to my mouth. It’s good incentive. That’s for sure. We
take the little things for granted.
My neighbor stopped by the other day. She stopped by to say hi and also to
tell me a little story. She is a survivor of Traumatic Brain Injury. 15 years
ago, she was in a bad car accident. Looking at her now, you’d never know it.
She came by to remind me that I will get better one day. It won’t be the
same as before, but I’ll be better than I am now. She reminded me I have
to think about other ways of living. I’ve adapted to change many times in my
life. Major change. This will just be another example of major change. I’m
not sure where I’m going, but I’m getting there. I can feel it. I’m not sure
if this makes sense, but I do feel a major change coming. Wait, let’s review
that. Let’s see. I had a brain hemorrhage. I had seven operations. Two of
them brain surgeries. I’m divorced. My dog died in my arms. I live at home
with my parents. I can’t quite see, yet I’m a photographer. I can’t run and
I’m a runner. Change? Yeah, I guess that would be change. Yes. All of the
above is change. Now I have to adapt. Piece of cake.
Just as I was finishing up, my friends called me via Skype from Paris. How
cool is that? It was a nice distraction. Reminds me once again how I have
many great friends. I’d like to visit one day, but for now, it’s work. I’ll talk
to you guys next week. B. Nice
Tuesday, November 15, 2011
Chapter 27 – November 15, 2011
Sorry to miss a week. I went somewhere. I’m not sure where, but it went
by really quick. I got an email from a friend of mine. It was pretty cool. He
finished a New York City Marathon and he said that he was inspired by my
hard work. It kept him going just thinking about what I was going through.
Basically helped him through the race thinking about my situation. I’m glad I
could help out and glad he finished the marathon.
You see, when you’re in a state like this, Traumatic Brain Injury, having
friends support you is really important. You’re constantly keeping evil
thinking at bay. And to get positive reinforcement is really helpful. Just
having a friend send an email or stop by really helps you mentally. Friends
are very important. I’m lucky to have many great friends.
One reason why I skipped a week was because I went to Mauntauk to get my
surf boards and windsurfing equipment. I was once again reminded that I
have great friends. They all helped out and got my boards out of storage.
My one friend said to me, “Man, you got a problem!” Because I have 16
boards. No one really understands unless they surf and windsurf. There is
a different board for each condition. There’s boards for big waves, boards
for small waves, etc., etc. It was a fun road trip. An old friend helped me
out and drove me out there along with my mother. I stayed at a hotel on
the beach, just down from the house I built. Was a great road trip. A much
needed escape from therapy. Remember, life is therapy.
Speaking of therapy, I just found out they are going to limit my occupational
therapy. That’s basically therapy from the waist up. It’s kind of good new/
bad news. I think I do better when I have more therapy. It kind of fine
tunes you. Sure I could do what is done in therapy, but it helps to go there.
And besides, it’s nice to get out of the house and talk to other people.
My mom’s been reading to me. Cause I can’t really see in single form yet. It
still shakes. It’s very difficult to read. Anyway, she’s reading to me a book
written by a family friend, an artist named Chuck Close. I strongly advise
you read the book. It’s good. Man, that guy went through hell. At the
moment, the most important thing I get from it and after talking to him, the
most important thing is do what you love to do. He loves to paint, so painting
got him through the tough times. I love photography. I still do photography
to get me through the tough times. Do what you love.
One thing I’m doing, I would strongly suggest you do when you’re in this
situation, each day goes by slowly. And they all blend together. It’s hard
to see any difference and change. It’s hard to see yourself getting better.
I strongly advise you have someone videotape you, just talking, maybe
once a month. I’m doing this right now. I had my old assistant come up
and videotape me. Just having a chat. It will show your improvement and
encourage you. That’s all for now. I’ll talk to you guys next week. B. Nice
by really quick. I got an email from a friend of mine. It was pretty cool. He
finished a New York City Marathon and he said that he was inspired by my
hard work. It kept him going just thinking about what I was going through.
Basically helped him through the race thinking about my situation. I’m glad I
could help out and glad he finished the marathon.
You see, when you’re in a state like this, Traumatic Brain Injury, having
friends support you is really important. You’re constantly keeping evil
thinking at bay. And to get positive reinforcement is really helpful. Just
having a friend send an email or stop by really helps you mentally. Friends
are very important. I’m lucky to have many great friends.
One reason why I skipped a week was because I went to Mauntauk to get my
surf boards and windsurfing equipment. I was once again reminded that I
have great friends. They all helped out and got my boards out of storage.
My one friend said to me, “Man, you got a problem!” Because I have 16
boards. No one really understands unless they surf and windsurf. There is
a different board for each condition. There’s boards for big waves, boards
for small waves, etc., etc. It was a fun road trip. An old friend helped me
out and drove me out there along with my mother. I stayed at a hotel on
the beach, just down from the house I built. Was a great road trip. A much
needed escape from therapy. Remember, life is therapy.
Speaking of therapy, I just found out they are going to limit my occupational
therapy. That’s basically therapy from the waist up. It’s kind of good new/
bad news. I think I do better when I have more therapy. It kind of fine
tunes you. Sure I could do what is done in therapy, but it helps to go there.
And besides, it’s nice to get out of the house and talk to other people.
My mom’s been reading to me. Cause I can’t really see in single form yet. It
still shakes. It’s very difficult to read. Anyway, she’s reading to me a book
written by a family friend, an artist named Chuck Close. I strongly advise
you read the book. It’s good. Man, that guy went through hell. At the
moment, the most important thing I get from it and after talking to him, the
most important thing is do what you love to do. He loves to paint, so painting
got him through the tough times. I love photography. I still do photography
to get me through the tough times. Do what you love.
One thing I’m doing, I would strongly suggest you do when you’re in this
situation, each day goes by slowly. And they all blend together. It’s hard
to see any difference and change. It’s hard to see yourself getting better.
I strongly advise you have someone videotape you, just talking, maybe
once a month. I’m doing this right now. I had my old assistant come up
and videotape me. Just having a chat. It will show your improvement and
encourage you. That’s all for now. I’ll talk to you guys next week. B. Nice
Tuesday, November 1, 2011
Chapter 26 - November 1, 2011
I guess my profound thought of the week would be, take it slow and
controlled. That's what my therapists say. In therapy this week I walked
with an Arteo harness and walker. It felt great to walk. Each step is
thought out, planned and executed. Slow and controlled. It's amazing to
me, I ran across America, yet, here I am just barely making it down the
hall. I guess both are achievements and marathons in their own right - long
distance runs.
This week was a crazy week. We had record snowfall on leaves that were
just turning. It was the week before Halloween. The event caused a lot of
branches to break, trees to fall and power lines to tumble. There were
blackouts everywhere. Including our home. We still don't' have any power
and it's been almost a week. My family has cabin fever. My mother and
father are like cats and dogs. I try to be a fly on the wall. Never a dull
moment, and yes, life is stranger than fiction.
The County people from Medicaid stopped by to pay a visit. I guess they
come by once in a while to check up on me. A friend from Helen Hayes also
stopped by. He was in the same room as I. Was good to see them. And it
was also good to hear them say, "Boy, you sure have improved." It's great to
get some reassuring news. It's like I said before, when you run a race and
there are people cheering you on, you're gonna run better. I just thought
I'd share that with you.
Oh, by the way, my friend with whom I shared a room, he had an aneurysm.
He is so much better, you would never know he had a problem. He was in a
bad way when I saw him last. Remarkable what therapy can do to help you
get better. The first time I saw him he looked like a wild man from Borneo -
crazy eyes, crazy beard, crazy hair, pissing all over himself and having a
great time. Whenever he'd get a little cocky, I'd remind him of that
moment. We talked about our room. It was great. We had him, he's
Jewish. Next to him was a Black Panther. The guy next to me was an Italian
Catholic drug addicct. The there's me. I don't know what I am. I guess I'd
be a wasp. But I just called them by their names. One thing we did have in
common was, we were all messed up.
Now for my introspective thought of the week: I have Traumatic Brain
Injury and we have no power. This is not a good combination. I felt so
helpless all week. If something were to happen to me, I'd have no way of
getting a hold of anyone. The cell phone works, but I can hardly hold it. I
was on our porch the first day of the storm listening to branches break and
trees falling. That's kind of how I fell. I wish I could help out or build a
fire, help my dad carry wood, help my mom cook. I can't help at all. It's a
feeling of helplessness. Well, soon the power will come on. We'll get heat
back. Lights back. Everything will get back to normal. I guess it's kind of
like me. I guess I can't wait for my power to come back. That's OK. I've
had a lot of time to think.
The last thing I'd like to say is, I think more attention should be given to
our caregivers. For example, my mother, father, sister, cousin and friends.
They've all spent valuable time taking care of me. Yet they get no financial
support. I could easily become a ward of the state or just dump myself in
some institution run by the State. The system works, but it needs some
tune up. Something is not right.
Anyway, it doesn't make sense that there's people out there who need help
and there's people willing to help, but there's a disconnect between the
two. OK, I'll get off my soapbox. That's it for now because I have no more
to say and my friend, Julie, is writing this. Remember, we have no power.
See you next week. B. Nice
controlled. That's what my therapists say. In therapy this week I walked
with an Arteo harness and walker. It felt great to walk. Each step is
thought out, planned and executed. Slow and controlled. It's amazing to
me, I ran across America, yet, here I am just barely making it down the
hall. I guess both are achievements and marathons in their own right - long
distance runs.
This week was a crazy week. We had record snowfall on leaves that were
just turning. It was the week before Halloween. The event caused a lot of
branches to break, trees to fall and power lines to tumble. There were
blackouts everywhere. Including our home. We still don't' have any power
and it's been almost a week. My family has cabin fever. My mother and
father are like cats and dogs. I try to be a fly on the wall. Never a dull
moment, and yes, life is stranger than fiction.
The County people from Medicaid stopped by to pay a visit. I guess they
come by once in a while to check up on me. A friend from Helen Hayes also
stopped by. He was in the same room as I. Was good to see them. And it
was also good to hear them say, "Boy, you sure have improved." It's great to
get some reassuring news. It's like I said before, when you run a race and
there are people cheering you on, you're gonna run better. I just thought
I'd share that with you.
Oh, by the way, my friend with whom I shared a room, he had an aneurysm.
He is so much better, you would never know he had a problem. He was in a
bad way when I saw him last. Remarkable what therapy can do to help you
get better. The first time I saw him he looked like a wild man from Borneo -
crazy eyes, crazy beard, crazy hair, pissing all over himself and having a
great time. Whenever he'd get a little cocky, I'd remind him of that
moment. We talked about our room. It was great. We had him, he's
Jewish. Next to him was a Black Panther. The guy next to me was an Italian
Catholic drug addicct. The there's me. I don't know what I am. I guess I'd
be a wasp. But I just called them by their names. One thing we did have in
common was, we were all messed up.
Now for my introspective thought of the week: I have Traumatic Brain
Injury and we have no power. This is not a good combination. I felt so
helpless all week. If something were to happen to me, I'd have no way of
getting a hold of anyone. The cell phone works, but I can hardly hold it. I
was on our porch the first day of the storm listening to branches break and
trees falling. That's kind of how I fell. I wish I could help out or build a
fire, help my dad carry wood, help my mom cook. I can't help at all. It's a
feeling of helplessness. Well, soon the power will come on. We'll get heat
back. Lights back. Everything will get back to normal. I guess it's kind of
like me. I guess I can't wait for my power to come back. That's OK. I've
had a lot of time to think.
The last thing I'd like to say is, I think more attention should be given to
our caregivers. For example, my mother, father, sister, cousin and friends.
They've all spent valuable time taking care of me. Yet they get no financial
support. I could easily become a ward of the state or just dump myself in
some institution run by the State. The system works, but it needs some
tune up. Something is not right.
Anyway, it doesn't make sense that there's people out there who need help
and there's people willing to help, but there's a disconnect between the
two. OK, I'll get off my soapbox. That's it for now because I have no more
to say and my friend, Julie, is writing this. Remember, we have no power.
See you next week. B. Nice
Tuesday, October 25, 2011
Chapter 25 – October 24, 2011
I’d like to tell you about a very strange dream I had. You see, when one door closes,
sometimes another opens. My dream was this: I was standing in a room and a door
opened. It opened to a nice starry sky, with the ocean. I cast a rope line towards the
water and a white hand came up and pulled out a person and that person was there to help
me. And then I woke up. How weird is that? And no it wasn’t Michael Jackson, but
there was a white hand. Anyway, I just thought I’d share that with you.
Here’s my profound thought of the week: When you are on a commercial airplane, they
advise you to put on your oxygen mask before you put on your child’s. This is so you
can stablize yourself so you may assist your child. That’s kind of how I feel. I feel like
I have to get myself better so I can help my child. This is why I work so hard. Maybe
too much. I seem to be tired all the time. But, there’s no other option. Sure I could sit
around and watch TV all day, but therapy is much more important.
I was talking to my friend who’s writing this for me. We were talking about rest. I do
work so hard almost every day. They do advise me at the hospital to take one day off
every week. Rest. Sleep. Whatever. Spend time alone. I usually take Sunday or the
weekend to chill out. Rest is as important as working out. Your body will heal with rest.
It’s just my perspective. I feel better when I rest. I always take a nap in the afternoon
about an hour and I go to bed around 9:30. Wake up at 7:00. Lately, I’ve been waking
up in the middle of the night. Staring at the ceiling. Sometimes it’s hard to get back to
sleep. Remember what I said before. Never think too much.
My niece and nephews live right next door with my sister. I often see them play soccer.
I really wish I could join them and play. When I see them kicking the ball, I often
imagine kicking the ball. That’s got to be good for me. Either way, I wish I could play.
I feel like an old man, and I’m only 50. What a drag.
On a happier note, I’ve been skyping with my little one. It’s almost Halloween so I put
on different outfits when I see her. The reaction is fantastic. She stops what she’s doing
and she goes, “Daddy, is that you? You’re so silly.” She’s 25, just kidding. She’s 4
and ½. Almost 5. Once again, I’ll miss Halloween with her, but it’s great to see her on
skype.
Just one last thing. My aunt and uncle came by. They’re from Minnesota. They came
to stay for a few days. It reminded me how important family is. With their support, my
sister’s and my mother and father, I have been getting better. Family is so important.
This is kind of corny, but I’d like to share something with you. When I was in intensive
care I had them play reggae over and over and over again. It’s got the same beat as the
human heart. But I remember one lyric that stood out all the time. It was from a song
that Bob Marley did. It goes, “In life there’s lots of grief, but your love is my relief.”
Sometimes all you need is a hug or someone to hold your hand. That’s it. See you next
week. B. Nice
sometimes another opens. My dream was this: I was standing in a room and a door
opened. It opened to a nice starry sky, with the ocean. I cast a rope line towards the
water and a white hand came up and pulled out a person and that person was there to help
me. And then I woke up. How weird is that? And no it wasn’t Michael Jackson, but
there was a white hand. Anyway, I just thought I’d share that with you.
Here’s my profound thought of the week: When you are on a commercial airplane, they
advise you to put on your oxygen mask before you put on your child’s. This is so you
can stablize yourself so you may assist your child. That’s kind of how I feel. I feel like
I have to get myself better so I can help my child. This is why I work so hard. Maybe
too much. I seem to be tired all the time. But, there’s no other option. Sure I could sit
around and watch TV all day, but therapy is much more important.
I was talking to my friend who’s writing this for me. We were talking about rest. I do
work so hard almost every day. They do advise me at the hospital to take one day off
every week. Rest. Sleep. Whatever. Spend time alone. I usually take Sunday or the
weekend to chill out. Rest is as important as working out. Your body will heal with rest.
It’s just my perspective. I feel better when I rest. I always take a nap in the afternoon
about an hour and I go to bed around 9:30. Wake up at 7:00. Lately, I’ve been waking
up in the middle of the night. Staring at the ceiling. Sometimes it’s hard to get back to
sleep. Remember what I said before. Never think too much.
My niece and nephews live right next door with my sister. I often see them play soccer.
I really wish I could join them and play. When I see them kicking the ball, I often
imagine kicking the ball. That’s got to be good for me. Either way, I wish I could play.
I feel like an old man, and I’m only 50. What a drag.
On a happier note, I’ve been skyping with my little one. It’s almost Halloween so I put
on different outfits when I see her. The reaction is fantastic. She stops what she’s doing
and she goes, “Daddy, is that you? You’re so silly.” She’s 25, just kidding. She’s 4
and ½. Almost 5. Once again, I’ll miss Halloween with her, but it’s great to see her on
skype.
Just one last thing. My aunt and uncle came by. They’re from Minnesota. They came
to stay for a few days. It reminded me how important family is. With their support, my
sister’s and my mother and father, I have been getting better. Family is so important.
This is kind of corny, but I’d like to share something with you. When I was in intensive
care I had them play reggae over and over and over again. It’s got the same beat as the
human heart. But I remember one lyric that stood out all the time. It was from a song
that Bob Marley did. It goes, “In life there’s lots of grief, but your love is my relief.”
Sometimes all you need is a hug or someone to hold your hand. That’s it. See you next
week. B. Nice
Monday, October 17, 2011
Chapter 24 – October 17, 2011
Here’s a profound thought of the week: It’s borrowed from a friend. I was skyping with
him the other day and he said this: Life is like a crystal glass you drop upon the floor.
You can glue it together but it will never be the same. I thought that was a good analogy
to how things are with me right now. I reminded him, if you put it back together it will
never be the same again, but it will still work. You see, nothing is the same. Everything
changes. I’ve yet to figure out why this happened to me, but what I realize is, I’ll see it
as a good life lesson. Anyway, that’s my profound thought of the week.
I have to keep reminding myself of the words my neurologist always quoted. He said,
have patience. Man, I’m chomping at the bit right now. It’s tough to be patient. I just
want to get better. I’m stuck here at my parent’s house and just to get out in a car makes
my day. It does help to have friends stop by. And it does help to have people bring
you food. It’s amazing how little things can brighten your day. The other day a woman
friend of mine donated some money towards getting a machine for me to get better.
That’s cool. My mom ordered the machine today. She even got about 20% off. It all
fell into place. The machine is called A New Step. It’s kind of like a recumbent bike. It
helps a lot with walking. I strongly advise you have someone at least 2 people to help
you. That’s what I’ll do.
There will come a time when you have to balance your life and therapy. For example,
my father had an opening of a show. He’s an artist. It was a good show. I went, but it
really made me super tired. Just something small like that will wipe you out. But it’s
good. You see, life becomes therapy. I think I’ll end on that. Life is therapy.
I’ll talk to you guys next week. B. Nice
him the other day and he said this: Life is like a crystal glass you drop upon the floor.
You can glue it together but it will never be the same. I thought that was a good analogy
to how things are with me right now. I reminded him, if you put it back together it will
never be the same again, but it will still work. You see, nothing is the same. Everything
changes. I’ve yet to figure out why this happened to me, but what I realize is, I’ll see it
as a good life lesson. Anyway, that’s my profound thought of the week.
I have to keep reminding myself of the words my neurologist always quoted. He said,
have patience. Man, I’m chomping at the bit right now. It’s tough to be patient. I just
want to get better. I’m stuck here at my parent’s house and just to get out in a car makes
my day. It does help to have friends stop by. And it does help to have people bring
you food. It’s amazing how little things can brighten your day. The other day a woman
friend of mine donated some money towards getting a machine for me to get better.
That’s cool. My mom ordered the machine today. She even got about 20% off. It all
fell into place. The machine is called A New Step. It’s kind of like a recumbent bike. It
helps a lot with walking. I strongly advise you have someone at least 2 people to help
you. That’s what I’ll do.
There will come a time when you have to balance your life and therapy. For example,
my father had an opening of a show. He’s an artist. It was a good show. I went, but it
really made me super tired. Just something small like that will wipe you out. But it’s
good. You see, life becomes therapy. I think I’ll end on that. Life is therapy.
I’ll talk to you guys next week. B. Nice
Thursday, October 6, 2011
Chapter 23 – October 6, 2011
Man, I’ll tell you. Depression is a real drag. I can’t help it, but, I often get depressed.
It’s something that’s always lurking in the background it seems. Who wouldn’t be
depressed if they were like this. I just have to make a physical progress report. On the
positive note, my eyes seem to be moving together. Before, my right eye went up and
down and my left eye went side to side. They were cross-eyed as well. Not fun. A lot
for the brain to deal with. Now my eyes move up and down together. But I still see
cross-eyed. I am still very dizzy. I have a hard time feeding myself, or using the
toothbrush. But, overall, I feel a sense of clarity. I feel like I’m going to get better. My
therapist wants me to do a lot of weight bearing exercises. For example: He’ll put 2 and
a half pound weights on your wrists. It helps me because it stops the shaking. You see,
I’m not aware of where my hand is or feet. I have to look at my hand to see where it is. I
used to call my hand the meerkat, because I’d wake up at night and my hand would be up
in the air. I thought it was down by my side. It would scare the hell out of me. Imagine
getting in a fight with your own arm. Never a dull moment. Anyway, I kind of went off
on a tangent there. I was talking about depression, and yes, I get sad. But, you know,
you gotta think of positive things. For example: I’m stuck living at home with my
parents, home meaing, my childhood home. My parent’s house. But the positive of that
is that I get to hang out with them and get to know them. There’s lots of positive things.
I’ve been taking pictures of how I see the world right now. I’m having a one man show.
Anyway, I just try to think of the positive things. On a positive note, I got a new
wheelchair. It allows me to have more freedom and independence. I use my own legs to
get around. It’s good exercise and I don’t feel confined anymore. Before, I relied on
family and friends to move me from point a to point b. Now I can do it on my own.
Soon, the hands will get better and I could propel myself with my hands. Right now, it
dosen’t work. My fingers get caught in the spokes. Not a good look. I still rely on my
Mom to do all my email and my friend Julie to do all my blogs. But, my hands will get
better one day.
OK, I’ve been thinking about this for a while, whether or not to air all my dirty laundry,
but it might help someone somewhere, so I’ll do it. You see, when you have an injury
like this on your brainstem, it affects many parts of the body. For a long time before, I
would have problems with my relationships. It was difficult sometimes to be intimate
with my girlfriends at the time. I never addressed it because it happened off and on, but
it got worse as I got older. Looking back, I should have addressed the issue right away.
But I didn’t. So, my advice would be don’t be shy about any problems you have with
intimacy. Talk to your doctor about it.
OK, let’s talk about something else. Like, bunnies or kittens or sunny days. I’ll go back
to how I started. I’ll talk about the depression topic again. I used to go for a run or go
surfing. It was always some form of physical exercise to get me out of a funk. But I
can’t do that now. That is, until I discovered a thing called a new step. It’s a machine
that allows you to exercise safely. I’m going to get one of these. They are a bit pricey,
but it’s worth the investment. I wish I could go for a loooong run, but that won’t be until
later.
Well, it’s been over 2 years since my first event. I’ve been training and fighting for 2
years, every day I do some form of therapy. I’m getting a little tired of this. I have to
remind myself to stay positive. It’s been a long journey, but there’s gotta be some thing
good that comes out of this. I really believe that out of really bad things something good
comes out of it. I have to believe that. Anyway, that’s the end of my pity party. It’s easy
to become bitter. You have to stay positive. I saw my surfing buddy the other day, and
we were talking about our old surf spot. They sent me some photos of a beautiful day we
had in the fall one year. Overhead waves, clean off shore wind. Warm breezes and cold
water. The perfect day. Good memories. Anyway, I’ll talk to you guys next week. Bye
for now. B. Nice.
It’s something that’s always lurking in the background it seems. Who wouldn’t be
depressed if they were like this. I just have to make a physical progress report. On the
positive note, my eyes seem to be moving together. Before, my right eye went up and
down and my left eye went side to side. They were cross-eyed as well. Not fun. A lot
for the brain to deal with. Now my eyes move up and down together. But I still see
cross-eyed. I am still very dizzy. I have a hard time feeding myself, or using the
toothbrush. But, overall, I feel a sense of clarity. I feel like I’m going to get better. My
therapist wants me to do a lot of weight bearing exercises. For example: He’ll put 2 and
a half pound weights on your wrists. It helps me because it stops the shaking. You see,
I’m not aware of where my hand is or feet. I have to look at my hand to see where it is. I
used to call my hand the meerkat, because I’d wake up at night and my hand would be up
in the air. I thought it was down by my side. It would scare the hell out of me. Imagine
getting in a fight with your own arm. Never a dull moment. Anyway, I kind of went off
on a tangent there. I was talking about depression, and yes, I get sad. But, you know,
you gotta think of positive things. For example: I’m stuck living at home with my
parents, home meaing, my childhood home. My parent’s house. But the positive of that
is that I get to hang out with them and get to know them. There’s lots of positive things.
I’ve been taking pictures of how I see the world right now. I’m having a one man show.
Anyway, I just try to think of the positive things. On a positive note, I got a new
wheelchair. It allows me to have more freedom and independence. I use my own legs to
get around. It’s good exercise and I don’t feel confined anymore. Before, I relied on
family and friends to move me from point a to point b. Now I can do it on my own.
Soon, the hands will get better and I could propel myself with my hands. Right now, it
dosen’t work. My fingers get caught in the spokes. Not a good look. I still rely on my
Mom to do all my email and my friend Julie to do all my blogs. But, my hands will get
better one day.
OK, I’ve been thinking about this for a while, whether or not to air all my dirty laundry,
but it might help someone somewhere, so I’ll do it. You see, when you have an injury
like this on your brainstem, it affects many parts of the body. For a long time before, I
would have problems with my relationships. It was difficult sometimes to be intimate
with my girlfriends at the time. I never addressed it because it happened off and on, but
it got worse as I got older. Looking back, I should have addressed the issue right away.
But I didn’t. So, my advice would be don’t be shy about any problems you have with
intimacy. Talk to your doctor about it.
OK, let’s talk about something else. Like, bunnies or kittens or sunny days. I’ll go back
to how I started. I’ll talk about the depression topic again. I used to go for a run or go
surfing. It was always some form of physical exercise to get me out of a funk. But I
can’t do that now. That is, until I discovered a thing called a new step. It’s a machine
that allows you to exercise safely. I’m going to get one of these. They are a bit pricey,
but it’s worth the investment. I wish I could go for a loooong run, but that won’t be until
later.
Well, it’s been over 2 years since my first event. I’ve been training and fighting for 2
years, every day I do some form of therapy. I’m getting a little tired of this. I have to
remind myself to stay positive. It’s been a long journey, but there’s gotta be some thing
good that comes out of this. I really believe that out of really bad things something good
comes out of it. I have to believe that. Anyway, that’s the end of my pity party. It’s easy
to become bitter. You have to stay positive. I saw my surfing buddy the other day, and
we were talking about our old surf spot. They sent me some photos of a beautiful day we
had in the fall one year. Overhead waves, clean off shore wind. Warm breezes and cold
water. The perfect day. Good memories. Anyway, I’ll talk to you guys next week. Bye
for now. B. Nice.
Tuesday, September 27, 2011
Chapter 22 – September 27, 2011
Thank God for my mom. If it wasn’t for her, I don’t know what I’d do. I guess I’d be
in some institution somewhere. It’s good to have someone look after you. I get it, I
understand, because I have a child and I would do the same. If you have a TBI you are
assigned a social worker. That will help you, but it’s still good to have either a family
member or a friend do most of the work. The social worker has many caseloads. You
are one of many. It’s easy to get lost in the crowd, and there’s so much to know. It
changes all the time. What a mess. Anyway, my Mom has become an expert of what to
do. There is help out there. You just have to know where it is and go after it. It’s a full
time job.
On the positive note, I saw my surgeon for my yearly check up. I had to do an MRI with
contrast before the meeting. The MRI was tough because I seem to get claustrophobia.
But I just thought about surfing. You’ll find you just need to think about something or
somewhere that makes you happy and you will break the routine. The phobia. I guess
it’s like meditation. I had a good check up. Nothing new. No need for further surgery.
There is one small, very small malformation in the middle of my brainstem, but if they
operate, it’s the end of me. So I’ll just live with it. You know, you could get hit by a
taxi, or a garbage truck, you never know what’s around the corner. You see we live with
stuff in our body you don’t want to know about. One way to stay up all night is to get a
body scan done. That’ll put the fear of God into you! Anyway, I guess what I’m saying
is, live your life. When something goes wrong, fix it.
On another note, I saw my shrink earlier today and she said it’s so important to get sleep.
I often wake up in the early hours of the morning thinking too much. Not good. I’ll go
to bed later and get up a little later. Then she advised taking a two hour nap in the middle
of the day. You see, when you have TBI, it’s good to rest. Most healing is done when
you’re asleep. More sleep = more healing. Sounds good to me. I’m always tired. So I
think I’ll follow her advice.
Oh yeah, I keep saying TBI. It’s kind of a shortened version of saying Traumatic Brain
Injury. Just a form of slang.
Anyway, it was good to talk to my shrink. When you go through something like this,
it’s so important to have someone to talk to. I told her about my show of photography. I
think I’ll have fun putting it all together. Like an artist friend I met said, do something
you have a passion for. This was a guy named Chuck Close. I love his work. He often
works with photography. But if you do what you have a passion for, it will help you
heal. I’ve been taking pictures of how I see the world and it’s a nice distraction. Do
what makes you happy. I think it’s important to be happy. Especially with the way
things are going now. I hear it’s pretty tough out there. My friends that come by talk
about how hard work is, how difficult it is to get work, etc. I guess I picked a good few
years to sit on the sidelines. It’s kind of liberating not to think about where the next job
will be coming from. I haven’t thought about work for two years. I’m happy just to see
my toes move. You really appreciate the small things in life when you’re like this.
Next week I got a prescription to start pool therapy. It really helps. My first time around,
it really helped me. I’m looking forward to it. It takes the fear out of falling and since
I’m kind of a water person anyway, it feels great.
Anyway, enough of my chit chat. I think I’ve been talking too long. I’ll talk to you guys
next week. Have a good week. Try to be happy. B. Nice.
in some institution somewhere. It’s good to have someone look after you. I get it, I
understand, because I have a child and I would do the same. If you have a TBI you are
assigned a social worker. That will help you, but it’s still good to have either a family
member or a friend do most of the work. The social worker has many caseloads. You
are one of many. It’s easy to get lost in the crowd, and there’s so much to know. It
changes all the time. What a mess. Anyway, my Mom has become an expert of what to
do. There is help out there. You just have to know where it is and go after it. It’s a full
time job.
On the positive note, I saw my surgeon for my yearly check up. I had to do an MRI with
contrast before the meeting. The MRI was tough because I seem to get claustrophobia.
But I just thought about surfing. You’ll find you just need to think about something or
somewhere that makes you happy and you will break the routine. The phobia. I guess
it’s like meditation. I had a good check up. Nothing new. No need for further surgery.
There is one small, very small malformation in the middle of my brainstem, but if they
operate, it’s the end of me. So I’ll just live with it. You know, you could get hit by a
taxi, or a garbage truck, you never know what’s around the corner. You see we live with
stuff in our body you don’t want to know about. One way to stay up all night is to get a
body scan done. That’ll put the fear of God into you! Anyway, I guess what I’m saying
is, live your life. When something goes wrong, fix it.
On another note, I saw my shrink earlier today and she said it’s so important to get sleep.
I often wake up in the early hours of the morning thinking too much. Not good. I’ll go
to bed later and get up a little later. Then she advised taking a two hour nap in the middle
of the day. You see, when you have TBI, it’s good to rest. Most healing is done when
you’re asleep. More sleep = more healing. Sounds good to me. I’m always tired. So I
think I’ll follow her advice.
Oh yeah, I keep saying TBI. It’s kind of a shortened version of saying Traumatic Brain
Injury. Just a form of slang.
Anyway, it was good to talk to my shrink. When you go through something like this,
it’s so important to have someone to talk to. I told her about my show of photography. I
think I’ll have fun putting it all together. Like an artist friend I met said, do something
you have a passion for. This was a guy named Chuck Close. I love his work. He often
works with photography. But if you do what you have a passion for, it will help you
heal. I’ve been taking pictures of how I see the world and it’s a nice distraction. Do
what makes you happy. I think it’s important to be happy. Especially with the way
things are going now. I hear it’s pretty tough out there. My friends that come by talk
about how hard work is, how difficult it is to get work, etc. I guess I picked a good few
years to sit on the sidelines. It’s kind of liberating not to think about where the next job
will be coming from. I haven’t thought about work for two years. I’m happy just to see
my toes move. You really appreciate the small things in life when you’re like this.
Next week I got a prescription to start pool therapy. It really helps. My first time around,
it really helped me. I’m looking forward to it. It takes the fear out of falling and since
I’m kind of a water person anyway, it feels great.
Anyway, enough of my chit chat. I think I’ve been talking too long. I’ll talk to you guys
next week. Have a good week. Try to be happy. B. Nice.
Wednesday, September 21, 2011
Chapter 21 – September 13, 2011
I woke up this morning and had a moment of clarity. I looked down at my hands and feet
and thought, “Man, am I messed up.” And then it went away. A moment of clarity will
build and build. The body is waking up, but with that comes a price. You realize how
messed up you are. I try to turn it around and think positive. I’ve got to be thankful for
the clarity. Sure I’m messed up, but I am getting better. It’s so slow, you can’t imagine.
My shrink came by today. She is very helpful. I’m having anxiety about my up
and coming MRI. They put you on a gurney and bring you into a tube. It’s very
claustrophobic. Lasts about 40 minutes. I don’t know why because in the past I’ve been
all right with MRI, but now I feel very claustrophobic. I hope I can do it without a panic
attack. I’ll try and think of something like surfing.
My eyes seem to be getting better. Both eyes are jumping up and down together. Before,
one eye went up and down and the other eye went side to side. Now they are working
together. No more eye patch. I still wear the prism glasses in the morning and afternoon.
Therapy has been good. I’ve been walking a little smoother. I walk with a therapist on
the right and the left, with my arms over their shoulders. It’s a good thing I had a lot of
training in this area. I used to do the drunken sailor walk home all the time. I used to
like to be at the bar. Anyway, that was then. The therapists are working on getting me
stronger. They are working on more weight bearing exercises. Every one is different.
You’ll find out. I did notice a lot of soldiers at my therapy session. There must be a lot
of people coming back from the wars with injuries. Man, talk about stress.
My father has been doing a lot of work lately. He’s been commissioned to do landscapes
from above. It’s all about the Hudson Highlands. Good stuff. Seeing the work makes
me want to go out and shoot. I wish I could go along with him and do photos. Patience.
I meet on Friday with a gallery to talk about doing a retrospective of my work. I have to
find a curator and start thinking about the show. Should take about a year to put together
properly. It’ll be a nice distraction.
At this stage, it’s pretty tough. It becomes a mental game. Like I said, I can do it
physically, but I’ve never been tested like this mentally. Needless to say, I don’t get
much sleep. I end up staring at the ceiling a lot. My profound statement of the day is:
never think too much.
P.S. The other day was September 11th. Ten years ago was the tragedy of September
11th, 2001. I was surfing back then. There was a Bermuda Low pushing up a nice swell
towards Montauk. It was a perfect day for surfing. Offshore winds. Doesn’t get better.
Anyway, there were some guys who were playing hooky from work because the waves
were so good. Their lives were spared because of surfing. They would have been in the
twin towers during the collapse. They were in a state of shock as all their friends were
gone. But they were saved because of the waves. It was a strange day. We were all in
the parking lot listening to our radios in our cars. There was one guy out there. A perfect
day and only one person surfing. Some F-18 fighter jets came down from the northeast.
They came screaming by with their afterburners on, hauling butt towards New York.
With that we left for home. What a sad day. I got home and retired my board, never to
ride that board again.
This week, 10 years on, there was another Bermuda Low. I’m sure there were great
waves. I hope all my friends enjoyed it. Those days are over for me, I think. But you
never know. I might be back. See you next week.
B. Nice
and thought, “Man, am I messed up.” And then it went away. A moment of clarity will
build and build. The body is waking up, but with that comes a price. You realize how
messed up you are. I try to turn it around and think positive. I’ve got to be thankful for
the clarity. Sure I’m messed up, but I am getting better. It’s so slow, you can’t imagine.
My shrink came by today. She is very helpful. I’m having anxiety about my up
and coming MRI. They put you on a gurney and bring you into a tube. It’s very
claustrophobic. Lasts about 40 minutes. I don’t know why because in the past I’ve been
all right with MRI, but now I feel very claustrophobic. I hope I can do it without a panic
attack. I’ll try and think of something like surfing.
My eyes seem to be getting better. Both eyes are jumping up and down together. Before,
one eye went up and down and the other eye went side to side. Now they are working
together. No more eye patch. I still wear the prism glasses in the morning and afternoon.
Therapy has been good. I’ve been walking a little smoother. I walk with a therapist on
the right and the left, with my arms over their shoulders. It’s a good thing I had a lot of
training in this area. I used to do the drunken sailor walk home all the time. I used to
like to be at the bar. Anyway, that was then. The therapists are working on getting me
stronger. They are working on more weight bearing exercises. Every one is different.
You’ll find out. I did notice a lot of soldiers at my therapy session. There must be a lot
of people coming back from the wars with injuries. Man, talk about stress.
My father has been doing a lot of work lately. He’s been commissioned to do landscapes
from above. It’s all about the Hudson Highlands. Good stuff. Seeing the work makes
me want to go out and shoot. I wish I could go along with him and do photos. Patience.
I meet on Friday with a gallery to talk about doing a retrospective of my work. I have to
find a curator and start thinking about the show. Should take about a year to put together
properly. It’ll be a nice distraction.
At this stage, it’s pretty tough. It becomes a mental game. Like I said, I can do it
physically, but I’ve never been tested like this mentally. Needless to say, I don’t get
much sleep. I end up staring at the ceiling a lot. My profound statement of the day is:
never think too much.
P.S. The other day was September 11th. Ten years ago was the tragedy of September
11th, 2001. I was surfing back then. There was a Bermuda Low pushing up a nice swell
towards Montauk. It was a perfect day for surfing. Offshore winds. Doesn’t get better.
Anyway, there were some guys who were playing hooky from work because the waves
were so good. Their lives were spared because of surfing. They would have been in the
twin towers during the collapse. They were in a state of shock as all their friends were
gone. But they were saved because of the waves. It was a strange day. We were all in
the parking lot listening to our radios in our cars. There was one guy out there. A perfect
day and only one person surfing. Some F-18 fighter jets came down from the northeast.
They came screaming by with their afterburners on, hauling butt towards New York.
With that we left for home. What a sad day. I got home and retired my board, never to
ride that board again.
This week, 10 years on, there was another Bermuda Low. I’m sure there were great
waves. I hope all my friends enjoyed it. Those days are over for me, I think. But you
never know. I might be back. See you next week.
B. Nice
Tuesday, September 20, 2011
Chapter 22 – September 20, 2011
I hope my friend Julie who’s typing this can understand me. I had a rough night last
night. Threw up all night. Didn’t get much sleep. Therefore, my speech is bad.
I was thinking, the word for today would be – stress.
Whenever you’re in a condition like this, TBI, stress is a bad thing. I believe my
relationship problems, my personal life, has made everything very stressful. My stomach
over produces mucus, and I tend to throw it up. It’s been keeping me up every night.
Good thing I take naps. My suggestion is just try to avoid stress.
On a more positive note, a gallery came by the other day and I’m going to have a show of
my work. A specific period before my injury, and how I see the world now. It’s a cool
idea. It’s a nice distraction.
My friend Susie came by with some spaghetti and meat balls, my favorite. It’s good to
have good friends. It makes the time go by so much better. And lifts one’s spirits. Good
to have friends.
I do feel like I’m getting better. There’s a sense of clarity coming through. But I still
feel very tight in the face and the arms, hands and legs. A very strange sensation. But I
feel like I’m gonna get better. It’s hard to explain. It’s more of a sensation. More of a
knowing that I’m going to get better.
Today we had a nice fire in the fireplace. The beginning of fall. It’s a great feeling. I
feel like an old man, in my wheelchair with my blanket over the lap sitting next to a fire
with my dog. I can tell what it feels like when we get old, and it sucks. Wish I could
stay young forever.
Anyway, just to summarize, try to keep stress out of your life. Remember the word
disease is dis-ease. Your body is not happy. Try to stay happy. See you next week.
night. Threw up all night. Didn’t get much sleep. Therefore, my speech is bad.
I was thinking, the word for today would be – stress.
Whenever you’re in a condition like this, TBI, stress is a bad thing. I believe my
relationship problems, my personal life, has made everything very stressful. My stomach
over produces mucus, and I tend to throw it up. It’s been keeping me up every night.
Good thing I take naps. My suggestion is just try to avoid stress.
On a more positive note, a gallery came by the other day and I’m going to have a show of
my work. A specific period before my injury, and how I see the world now. It’s a cool
idea. It’s a nice distraction.
My friend Susie came by with some spaghetti and meat balls, my favorite. It’s good to
have good friends. It makes the time go by so much better. And lifts one’s spirits. Good
to have friends.
I do feel like I’m getting better. There’s a sense of clarity coming through. But I still
feel very tight in the face and the arms, hands and legs. A very strange sensation. But I
feel like I’m gonna get better. It’s hard to explain. It’s more of a sensation. More of a
knowing that I’m going to get better.
Today we had a nice fire in the fireplace. The beginning of fall. It’s a great feeling. I
feel like an old man, in my wheelchair with my blanket over the lap sitting next to a fire
with my dog. I can tell what it feels like when we get old, and it sucks. Wish I could
stay young forever.
Anyway, just to summarize, try to keep stress out of your life. Remember the word
disease is dis-ease. Your body is not happy. Try to stay happy. See you next week.
Tuesday, September 6, 2011
Chapter 20 - September 6, 2011
I heard something funny the other day. It came from a friend of mine, and it applies to
anyone with my condition: He said, Some days you’re the bug. Other days you’re the
windshield. We are going to have ups and downs and they’re pretty major. You see,
anything you would normally experience, like a cold or the flu, or a bad day, is multiplied
ten fold.
I had another bad day. There’s always a good day around the corner. Not much to report
really. I’ve been producing a lot of saliva in my mouth. It pools at night in the back
of my throat and makes me choke. I wake up often coughing a lot. It affects my sleep
pattern for sure. It’s probably why I was so tired the other day. Another thing to deal
with. Such a pain in the ass. I did get a bit of encouragement from my therapist today.
She had been away on a 2 week vacation. She noticed my eyes were getting better. And
it’s true, they are. It’s just very slow, but it’s encouraging to get feedback from someone
else.
I got some news the other day. It reminded me how fragile life is. You see, a guy we
used to windsurf with died windsurfing. He apparently hit some debris in the water after
the hurricane came through. You never know what’s around the corner, so enjoy every
moment possible. Anyway, that’s negative, but I feel bad for him and his family.
On a positive note: my nephew had his birthday the other day. It was fun to see him and
see all his friends. They were laughing and swimming and playing soccer. It made me
want to join them. I’d love to get out of this damn wheelchair. But I had a good time
with cake and ice cream. It was a nice little party.
Speaking of parties, I started swimming therapy again. It’s been great. It really does
help with one’s balance. I highly recommend it. I’ll tell you, any therapy is great and
so helpful. I was in the living room and I heard my mom crying the other day. She got
a letter from the state and they said for some patients they would discontinue or limit
therapy. She got upset before she finished the letter, because people like me, traumatic
brain injury, are exempt, and I will still get my therapy as required. But I feel bad for the
people who will be restricted. Therapy is so important. I don’t get it. I mean it makes
more sense to me to make sure someone gets better so they can join the real world again,
like work, pay taxes, etc. Otherwise, they just become a burden to society. Therapy is so
important. It really does help. I’ve been at it for about 2 years now, and it has made me
get better. Don’t even get me started. It’s important to have therapy. I’ll just leave it at
that.
anyone with my condition: He said, Some days you’re the bug. Other days you’re the
windshield. We are going to have ups and downs and they’re pretty major. You see,
anything you would normally experience, like a cold or the flu, or a bad day, is multiplied
ten fold.
I had another bad day. There’s always a good day around the corner. Not much to report
really. I’ve been producing a lot of saliva in my mouth. It pools at night in the back
of my throat and makes me choke. I wake up often coughing a lot. It affects my sleep
pattern for sure. It’s probably why I was so tired the other day. Another thing to deal
with. Such a pain in the ass. I did get a bit of encouragement from my therapist today.
She had been away on a 2 week vacation. She noticed my eyes were getting better. And
it’s true, they are. It’s just very slow, but it’s encouraging to get feedback from someone
else.
I got some news the other day. It reminded me how fragile life is. You see, a guy we
used to windsurf with died windsurfing. He apparently hit some debris in the water after
the hurricane came through. You never know what’s around the corner, so enjoy every
moment possible. Anyway, that’s negative, but I feel bad for him and his family.
On a positive note: my nephew had his birthday the other day. It was fun to see him and
see all his friends. They were laughing and swimming and playing soccer. It made me
want to join them. I’d love to get out of this damn wheelchair. But I had a good time
with cake and ice cream. It was a nice little party.
Speaking of parties, I started swimming therapy again. It’s been great. It really does
help with one’s balance. I highly recommend it. I’ll tell you, any therapy is great and
so helpful. I was in the living room and I heard my mom crying the other day. She got
a letter from the state and they said for some patients they would discontinue or limit
therapy. She got upset before she finished the letter, because people like me, traumatic
brain injury, are exempt, and I will still get my therapy as required. But I feel bad for the
people who will be restricted. Therapy is so important. I don’t get it. I mean it makes
more sense to me to make sure someone gets better so they can join the real world again,
like work, pay taxes, etc. Otherwise, they just become a burden to society. Therapy is so
important. It really does help. I’ve been at it for about 2 years now, and it has made me
get better. Don’t even get me started. It’s important to have therapy. I’ll just leave it at
that.
Tuesday, August 30, 2011
Chapter 19 - August 30, 2011
Oh man am I ever sore. You see, I fell out of the car. It wasn’t moving. I just slipped.
My mother and my aid caught me, but it was a struggle to get me in the chair. I hit
my head, my knees, my arms. I feel like I got in a fight with Derek Jeter and his bat.
Anyway, we went to get me a better phone. I realize that I’m not ready yet for the
outside world. At the AT&T cell phone store I had to wait a while. I started to panic.
Not a good feeling. But I feel better now. I’m home with my family and friends. Just
another thing to deal with.
The profound statement I got at this is, Don’t Panic. It was weird. I did have a major
panic attack last Thursday, about 4 days ago. I was leaning over the table, getting a
massage. You would think that would be relaxing, but I guess it must have cut off my air
supply somehow. I felt like I was suffocating. One thing lead to another. Next thing you
know, I was panicking. Feeling very claustrophobic. The good thing was, the woman
giving me a massage, was also by tai chi teacher. She knew what to do and what to say
to talk me out of it. I just imagined myself in the open desert. That was very helpful.
Remember, don’t panic. Try to think of your favorite place or favorite thing to do. Put
yourself there. It helps.
I was thinking about it. It could also be an anxiety as I signed my divorce papers the
same afternoon. That could have been the trigger as well. Who knows. Like I said
before, just another thing. Oh, yeah. He he. Just signed my final divorce papers,
Hurricane Irene came in with a vengence. Kind of ironic. I felt like I was on the set of
the Wizard of Oz. It was a profound moment. We weathered the hurricane well. Not
much damage at all. It was cool for taking photographs, and this, I did. Remember,
when you’re in a condition like this, you have to do something you love, and I love
photography. In photography, I’ve always worn many hats. I love landscape. I love
people. I love fashion. I love beauty. I just love taking pictures. Sometimes you know
what you’re going to get. Sometimes, it’s a surprise. You get what you don’t know.
Never a dull moment. I guess that’s why I love photography.
I mentioned earlier, Irene. Well, this week, it was all over the news. I guess Montauk
got hit pretty hard. It wasn’t as bad as it could have been. But it was bad. I was kind
of hoping my 2 houses would be wiped off the path. Heh, heh. But that’s negative
thinking, and we don’t want to go there. I know I built a strong house. And the other
one was a bunker. It was strong. So I’m sure they did all right. Anyway, my ex has one
house, the old one, and she sold the new one, my dream house when I was in hospital the
first year. Either way, they’re all gone as far as I’m concerned.
Quite the storm though. It was cool to watch on TV. My friend just asked me if I would
be surfing. My answer would be yes, but after the hurricane passes. Before it would only
be good for wind surfing. I don’t own a hurricane sail. But, if I were well, and things
were as they were, I would have been out there the day after the storm and on and on and
on, as long as the waves lasted. Waves are beautiful after a hurricane. I miss surfing
hurricane swells, but those days are over for me I feel. But you never know.
I wish I could get better faster. This whole thing is a looonng process. Right now I have
a problem with the thickener. It’s a substance you add to your drink to make it nectar
thick, but it was making me constipated and it made me gain weight. My mom and my
friend came up with the idea of using a juicer. I now have peach nectar and mango nectar
to thicken my drinks. I thicken my coffee with banana. It’s healthy, it works and it tastes
good. Remember, I’m no doctor. I’m just describing my experience. Maybe it will help
you. I don’t know. Just thoughts I’m putting out there.
My friend was asking more about the car and the fall. And I remembered, I forgot
to mention something. When I was at the AT&T store, what triggered my panic
was the attitude of the staff. Now I know what it feels like to be in a wheelchair,
handicapped, disabled, whatever you want to call it, and be dismissed. I felt what it is to
be discriminated. I guess some people just don’t know how to deal with someone in my
situation. I don’t blame them. It’s just an interesting observation. I never experienced
it before. Not a fun thing. Remember, my brain injury was on the brainstem, so my
cognitive thoughts, everything, all my emotions, my feelings, my memory, it’s all good.
It’s just that I’m trapped in my own body. My physical side is compromised. Very
frustrating.
O.k. I’ll put away my soap box, step down.
I guess there’s not much more to report on. I still feel the same. I feel like shit. My
eyesight seems to be getting a little better. But I’m still super dizzy. As my aid
says, “I’m getting little victories here and there.” I’m getting better, but it’s real slow.
It’s good to think about the positive things that come out of this. I have to remember it’s
great to get to know my parents again. It’s great to get to see my old friends. It’s great to
be in my old home. I just wish I would get better a little faster.
One of the hardest things is to come down for breakfast and see only photos and art that
my daughter did. I miss my daughter. Sometimes it seems it’s not fair. I really don’t
believe I did anything wrong. I never did anything bad. Just the way it goes. I guess
we’re destined sometimes for some reason. Who knows? You deal with what you got.
Its hard to live life without happiness, but my friends came by the other day and wrote a
song about my condition. It was a good song, and they’re good singer/songwriters. They
gave me a mini-concert with the old and new material. It was a moment of happiness.
Sometimes you just need a moment to break up the sadness. It really does help. So I
guess, my profound thought of the day is: Try to include some form of happiness in your
life each day. It’s up to us. See you next week.
My mother and my aid caught me, but it was a struggle to get me in the chair. I hit
my head, my knees, my arms. I feel like I got in a fight with Derek Jeter and his bat.
Anyway, we went to get me a better phone. I realize that I’m not ready yet for the
outside world. At the AT&T cell phone store I had to wait a while. I started to panic.
Not a good feeling. But I feel better now. I’m home with my family and friends. Just
another thing to deal with.
The profound statement I got at this is, Don’t Panic. It was weird. I did have a major
panic attack last Thursday, about 4 days ago. I was leaning over the table, getting a
massage. You would think that would be relaxing, but I guess it must have cut off my air
supply somehow. I felt like I was suffocating. One thing lead to another. Next thing you
know, I was panicking. Feeling very claustrophobic. The good thing was, the woman
giving me a massage, was also by tai chi teacher. She knew what to do and what to say
to talk me out of it. I just imagined myself in the open desert. That was very helpful.
Remember, don’t panic. Try to think of your favorite place or favorite thing to do. Put
yourself there. It helps.
I was thinking about it. It could also be an anxiety as I signed my divorce papers the
same afternoon. That could have been the trigger as well. Who knows. Like I said
before, just another thing. Oh, yeah. He he. Just signed my final divorce papers,
Hurricane Irene came in with a vengence. Kind of ironic. I felt like I was on the set of
the Wizard of Oz. It was a profound moment. We weathered the hurricane well. Not
much damage at all. It was cool for taking photographs, and this, I did. Remember,
when you’re in a condition like this, you have to do something you love, and I love
photography. In photography, I’ve always worn many hats. I love landscape. I love
people. I love fashion. I love beauty. I just love taking pictures. Sometimes you know
what you’re going to get. Sometimes, it’s a surprise. You get what you don’t know.
Never a dull moment. I guess that’s why I love photography.
I mentioned earlier, Irene. Well, this week, it was all over the news. I guess Montauk
got hit pretty hard. It wasn’t as bad as it could have been. But it was bad. I was kind
of hoping my 2 houses would be wiped off the path. Heh, heh. But that’s negative
thinking, and we don’t want to go there. I know I built a strong house. And the other
one was a bunker. It was strong. So I’m sure they did all right. Anyway, my ex has one
house, the old one, and she sold the new one, my dream house when I was in hospital the
first year. Either way, they’re all gone as far as I’m concerned.
Quite the storm though. It was cool to watch on TV. My friend just asked me if I would
be surfing. My answer would be yes, but after the hurricane passes. Before it would only
be good for wind surfing. I don’t own a hurricane sail. But, if I were well, and things
were as they were, I would have been out there the day after the storm and on and on and
on, as long as the waves lasted. Waves are beautiful after a hurricane. I miss surfing
hurricane swells, but those days are over for me I feel. But you never know.
I wish I could get better faster. This whole thing is a looonng process. Right now I have
a problem with the thickener. It’s a substance you add to your drink to make it nectar
thick, but it was making me constipated and it made me gain weight. My mom and my
friend came up with the idea of using a juicer. I now have peach nectar and mango nectar
to thicken my drinks. I thicken my coffee with banana. It’s healthy, it works and it tastes
good. Remember, I’m no doctor. I’m just describing my experience. Maybe it will help
you. I don’t know. Just thoughts I’m putting out there.
My friend was asking more about the car and the fall. And I remembered, I forgot
to mention something. When I was at the AT&T store, what triggered my panic
was the attitude of the staff. Now I know what it feels like to be in a wheelchair,
handicapped, disabled, whatever you want to call it, and be dismissed. I felt what it is to
be discriminated. I guess some people just don’t know how to deal with someone in my
situation. I don’t blame them. It’s just an interesting observation. I never experienced
it before. Not a fun thing. Remember, my brain injury was on the brainstem, so my
cognitive thoughts, everything, all my emotions, my feelings, my memory, it’s all good.
It’s just that I’m trapped in my own body. My physical side is compromised. Very
frustrating.
O.k. I’ll put away my soap box, step down.
I guess there’s not much more to report on. I still feel the same. I feel like shit. My
eyesight seems to be getting a little better. But I’m still super dizzy. As my aid
says, “I’m getting little victories here and there.” I’m getting better, but it’s real slow.
It’s good to think about the positive things that come out of this. I have to remember it’s
great to get to know my parents again. It’s great to get to see my old friends. It’s great to
be in my old home. I just wish I would get better a little faster.
One of the hardest things is to come down for breakfast and see only photos and art that
my daughter did. I miss my daughter. Sometimes it seems it’s not fair. I really don’t
believe I did anything wrong. I never did anything bad. Just the way it goes. I guess
we’re destined sometimes for some reason. Who knows? You deal with what you got.
Its hard to live life without happiness, but my friends came by the other day and wrote a
song about my condition. It was a good song, and they’re good singer/songwriters. They
gave me a mini-concert with the old and new material. It was a moment of happiness.
Sometimes you just need a moment to break up the sadness. It really does help. So I
guess, my profound thought of the day is: Try to include some form of happiness in your
life each day. It’s up to us. See you next week.
Tuesday, August 23, 2011
Chapter 18 - August 23, 2011
I have a lot to say this week. I don’t know where to begin. Last week was my 2 year
anniversary. It was about 2 years ago that I had my major bleed. I was recovering from
my bleed a year into it, I had another operation, so I’ve had 2 brain surgeries over two
years. What a drag. Whenever you reach an anniversary or milestone, it brings up
memories. Things I choose not to remember. It’s been tough. But I still keep looking
forward. Through all the crap like my divorce, not seeing my daughter. Slowly healing.
Etc. My friend who’s writing this for me had a vacation. I need a vacation. I wish I
could go surfing. I just need a break it seems. Oh well. I’ll just keep going.
One positive thing I think of is I bought a lift. Sure Hands Lift. It’s been great. Best
piece of equipment I’ve had yet. It helps me sit, balance, stand, pull ups, all good things
for healing. I stand for twenty minutes in the morning and twenty minutes at night. It’s
great. It helps the blood flow and it seems to be good for my chest. A positive thing. It
feels great to get out of my wheelchair.
Another positive thing is I started recreational pool therapy. I go to the pool and float
on my back. It feels great. As time goes on you start in the deep end walking, and end
up in the shallow end walking. But I’m not there yet. I only use the pool to relax at the
moment.
I don’t know why but when I got in the pool, I had an epiphany: I realized how messed
up I was. I have a long way to go to get better. I guess the fear I have of drowning if
someone dropped m in the water, I could easily drown. Not a comfortable feeling. I am
used to the water. I’m a water person. Worst comes to worst, I could hold my breath for
a long time. The trick is not to panic. Anyway, I believe water therapy really helps you.
I can’t wait to go more often. I have to get permission from my physical therapist.
This week, my mom got me out of the house, broke up my routine by bringing me to my
friend’s house. He has a great place about half an hour away. It was kind of bitter sweet
going there ‘cause it made me realize I have no home. I have nothing. I was happy for
him, because it’s a nice home. I guess one day I’ll have a home. Everyone says it’s just
a material thing, but it makes a difference having a home. I miss my home.
I’m searching for the profound thought of the day. I can’t think of one. Maybe we
should ask the dog. He’s been a good companion. What did Neal Young say, “A man
needs a maid.” Instead, I have a dog. He’s good for me because I seem to benefit from
having him. It works the hands because I pet him a lot and I play fetch with him. You
see, at this point in time, life becomes therapy. That’s my profound thought of the day!
anniversary. It was about 2 years ago that I had my major bleed. I was recovering from
my bleed a year into it, I had another operation, so I’ve had 2 brain surgeries over two
years. What a drag. Whenever you reach an anniversary or milestone, it brings up
memories. Things I choose not to remember. It’s been tough. But I still keep looking
forward. Through all the crap like my divorce, not seeing my daughter. Slowly healing.
Etc. My friend who’s writing this for me had a vacation. I need a vacation. I wish I
could go surfing. I just need a break it seems. Oh well. I’ll just keep going.
One positive thing I think of is I bought a lift. Sure Hands Lift. It’s been great. Best
piece of equipment I’ve had yet. It helps me sit, balance, stand, pull ups, all good things
for healing. I stand for twenty minutes in the morning and twenty minutes at night. It’s
great. It helps the blood flow and it seems to be good for my chest. A positive thing. It
feels great to get out of my wheelchair.
Another positive thing is I started recreational pool therapy. I go to the pool and float
on my back. It feels great. As time goes on you start in the deep end walking, and end
up in the shallow end walking. But I’m not there yet. I only use the pool to relax at the
moment.
I don’t know why but when I got in the pool, I had an epiphany: I realized how messed
up I was. I have a long way to go to get better. I guess the fear I have of drowning if
someone dropped m in the water, I could easily drown. Not a comfortable feeling. I am
used to the water. I’m a water person. Worst comes to worst, I could hold my breath for
a long time. The trick is not to panic. Anyway, I believe water therapy really helps you.
I can’t wait to go more often. I have to get permission from my physical therapist.
This week, my mom got me out of the house, broke up my routine by bringing me to my
friend’s house. He has a great place about half an hour away. It was kind of bitter sweet
going there ‘cause it made me realize I have no home. I have nothing. I was happy for
him, because it’s a nice home. I guess one day I’ll have a home. Everyone says it’s just
a material thing, but it makes a difference having a home. I miss my home.
I’m searching for the profound thought of the day. I can’t think of one. Maybe we
should ask the dog. He’s been a good companion. What did Neal Young say, “A man
needs a maid.” Instead, I have a dog. He’s good for me because I seem to benefit from
having him. It works the hands because I pet him a lot and I play fetch with him. You
see, at this point in time, life becomes therapy. That’s my profound thought of the day!
Sunday, July 31, 2011
Chapter 17 – July 31, 2011
Something has been kicking my butt. I haven’t been feeling that great lately. It could
be the heat. Who knows? Anyway, never look back. Keep going forward. Even in
surfing we do that. A big wave might look huge look back. When you look forward,
you maintain balance and the wave doesn’t seem as big. I guess this is kind of like that.
A big wave. Life is funny. The other morning my aid was drinking coffee and thinking
about her up and coming wedding. I was sitting across from her thinking about my
imminent divorce. Ha. One door opens, another shuts. You never know what’s going to
happen.
I think I mentioned before, I used to run the mile. That’s four laps around a track. The
worst part of the mile race is lap three on the back stretch. You feel like hell. That’s how
I feel right now. I feel like I’m on lap three on the back stretch. It really helps having
people cheer you on. The therapy helps a lot as well. They will point out the positive
aspects of your progress. It’s really encouraging and helpful.
I finally got my glasses as well. Man, are they thick. They are prism glasses. They are
meant to help slow down the shaking of my eyes. It does help, but they are so thick that
they make me nauseous, and dizzy. I only wear them for a while during the day.
Other parts of therapy have been going well. I have been walking and doing more work
with my hands. I have to remember to be patient.
This weekend I went to my aid’s wedding. It was a beautiful day and I wished them all
the luck I can. It took a lot out of me to go there. I can handle noise and people a little
better, but it’s still tough. It was a good test, and it was great to get out of my routine. A
great day.
Other weird things have been happening. I seem to aspirate liquid more than before.
This causes me to cough a lot. I have been using thickener in my drinks, but it seems
to really stop me up. The doctor had to prescribe a laxative. Never a dull moment. I
cough frequently but it seems to be an upper respiratory area. Upper wind pipe. If it
was to move to the bottom of my lungs I might get pneumonia. This is what the nurse
said when she came to visit me. My friend came to write and had to endure one of my
coughing fits. Not a good sight. It would also really scare my daughter when I would
have a coughing attack. She would say, “Daddy, are you OK?” It would last about five
minutes. She was always so concerned. I tell you, I’m getting really sick of this. I’m
tired of coughing fits. I’m tired of my aids washing my balls, haaaa. Do I have your
attention? I’m tired of the shower chair. There’s a whole list of things I’m tired of. And
I’m sure my family, friends and aids are tired of it as well. It seems like it will never end.
OK, I’ll get off my soap box, stow it and stop bitching.
On a positive note, everyone says I’m getting better. It feels good. Even my eyes seem
to be getting better. Always look ahead. Never look back. See ya next week.
be the heat. Who knows? Anyway, never look back. Keep going forward. Even in
surfing we do that. A big wave might look huge look back. When you look forward,
you maintain balance and the wave doesn’t seem as big. I guess this is kind of like that.
A big wave. Life is funny. The other morning my aid was drinking coffee and thinking
about her up and coming wedding. I was sitting across from her thinking about my
imminent divorce. Ha. One door opens, another shuts. You never know what’s going to
happen.
I think I mentioned before, I used to run the mile. That’s four laps around a track. The
worst part of the mile race is lap three on the back stretch. You feel like hell. That’s how
I feel right now. I feel like I’m on lap three on the back stretch. It really helps having
people cheer you on. The therapy helps a lot as well. They will point out the positive
aspects of your progress. It’s really encouraging and helpful.
I finally got my glasses as well. Man, are they thick. They are prism glasses. They are
meant to help slow down the shaking of my eyes. It does help, but they are so thick that
they make me nauseous, and dizzy. I only wear them for a while during the day.
Other parts of therapy have been going well. I have been walking and doing more work
with my hands. I have to remember to be patient.
This weekend I went to my aid’s wedding. It was a beautiful day and I wished them all
the luck I can. It took a lot out of me to go there. I can handle noise and people a little
better, but it’s still tough. It was a good test, and it was great to get out of my routine. A
great day.
Other weird things have been happening. I seem to aspirate liquid more than before.
This causes me to cough a lot. I have been using thickener in my drinks, but it seems
to really stop me up. The doctor had to prescribe a laxative. Never a dull moment. I
cough frequently but it seems to be an upper respiratory area. Upper wind pipe. If it
was to move to the bottom of my lungs I might get pneumonia. This is what the nurse
said when she came to visit me. My friend came to write and had to endure one of my
coughing fits. Not a good sight. It would also really scare my daughter when I would
have a coughing attack. She would say, “Daddy, are you OK?” It would last about five
minutes. She was always so concerned. I tell you, I’m getting really sick of this. I’m
tired of coughing fits. I’m tired of my aids washing my balls, haaaa. Do I have your
attention? I’m tired of the shower chair. There’s a whole list of things I’m tired of. And
I’m sure my family, friends and aids are tired of it as well. It seems like it will never end.
OK, I’ll get off my soap box, stow it and stop bitching.
On a positive note, everyone says I’m getting better. It feels good. Even my eyes seem
to be getting better. Always look ahead. Never look back. See ya next week.
Tuesday, July 19, 2011
Chapter 16 - July 19, 2011
We are in the middle of a heat wave. I have to share something funny I heard the other
day, from actor Zach Brath: There was a really hot girl standing on the street s of New
York. She said, as she wiped the sweat from her brow, “Lord, if hell is hotter than this,
I’m going to have to change my ways.” Ha ha ha. That’s how hot it is here.
I stay inside near an air conditioning unit. It seems the heat and humidity really get to
me. I guess the brain stem regulates body temperature. Remember, mine is damaged
from the traumatic brain injury. Anyway, that’s boring. The joke I thought was funny
though.
My friend Julie came over with her two boys. They went for a swim with my daughter,
Sam. I wish I could go swimming. It’ll happen. It’ll have to be next year. I have to be
patient.
I’m such a big baby. I’ve been falling out of bed for the past few nights. I’ve been
having my mom stay near my room to help me if I need help. I still wake up at night in a
panic sometimes. Or I fall out of bed sometimes. When will this all end? It’s such a big
mess.
My shrink came by today and she noticed a difference from the last week. She said I
looked and sounded better. That’s always encouraging. I don’t think she’d lie. Why
would you lie to a guy in a wheelchair? Anyway, it’s good news for me to hear that.
My daughter has been running around the house. She is really enjoying herself, and it
makes me happy to see her. I remember she will be leaving soon. It’s such a drag.
I have been going to therapy when my daughter goes to camp. They have been working
on my walking. It’ll feel so good to walk. As I was walking down one hall I realized that
this walking is like running a race. Each step you take is an effort, and well thought out.
I’m always exhausted at the end of each session. It’s exhausting, but so important. You’ll
come to welcome therapy and dred it at the same time. It’s a lot of work, hard work. But
I’m willing and ready to train to get better. I’ll never give up until they throw dirt on my
box.
On a positive note, I got a pdf file from my friend who I’m doing a book with. It looks
great. Her words and my photographs. It’s more of a spiritual book, self help book. My
next book will be based on this blog. I’ll keep you posted.
See you next time.
day, from actor Zach Brath: There was a really hot girl standing on the street s of New
York. She said, as she wiped the sweat from her brow, “Lord, if hell is hotter than this,
I’m going to have to change my ways.” Ha ha ha. That’s how hot it is here.
I stay inside near an air conditioning unit. It seems the heat and humidity really get to
me. I guess the brain stem regulates body temperature. Remember, mine is damaged
from the traumatic brain injury. Anyway, that’s boring. The joke I thought was funny
though.
My friend Julie came over with her two boys. They went for a swim with my daughter,
Sam. I wish I could go swimming. It’ll happen. It’ll have to be next year. I have to be
patient.
I’m such a big baby. I’ve been falling out of bed for the past few nights. I’ve been
having my mom stay near my room to help me if I need help. I still wake up at night in a
panic sometimes. Or I fall out of bed sometimes. When will this all end? It’s such a big
mess.
My shrink came by today and she noticed a difference from the last week. She said I
looked and sounded better. That’s always encouraging. I don’t think she’d lie. Why
would you lie to a guy in a wheelchair? Anyway, it’s good news for me to hear that.
My daughter has been running around the house. She is really enjoying herself, and it
makes me happy to see her. I remember she will be leaving soon. It’s such a drag.
I have been going to therapy when my daughter goes to camp. They have been working
on my walking. It’ll feel so good to walk. As I was walking down one hall I realized that
this walking is like running a race. Each step you take is an effort, and well thought out.
I’m always exhausted at the end of each session. It’s exhausting, but so important. You’ll
come to welcome therapy and dred it at the same time. It’s a lot of work, hard work. But
I’m willing and ready to train to get better. I’ll never give up until they throw dirt on my
box.
On a positive note, I got a pdf file from my friend who I’m doing a book with. It looks
great. Her words and my photographs. It’s more of a spiritual book, self help book. My
next book will be based on this blog. I’ll keep you posted.
See you next time.
Friday, July 15, 2011
Chapter 15 – July 15, 2011
Sam came back to visit me for 2 whole weeks. Yay! It’s been great having her here. My
Mom & I talked about activities for her. It’s been a lot of work but we seem to have a
good list of things for her to do with me. I try to get involved as best I can. Considering
my condition. I do a lot of watching right now. But it’s great to see her play. She sucks
the life out of me though. I have a full time baby sitter. That helps a lot. And I have my
aids help me. That helps a lot.
While Sam was away at camp, I went to my therapy, and they kicked my butt today. It’s
hard work. Any car or van movement seems to really affect me. It’s not car sickness,
but it’s like being totally out of it. Really tired and lethargic. It’s also been very hot and
humid out. That seems to affect me as well. Stay cool.
It’s great to be home and not at a rehab hospital. But, it’s also very difficult. Imagine,
I’m 50, living at home. I have no one to talk to but the dog. And the dog talking back.
Just kidding. It is tough to see your parents getting old. I think I need to go to therapy
just for that. Anyway, they’re doing a great job looking after me. It must be tough on
them. I think I mentioned going to therapy today, they tested me again and noticed
improvement. So, yes. I am getting better, but it’s a long journey. Your victories are
very small, but they do happen.
I want to thank my friend Julie, again, for typing this for me. That’s the profound
thought of the day.
I met with some filmmakers the other day. They do documentaries. I think this journey
would make a good documentary. They seem interested. I meet with them again soon.
If it helps one person, it’s worth it. Remember, I said it before, I’ll say it again, there’s
going to be a lot of boys and girls coming back from the wars with similar injuries.
Traumatic brain injury. This may be a tool, a way of maybe looking at the future. Not
exactly a crystal ball because everyone’s different, but it will give everyone an idea of
what to expect.
I’m going to go back to watching Sam swim in my sister’s pool. She gets along great
with my sisters kids. It’s fun to watch them play but it’s a little bittersweet. I would love
to go swimming and play with them, but yet here I sit. What a drag.
I do want to mention something. It seems right about now, things get to you mentally.
Mind you, my eyes have been jumping up and down for two years now. It’s making me
a little loopy. Only break I seem to get is when I close my eyes. I wear dark sunglasses
at the moment, so people don’t know my eyes are closed. This was what my therapist
recommended. I feel like I could go surfing again. It’s nice to wear sunglasses. It makes
me feel normal. It does look a little strange when you’re out at night. But who said I
wasn’t strange.
O.K. I’ll talk to you later.
P.S. My cousin did have a baby girl! It was a full moon, and her name is Luna. She was
born on Bastille Day. How cool is that.
Mom & I talked about activities for her. It’s been a lot of work but we seem to have a
good list of things for her to do with me. I try to get involved as best I can. Considering
my condition. I do a lot of watching right now. But it’s great to see her play. She sucks
the life out of me though. I have a full time baby sitter. That helps a lot. And I have my
aids help me. That helps a lot.
While Sam was away at camp, I went to my therapy, and they kicked my butt today. It’s
hard work. Any car or van movement seems to really affect me. It’s not car sickness,
but it’s like being totally out of it. Really tired and lethargic. It’s also been very hot and
humid out. That seems to affect me as well. Stay cool.
It’s great to be home and not at a rehab hospital. But, it’s also very difficult. Imagine,
I’m 50, living at home. I have no one to talk to but the dog. And the dog talking back.
Just kidding. It is tough to see your parents getting old. I think I need to go to therapy
just for that. Anyway, they’re doing a great job looking after me. It must be tough on
them. I think I mentioned going to therapy today, they tested me again and noticed
improvement. So, yes. I am getting better, but it’s a long journey. Your victories are
very small, but they do happen.
I want to thank my friend Julie, again, for typing this for me. That’s the profound
thought of the day.
I met with some filmmakers the other day. They do documentaries. I think this journey
would make a good documentary. They seem interested. I meet with them again soon.
If it helps one person, it’s worth it. Remember, I said it before, I’ll say it again, there’s
going to be a lot of boys and girls coming back from the wars with similar injuries.
Traumatic brain injury. This may be a tool, a way of maybe looking at the future. Not
exactly a crystal ball because everyone’s different, but it will give everyone an idea of
what to expect.
I’m going to go back to watching Sam swim in my sister’s pool. She gets along great
with my sisters kids. It’s fun to watch them play but it’s a little bittersweet. I would love
to go swimming and play with them, but yet here I sit. What a drag.
I do want to mention something. It seems right about now, things get to you mentally.
Mind you, my eyes have been jumping up and down for two years now. It’s making me
a little loopy. Only break I seem to get is when I close my eyes. I wear dark sunglasses
at the moment, so people don’t know my eyes are closed. This was what my therapist
recommended. I feel like I could go surfing again. It’s nice to wear sunglasses. It makes
me feel normal. It does look a little strange when you’re out at night. But who said I
wasn’t strange.
O.K. I’ll talk to you later.
P.S. My cousin did have a baby girl! It was a full moon, and her name is Luna. She was
born on Bastille Day. How cool is that.
Tuesday, July 5, 2011
Chapter 14 - July 5, 2011
My daughter left for Texas the other day. It was great to have her here. It reminds me
that what is really important is kindness and compassion. You see, it’s really almost like
being reborn again. You’re like a baby. You’re natural reaction to a baby is kindness
and compassion. I guess that’s what it all comes down to when you’re sick like this.
Anyway, Sam gives a lot of kindness and compassion and it made me realize that’s all
you really need. That’s my profound thought of the day.
This week was the 4th of July weekend, and friends encouraged me to go out. It’s good
to break up the routine of therapy and healing. I went out to listen to music. I thought
the noise would really bother me as it has in the past, but I found I could deal with it. It
was good. It was great to go out, though it made me real tired. Every little move was
like running a marathon, which brings me to a thought: When you go home after being in
the hospital so long, be very careful. You will get so tired. I guess you call it “stimulus
overload.” I find it to be very tiring. I’m still not used to it yet, and it’s been 8 or 9
months since I came home. Going through this stupid divorce doesn’t help. It’s a fact
that my wife is suing me for divorce, but I’m not supposed to talk about that so you could
draw your own conclusions.
Oh yeah! Anyone know how to make a Voodoo Doll? Just kidding. I don’t think one is
needed. Remember, live by the sword, die by the sword. And if you don’t have anything
nice to say, don’t say anything at all. I’ll leave it at that. I put away my soapbox.
I will say one thing though, you’ll find, I think I mentioned this before, you will find
people react differently to your illness. You’ll discover who your true friends are and
who is really a good person. Remember, kindness and compassion.
I would like to share a story with you. While I was in therapy, my mother brought Sam
upstairs to see a fellow friend on the 2nd floor. When Sam arrived on the 2nd floor, she
saw balloons at the nurses’ station. She asked, “What are those balloons for?” and the
nurse replied, “Oh, it’s a patient’s birthday.” Sam said can I see the patient? The nurse
replied, “You’ll have to ask her family if it’s o.k.” Sam said, “Where are they?” She got
permission, went into the room and saw the patient. Imagine Jaba the Hut lying in bed
with tubes coming out of her. But Sam had no fear. She belted out, “Happy Birthday”
song to the mean woman, the patient. When Sam was done, she left the room with the
patient smiling ear to ear. Remember, kindness and compassion. She has a good heart.
Anyway, I just wanted to share that with you.
The county nurse has provided a shrink to come and see me. It’s really important to
unload your fears and questions. I don’t know how you go about doing it, but she seems
to help. Hey, whatever gets you by. Could be friends, family, or professional.
The other day, I was in therapy, my occupational therapist noticed a bite on my arm.
It was a tick bite with a bullseye. I probably got it from the dog. They put me on an
antibiotic because I seemed weak and had a fever and had been throwing up. So after
speaking to my neurologist, I started taking antibiotics. But they’re kicking my butt. I’m
tired all the time and I feel stiff all over. It’s hard to even lift up my arms. Brings out
claustrophobia in a big way, and makes it very difficult to talk. I always remember what
my neurologist said. He said, anything you catch, you’ll feel a hundred times over. I
must have lyme disease, or at least I can really feel the effect of the antibiotics.
If it’s not one thing, it’s another. I can’t seem to catch a break. Talk about being up
against the ropes. Oh man. I can’t even watch TV. My eyes are still jumping. It seems
the only break I get is when I sleep. It’s kind of cool. I look forward to being in my
dreams of running or surfing or playing with my daughter. So when I wake up, I always
look forward to being normal, but I’m greeted with the same old bullshit over and over. I
can’t walk, I can’t see. No one understands me. I can’t talk properly. Back to training.
This might sound corny, if you’re healthy, thank God, or whatever you believe in that
you’re normal. I mean, the fact that you can stand up and go get a glass of water and
drink it, is a miracle. Be thankful for what you’ve got. They took away my damn
driver’s license. Can you believe it. That would be interesting to see me drive. Ha. Be
thankful you can drive. I could drive, but I’m sure I’d take out a few trees. Ha.
Anyway, I’ll talk to you guys later. B. Nice.
P.S. I just wanted to give a shout out to my cousin and his wife. They’re about to have
a baby. I’m really proud of them. They helped me get through some really tough times.
Now they’ll be rewarded with a beautiful baby. Good job you guys. Well done.
that what is really important is kindness and compassion. You see, it’s really almost like
being reborn again. You’re like a baby. You’re natural reaction to a baby is kindness
and compassion. I guess that’s what it all comes down to when you’re sick like this.
Anyway, Sam gives a lot of kindness and compassion and it made me realize that’s all
you really need. That’s my profound thought of the day.
This week was the 4th of July weekend, and friends encouraged me to go out. It’s good
to break up the routine of therapy and healing. I went out to listen to music. I thought
the noise would really bother me as it has in the past, but I found I could deal with it. It
was good. It was great to go out, though it made me real tired. Every little move was
like running a marathon, which brings me to a thought: When you go home after being in
the hospital so long, be very careful. You will get so tired. I guess you call it “stimulus
overload.” I find it to be very tiring. I’m still not used to it yet, and it’s been 8 or 9
months since I came home. Going through this stupid divorce doesn’t help. It’s a fact
that my wife is suing me for divorce, but I’m not supposed to talk about that so you could
draw your own conclusions.
Oh yeah! Anyone know how to make a Voodoo Doll? Just kidding. I don’t think one is
needed. Remember, live by the sword, die by the sword. And if you don’t have anything
nice to say, don’t say anything at all. I’ll leave it at that. I put away my soapbox.
I will say one thing though, you’ll find, I think I mentioned this before, you will find
people react differently to your illness. You’ll discover who your true friends are and
who is really a good person. Remember, kindness and compassion.
I would like to share a story with you. While I was in therapy, my mother brought Sam
upstairs to see a fellow friend on the 2nd floor. When Sam arrived on the 2nd floor, she
saw balloons at the nurses’ station. She asked, “What are those balloons for?” and the
nurse replied, “Oh, it’s a patient’s birthday.” Sam said can I see the patient? The nurse
replied, “You’ll have to ask her family if it’s o.k.” Sam said, “Where are they?” She got
permission, went into the room and saw the patient. Imagine Jaba the Hut lying in bed
with tubes coming out of her. But Sam had no fear. She belted out, “Happy Birthday”
song to the mean woman, the patient. When Sam was done, she left the room with the
patient smiling ear to ear. Remember, kindness and compassion. She has a good heart.
Anyway, I just wanted to share that with you.
The county nurse has provided a shrink to come and see me. It’s really important to
unload your fears and questions. I don’t know how you go about doing it, but she seems
to help. Hey, whatever gets you by. Could be friends, family, or professional.
The other day, I was in therapy, my occupational therapist noticed a bite on my arm.
It was a tick bite with a bullseye. I probably got it from the dog. They put me on an
antibiotic because I seemed weak and had a fever and had been throwing up. So after
speaking to my neurologist, I started taking antibiotics. But they’re kicking my butt. I’m
tired all the time and I feel stiff all over. It’s hard to even lift up my arms. Brings out
claustrophobia in a big way, and makes it very difficult to talk. I always remember what
my neurologist said. He said, anything you catch, you’ll feel a hundred times over. I
must have lyme disease, or at least I can really feel the effect of the antibiotics.
If it’s not one thing, it’s another. I can’t seem to catch a break. Talk about being up
against the ropes. Oh man. I can’t even watch TV. My eyes are still jumping. It seems
the only break I get is when I sleep. It’s kind of cool. I look forward to being in my
dreams of running or surfing or playing with my daughter. So when I wake up, I always
look forward to being normal, but I’m greeted with the same old bullshit over and over. I
can’t walk, I can’t see. No one understands me. I can’t talk properly. Back to training.
This might sound corny, if you’re healthy, thank God, or whatever you believe in that
you’re normal. I mean, the fact that you can stand up and go get a glass of water and
drink it, is a miracle. Be thankful for what you’ve got. They took away my damn
driver’s license. Can you believe it. That would be interesting to see me drive. Ha. Be
thankful you can drive. I could drive, but I’m sure I’d take out a few trees. Ha.
Anyway, I’ll talk to you guys later. B. Nice.
P.S. I just wanted to give a shout out to my cousin and his wife. They’re about to have
a baby. I’m really proud of them. They helped me get through some really tough times.
Now they’ll be rewarded with a beautiful baby. Good job you guys. Well done.
Tuesday, June 28, 2011
Chapter 13 - June 28, 2011
After thinking about it, make sure your insurance is updated. You never know what’s
next. Be sure you’re covered for traumatic incident. Especially therapy. I said it before
and I’ll say it again, make sure you read the fine print. I was lucky. My insurance
covered almost everything, although, it was a lot of work. You have to make sure you
have a point person. Most therapists roll their eyes and run the other way when you
mention insurance. It’s such a game, a raquet. You really have to be on top of things.
I’ve seen some crazy things happen to people who really needed insurance. Anyway, I’ll
get off my soap box and stow my megaphone for now, because if I get into it, I get really
pissed off. Just make sure you cover your ass. I never, in my wildest dreams, thought I’d
be here in this situation.
On top of things, my wife left me and sued me for divorce. It makes my insurance
situation even more complicated. Most hospitals like mine will issue a social worker
to help you, but if you want something done properly, you have to do it yourself, or at
least really get involved. After all, it doesn’t help my recovery to have to deal with all
this stuff. It seems to make things worse. I mean, I can’t even get a wheelchair I need.
By the time I get it, I’ll probably be walking again. So stupid. Anyway, don’t get me
started, ha, ha.
I did have a mental break this week. My daughter came to visit me. She was supposed
to be here on Father’s day, but that’s a whole other story. She’s been so great. It really
means a lot to me to have her around., even if it’s only for a short time. Because my
time with her is so short I try to pack as much in as possible. It was cool, she said to me,
remember she’s only 4 and a half. She said to me, Daddy, your speech is much better.
Wait, she said, your talking is much better. I had her come to therapy and had her stick
around when I walked with the therapist. I thought it was important that she see I’m
getting better.
All the pain and suffering goes away when you hear those simple words, “Yay! Yay
Daddy!” That was when I was walking last week. That was 8 months after my second
operation. And it’s been great having her here. She’s a handful though. 4 and a half.
I think if we could harness her energy, you could run your city for one day. Man, that
kid’s got some energy. It’s tough though because all that energy makes me so tired.
Thank God my family and friends are here to play with her and take care of her.
I’ve been pushing to do water therapy in the pool but my main therapist wants me to
wait a little longer. They want me to do more weight bearing exercises. It’s frustrating
cause I’m really antsy to get in the water. It helped me so much after the first operation.
I’m going to talk to them again this week. Being in the water helps one’s balance and
coordination. And really helps your overall therapy, I believe.
Speaking of overall therapy, the woman, Barbara, who is in charge of all the wheelchairs
is amazing. It really is an art form I never knew about, and it’s rare that you can get
a customized chair to your needs. Most chairs you can get are for generic cookie
cutter chairs. There’s a big difference. I never knew it but you can tell. Anyway, the
wheelchair place has been very helpful. You see, as you get better you will receive tools
like a wheelchair or a walker or a lift to assist you in getting better. When you’re done
with them, you just move on to the next thing. I remember sitting in a wheelchair for the
first time. I felt so restricted and confined. When actually it will give you more freedom
to move about and it will keep you safe. Remember that in many cases it’s just a step in
the long journey of healing. Don’t get hung up on the tools.
I think I’ll go play with my daughter now. I’ll see you all later.
next. Be sure you’re covered for traumatic incident. Especially therapy. I said it before
and I’ll say it again, make sure you read the fine print. I was lucky. My insurance
covered almost everything, although, it was a lot of work. You have to make sure you
have a point person. Most therapists roll their eyes and run the other way when you
mention insurance. It’s such a game, a raquet. You really have to be on top of things.
I’ve seen some crazy things happen to people who really needed insurance. Anyway, I’ll
get off my soap box and stow my megaphone for now, because if I get into it, I get really
pissed off. Just make sure you cover your ass. I never, in my wildest dreams, thought I’d
be here in this situation.
On top of things, my wife left me and sued me for divorce. It makes my insurance
situation even more complicated. Most hospitals like mine will issue a social worker
to help you, but if you want something done properly, you have to do it yourself, or at
least really get involved. After all, it doesn’t help my recovery to have to deal with all
this stuff. It seems to make things worse. I mean, I can’t even get a wheelchair I need.
By the time I get it, I’ll probably be walking again. So stupid. Anyway, don’t get me
started, ha, ha.
I did have a mental break this week. My daughter came to visit me. She was supposed
to be here on Father’s day, but that’s a whole other story. She’s been so great. It really
means a lot to me to have her around., even if it’s only for a short time. Because my
time with her is so short I try to pack as much in as possible. It was cool, she said to me,
remember she’s only 4 and a half. She said to me, Daddy, your speech is much better.
Wait, she said, your talking is much better. I had her come to therapy and had her stick
around when I walked with the therapist. I thought it was important that she see I’m
getting better.
All the pain and suffering goes away when you hear those simple words, “Yay! Yay
Daddy!” That was when I was walking last week. That was 8 months after my second
operation. And it’s been great having her here. She’s a handful though. 4 and a half.
I think if we could harness her energy, you could run your city for one day. Man, that
kid’s got some energy. It’s tough though because all that energy makes me so tired.
Thank God my family and friends are here to play with her and take care of her.
I’ve been pushing to do water therapy in the pool but my main therapist wants me to
wait a little longer. They want me to do more weight bearing exercises. It’s frustrating
cause I’m really antsy to get in the water. It helped me so much after the first operation.
I’m going to talk to them again this week. Being in the water helps one’s balance and
coordination. And really helps your overall therapy, I believe.
Speaking of overall therapy, the woman, Barbara, who is in charge of all the wheelchairs
is amazing. It really is an art form I never knew about, and it’s rare that you can get
a customized chair to your needs. Most chairs you can get are for generic cookie
cutter chairs. There’s a big difference. I never knew it but you can tell. Anyway, the
wheelchair place has been very helpful. You see, as you get better you will receive tools
like a wheelchair or a walker or a lift to assist you in getting better. When you’re done
with them, you just move on to the next thing. I remember sitting in a wheelchair for the
first time. I felt so restricted and confined. When actually it will give you more freedom
to move about and it will keep you safe. Remember that in many cases it’s just a step in
the long journey of healing. Don’t get hung up on the tools.
I think I’ll go play with my daughter now. I’ll see you all later.
Thursday, June 16, 2011
Chapter 12 - June 16, 2011
So here’s my profound thought of the day: Many years ago, when I was young, I had
a summer job renting out boats. I witnessed 4 people drowning. They were swimming
from a boat. It was violence in its purest form. They were all killing themselves or
killing each other to save themselves. By the time I got to them, they were all under.
I couldn’t save anybody. They all drowned. This brings me to the current time when
you see someone drowning, sometimes you can’t help them. They may kill you as well.
They might bring you down as well. Sometimes you just have to let people drown. I
knew if I got to those guys many years ago, they would have killed me as well. Oh yeah,
ha ha. I just remembered I got divorced last week, speaking of that. Ha ha. Divorce is
like a death. It is a death, a death of a relationship. Your whole life changes. I’m just
angry at the other team. I’m upset but time is a great healer.
I went to my old stomping ground the other day. I saw my friends I surfed with. It was
a great escape. It was a little bittersweet as it was a town I used to live in when I was
married and had my daughter. I saw my old house, etc. I am glad I went, though I’m
very tired from the experience.
Overall, it’s been a tough few weeks. My body is changing. Something is changing.
I feel very tight in my face, my thoat, my chest, my hands. But I still have a positive
thought on the future. The future is wide open. I can do whatever I want. I’m starting
over again. Kind of a cool thing. But, it’s like a circus act. You have no safety net.
My friend Julie, just asked me if I was feeling my body more. If I was, I guess, more
sensitive. I don’t know the answer to that question. All I know is I’m sick of this shit. It
would be great to wake up one day and be normal.
Well, it’s back to work tomorrow. I go to therapy again. I think I said it before, but I
just wish I would get a break. Someone throw me a bone! Heh. Even hardcore training
on the track team, you get a break. I feel like I’m pushing and pushing and pushing, but
there’s never any positive outcome that I can see. Other people tell you, “Oh, I can see a
little difference.” That helps immensely.
Anyway, that’s it for now. I just also wanted to thank my mom because she drove me
out there and she helped me to the beach. She’s like a super-mom. When you’re sick
like this, a TBI victim, you really need a point person, someone to run your life because
there’s no way you could do it alone.
Anyway, back to work. I’ll talk to you guys later. Bye for now.
a summer job renting out boats. I witnessed 4 people drowning. They were swimming
from a boat. It was violence in its purest form. They were all killing themselves or
killing each other to save themselves. By the time I got to them, they were all under.
I couldn’t save anybody. They all drowned. This brings me to the current time when
you see someone drowning, sometimes you can’t help them. They may kill you as well.
They might bring you down as well. Sometimes you just have to let people drown. I
knew if I got to those guys many years ago, they would have killed me as well. Oh yeah,
ha ha. I just remembered I got divorced last week, speaking of that. Ha ha. Divorce is
like a death. It is a death, a death of a relationship. Your whole life changes. I’m just
angry at the other team. I’m upset but time is a great healer.
I went to my old stomping ground the other day. I saw my friends I surfed with. It was
a great escape. It was a little bittersweet as it was a town I used to live in when I was
married and had my daughter. I saw my old house, etc. I am glad I went, though I’m
very tired from the experience.
Overall, it’s been a tough few weeks. My body is changing. Something is changing.
I feel very tight in my face, my thoat, my chest, my hands. But I still have a positive
thought on the future. The future is wide open. I can do whatever I want. I’m starting
over again. Kind of a cool thing. But, it’s like a circus act. You have no safety net.
My friend Julie, just asked me if I was feeling my body more. If I was, I guess, more
sensitive. I don’t know the answer to that question. All I know is I’m sick of this shit. It
would be great to wake up one day and be normal.
Well, it’s back to work tomorrow. I go to therapy again. I think I said it before, but I
just wish I would get a break. Someone throw me a bone! Heh. Even hardcore training
on the track team, you get a break. I feel like I’m pushing and pushing and pushing, but
there’s never any positive outcome that I can see. Other people tell you, “Oh, I can see a
little difference.” That helps immensely.
Anyway, that’s it for now. I just also wanted to thank my mom because she drove me
out there and she helped me to the beach. She’s like a super-mom. When you’re sick
like this, a TBI victim, you really need a point person, someone to run your life because
there’s no way you could do it alone.
Anyway, back to work. I’ll talk to you guys later. Bye for now.
Sunday, June 12, 2011
Chapter 11 - June 12, 2011
I’m not sure if I shared this with you, but my injury is named Traumatic Brain Injury.
They have one floor at the rehab hospital just for people like me. TBI, that’s what they
call us. I’m in the same category as the soldiers that come back from Iraq, FBI agents,
federal judges, housewives, car accident victims, etc. I was in this special group, and
you have to remember, each person and each case is uniquely different. There’s no game
plan. There was no All Knowing of what’s going to happen. You kind of go with the
flow and make up your own world. The brain is an amazing organ. I’ve seen people that
were shot in the head walk out the door in months. Our cousins, the stroke victims, were
just down the hall. I saw them come and go as well. You never know what’s around the
corner. I could be better next week. Let’s hope, at least.
Anyway, I just wanted to share that with you. That’s all for now. See you soon.
They have one floor at the rehab hospital just for people like me. TBI, that’s what they
call us. I’m in the same category as the soldiers that come back from Iraq, FBI agents,
federal judges, housewives, car accident victims, etc. I was in this special group, and
you have to remember, each person and each case is uniquely different. There’s no game
plan. There was no All Knowing of what’s going to happen. You kind of go with the
flow and make up your own world. The brain is an amazing organ. I’ve seen people that
were shot in the head walk out the door in months. Our cousins, the stroke victims, were
just down the hall. I saw them come and go as well. You never know what’s around the
corner. I could be better next week. Let’s hope, at least.
Anyway, I just wanted to share that with you. That’s all for now. See you soon.
Tuesday, May 31, 2011
Chapter 10 - May 31, 2011
My friend Julie, who’s writing this, noticed some improvement. Like I’m more
expressive with my hands. Other friends say my speech is clearer. There are definite
improvements, but on the other hand, I had a week from hell, ha ha. I think I’m at that
angry stage. I imagine you go through different emotions. Right now I’m pissed off.
I always remember my doctor saying, “Have patience.” How do you keep biting your
tongue and not being able to move or walk, etc., etc. Oh, I had an epiphany! I just
remembered something. I was sitting on the porch as I do in the hours of the day, looking
at a tree, thinking, life is like water. You have an idea where it’s going, but you never are
sure where it will end up. That’s my profound statement of the day, that day.
I did have and I’m still having a rough week. I think I’m more aware of my body. I’m
waking up I guess. I remember in therapy as I was walking I was thinking, damn, I’ve
come a long way, and then I remembered, I still have a long way to go, and a lot of hard
work to do. I think I’m tired. I need a vacation. But you can’t run away from yourself. I
guess that’s profound. That’s number two.
My friend invited me to Paris. He has openings in some hotel in Paris. I’d love to go,
but I can’t fly anywhere. I’m thinking of taking a boat one day, a steam ship. This week
I was going to keep myself occupied so we transformed the front room into my living
space. It gives me a sense of privacy and I can still go on to the deck. I’m trying to turn
this great house into a location. Make the house work for my parents for a change. It’s a
great location. I’ve worked here many times before. A commercial place down the road
also offered their grounds as a location. So I’ll combine the two.
I think, to make a living these days, you have to almost have two businesses. I have
photography, but I’m thinking of also starting another one with a friend of mine that I
grew up with. I can’t tell you what it is, but I think it’s a good idea. It’s fun to start a
new enterprise. Hey, I’ve got nothing but time to think of new ideas.
I guess that’s it for this blog. We’ll be in touch next week. Remember, stay positive.
See you later. Bye.
expressive with my hands. Other friends say my speech is clearer. There are definite
improvements, but on the other hand, I had a week from hell, ha ha. I think I’m at that
angry stage. I imagine you go through different emotions. Right now I’m pissed off.
I always remember my doctor saying, “Have patience.” How do you keep biting your
tongue and not being able to move or walk, etc., etc. Oh, I had an epiphany! I just
remembered something. I was sitting on the porch as I do in the hours of the day, looking
at a tree, thinking, life is like water. You have an idea where it’s going, but you never are
sure where it will end up. That’s my profound statement of the day, that day.
I did have and I’m still having a rough week. I think I’m more aware of my body. I’m
waking up I guess. I remember in therapy as I was walking I was thinking, damn, I’ve
come a long way, and then I remembered, I still have a long way to go, and a lot of hard
work to do. I think I’m tired. I need a vacation. But you can’t run away from yourself. I
guess that’s profound. That’s number two.
My friend invited me to Paris. He has openings in some hotel in Paris. I’d love to go,
but I can’t fly anywhere. I’m thinking of taking a boat one day, a steam ship. This week
I was going to keep myself occupied so we transformed the front room into my living
space. It gives me a sense of privacy and I can still go on to the deck. I’m trying to turn
this great house into a location. Make the house work for my parents for a change. It’s a
great location. I’ve worked here many times before. A commercial place down the road
also offered their grounds as a location. So I’ll combine the two.
I think, to make a living these days, you have to almost have two businesses. I have
photography, but I’m thinking of also starting another one with a friend of mine that I
grew up with. I can’t tell you what it is, but I think it’s a good idea. It’s fun to start a
new enterprise. Hey, I’ve got nothing but time to think of new ideas.
I guess that’s it for this blog. We’ll be in touch next week. Remember, stay positive.
See you later. Bye.
Monday, May 2, 2011
Chapter 9 - May 2, 2011
She’s only 4 and a half. She said to me, Daddy, your speech is much better.
Wait, she said, your talking is much better. I had her come to therapy and had her stick
around when I walked with the therapist. I thought it was important that she see I’m
getting better.
All the pain and suffering goes away when you hear those simple words, “Yay! Yay
Daddy!” That was when I was walking last week. That was 8 months after my second
operation. And it’s been great having her here. She’s a handful though. 4 and a half.
I think if we could harness her energy, you could run your city for one day. Man, that
kid’s got some energy. It’s tough though because all that energy makes me so tired.
Thank God my family and friends are here to play with her and take care of her.
I’ve been pushing to do water therapy in the pool but my main therapist wants me to
wait a little longer. They want me to do more weight bearing exercises. It’s frustrating
cause I’m really antsy to get in the water. It helped me so much after the first operation.
I’m going to talk to them again this week. Being in the water helps one’s balance and
coordination. And really helps your overall therapy, I believe.
Speaking of overall therapy, the woman, Barbara, who is in charge of all the wheelchairs
is amazing. It really is an art form I never knew about, and it’s rare that you can get
a customized chair to your needs. Most chairs you can get are for generic cookie
cutter chairs. There’s a big difference. I never knew it but you can tell. Anyway, the
wheelchair place has been very helpful. You see, as you get better you will receive tools
like a wheelchair or a walker or a lift to assist you in getting better. When you’re done
with them, you just move on to the next thing. I remember sitting in a wheelchair for the
first time. I felt so restricted and confined. When actually it will give you more freedom
to move about and it will keep you safe. Remember that in many cases it’s just a step in
the long journey of healing. Don’t get hung up on the tools.
I think I’ll go play with my daughter now. I’ll see you all later.
Wait, she said, your talking is much better. I had her come to therapy and had her stick
around when I walked with the therapist. I thought it was important that she see I’m
getting better.
All the pain and suffering goes away when you hear those simple words, “Yay! Yay
Daddy!” That was when I was walking last week. That was 8 months after my second
operation. And it’s been great having her here. She’s a handful though. 4 and a half.
I think if we could harness her energy, you could run your city for one day. Man, that
kid’s got some energy. It’s tough though because all that energy makes me so tired.
Thank God my family and friends are here to play with her and take care of her.
I’ve been pushing to do water therapy in the pool but my main therapist wants me to
wait a little longer. They want me to do more weight bearing exercises. It’s frustrating
cause I’m really antsy to get in the water. It helped me so much after the first operation.
I’m going to talk to them again this week. Being in the water helps one’s balance and
coordination. And really helps your overall therapy, I believe.
Speaking of overall therapy, the woman, Barbara, who is in charge of all the wheelchairs
is amazing. It really is an art form I never knew about, and it’s rare that you can get
a customized chair to your needs. Most chairs you can get are for generic cookie
cutter chairs. There’s a big difference. I never knew it but you can tell. Anyway, the
wheelchair place has been very helpful. You see, as you get better you will receive tools
like a wheelchair or a walker or a lift to assist you in getting better. When you’re done
with them, you just move on to the next thing. I remember sitting in a wheelchair for the
first time. I felt so restricted and confined. When actually it will give you more freedom
to move about and it will keep you safe. Remember that in many cases it’s just a step in
the long journey of healing. Don’t get hung up on the tools.
I think I’ll go play with my daughter now. I’ll see you all later.
Tuesday, April 26, 2011
Chapter 8 - April 26, 2011
Well, I’m officially over the novelty of this bullshit. Things seem so difficult right now.
It’s true, when you get a cold it seems so much worse. Not only that, but I’ve got to deal
with my divorce as well. Not fun. I don’t know if you’ve been through a divorce before.
I have. It’s like a death. Not an easy thing to do when you’re in this condition. Anyway,
live in the moment. Don’t dwell upon the past, and don’t think about the future. Just be
in the moment. That’s what I try to do.
It’s great to have family and friends remind you that you are getting better. They’re
either telling the truth or they’re really good at blowing smoke up my ass. I mean, come
on. What are you going to tell a guy in my condition he’s not getting better. Anyway, it
does help. Always think positive.
Therapy has been going good. I graduated from the light gate to the treadmill. That’s
a positive thing. They have me walking on my own with help (as much as possible).
When I do physical therapy and occupational therapy, I work on my hands and my arms.
She also helps me with my sight. By the end of those sessions I’m usually wiped out. I
have an ambulette van pick me up and bring me home. This is provided by the county.
You’ll learn that the county nurse is very helpful in getting you what you need. You’ll
have your primary insurance and you’ll want to try to apply for Medicaid if you’re
qualified. I don’t understand the whole insurance game, but it seems so complicated. I
can’t imagine doing it myself right now. At the moment, my mother has been doing her
best to get me what I need, wheelchairs, showers, aides, etc. One good thing my wife did
before she left for Texas was to get me on Medicaid. That has proven to help a lot.
I will never understand what happened as far as my relationship to her. I guess that’s
a whole other book. But I could tell you one thing, it doesn’t help being here alone. I
mean, I have my family and friends, but it’s really not the same as having your spouse by
your side. I would also have my child with me too. But I guess it’s just not to be. What
doesn’t kill you makes you stronger, right? Sometimes I wonder.
There have been small improvements. I can stand up better without help. I’m learning
how to feed myself and it’s becoming easier and easier. Just seems so slow. I guess,
after my first operation, I really excelled, that’s why the hospital gave me an award. It
just makes this recovery so much more difficult.
Some people say my speech is getting better. I feel it’s very difficult to talk. At least
things are changing.
Today was the first real warm day after the winter. I spent most of the day just sitting
outside in the fresh air. It felt so good. It’s what I’ve wanted to do for a long time. I
used to dream about these moments in the ICU after my operation. It would get me
through the hard times. So when you’re having a bad day, just picture yourself in a
beautiful spot and just for a moment you’ll feel better. But sometimes that’s all you need
is a moment to get through the day.
It’s true, when you get a cold it seems so much worse. Not only that, but I’ve got to deal
with my divorce as well. Not fun. I don’t know if you’ve been through a divorce before.
I have. It’s like a death. Not an easy thing to do when you’re in this condition. Anyway,
live in the moment. Don’t dwell upon the past, and don’t think about the future. Just be
in the moment. That’s what I try to do.
It’s great to have family and friends remind you that you are getting better. They’re
either telling the truth or they’re really good at blowing smoke up my ass. I mean, come
on. What are you going to tell a guy in my condition he’s not getting better. Anyway, it
does help. Always think positive.
Therapy has been going good. I graduated from the light gate to the treadmill. That’s
a positive thing. They have me walking on my own with help (as much as possible).
When I do physical therapy and occupational therapy, I work on my hands and my arms.
She also helps me with my sight. By the end of those sessions I’m usually wiped out. I
have an ambulette van pick me up and bring me home. This is provided by the county.
You’ll learn that the county nurse is very helpful in getting you what you need. You’ll
have your primary insurance and you’ll want to try to apply for Medicaid if you’re
qualified. I don’t understand the whole insurance game, but it seems so complicated. I
can’t imagine doing it myself right now. At the moment, my mother has been doing her
best to get me what I need, wheelchairs, showers, aides, etc. One good thing my wife did
before she left for Texas was to get me on Medicaid. That has proven to help a lot.
I will never understand what happened as far as my relationship to her. I guess that’s
a whole other book. But I could tell you one thing, it doesn’t help being here alone. I
mean, I have my family and friends, but it’s really not the same as having your spouse by
your side. I would also have my child with me too. But I guess it’s just not to be. What
doesn’t kill you makes you stronger, right? Sometimes I wonder.
There have been small improvements. I can stand up better without help. I’m learning
how to feed myself and it’s becoming easier and easier. Just seems so slow. I guess,
after my first operation, I really excelled, that’s why the hospital gave me an award. It
just makes this recovery so much more difficult.
Some people say my speech is getting better. I feel it’s very difficult to talk. At least
things are changing.
Today was the first real warm day after the winter. I spent most of the day just sitting
outside in the fresh air. It felt so good. It’s what I’ve wanted to do for a long time. I
used to dream about these moments in the ICU after my operation. It would get me
through the hard times. So when you’re having a bad day, just picture yourself in a
beautiful spot and just for a moment you’ll feel better. But sometimes that’s all you need
is a moment to get through the day.
Tuesday, April 19, 2011
Chapter 7 - April 19, 2011
I’m talking to my friend Julie. She is typing for me. I’ve come down on my anti seizure
medicine. It’s allowed me to have more of a sense of clarity. That was powerful stuff.
It really numbed my sense of being. But with this clarity I also have fear, fear of how I
really am. I can’t really describe this feeling. The closest you can probably understand
is if you were in a sleeping bag, gaffer taped all around the bag, and dragged around by
your shoulders. It’s a very claustrophobic feeling. Sometimes I feel like I’m going to
lose my mind, as it has been like this for almost 2 years. Cheerful, huh?
Gotta remember to stay positive. A real positive thing happened last week. I got to see
my daughter. She came and stayed with me for a few days. Nothing better than getting
little hugs first thing in the morning. She is always so happy. We spent the day playing.
It really lifted my spirit. Now that she’s gone, I have to get back to work. It just makes
me realize that work hard and getting better is my job. With the Easter break they had
limited therapy at Helen Hayes so I end up doing a lot of work at home. I have a new
aide. He’s from India. And he has been helping me work out. It’s kind of like doing
homework. I spend every moment doing something that I believe will get me better. I
think I mentioned before but right about now I think it becomes a very mental game. I
know I can do all the physical therapy needed, but mentally I’m really tested right now.
It helps a lot to have family and friends around to encourage me. One day I’ll have
to have a big party and thank everyone. Anyway, not much more to report this week.
Oh, yeah, one thing: it seems that anything you catch like a cold etc., will be ten times
stronger. I think I got a cold from Sam. The weather has been so raw and cold.
I just realized now I’m on farting terms with my friend Julie. I had a sneezing attack but
farted because I have a broken body.
This week has been scary. I seem to be more aware of my body. God, I hope I don’t
stay like this forever. It’s kind of a nightmare. This week has been painful. Physically
painful. I opened up the front room in my parents old house on the Hudson River. After
this Spring and Summer. It’s kind of symbolic and like a rebirth an opening, a new thing.
I put my old pool table in there. That will help me with my balance. I’ll see you in a
couple weeks.
medicine. It’s allowed me to have more of a sense of clarity. That was powerful stuff.
It really numbed my sense of being. But with this clarity I also have fear, fear of how I
really am. I can’t really describe this feeling. The closest you can probably understand
is if you were in a sleeping bag, gaffer taped all around the bag, and dragged around by
your shoulders. It’s a very claustrophobic feeling. Sometimes I feel like I’m going to
lose my mind, as it has been like this for almost 2 years. Cheerful, huh?
Gotta remember to stay positive. A real positive thing happened last week. I got to see
my daughter. She came and stayed with me for a few days. Nothing better than getting
little hugs first thing in the morning. She is always so happy. We spent the day playing.
It really lifted my spirit. Now that she’s gone, I have to get back to work. It just makes
me realize that work hard and getting better is my job. With the Easter break they had
limited therapy at Helen Hayes so I end up doing a lot of work at home. I have a new
aide. He’s from India. And he has been helping me work out. It’s kind of like doing
homework. I spend every moment doing something that I believe will get me better. I
think I mentioned before but right about now I think it becomes a very mental game. I
know I can do all the physical therapy needed, but mentally I’m really tested right now.
It helps a lot to have family and friends around to encourage me. One day I’ll have
to have a big party and thank everyone. Anyway, not much more to report this week.
Oh, yeah, one thing: it seems that anything you catch like a cold etc., will be ten times
stronger. I think I got a cold from Sam. The weather has been so raw and cold.
I just realized now I’m on farting terms with my friend Julie. I had a sneezing attack but
farted because I have a broken body.
This week has been scary. I seem to be more aware of my body. God, I hope I don’t
stay like this forever. It’s kind of a nightmare. This week has been painful. Physically
painful. I opened up the front room in my parents old house on the Hudson River. After
this Spring and Summer. It’s kind of symbolic and like a rebirth an opening, a new thing.
I put my old pool table in there. That will help me with my balance. I’ll see you in a
couple weeks.
Monday, March 14, 2011
Chapter 6 - March 17, 2011
Well, happy anniversary to me! It's been about 6 months since my last major attack. 2 brain surgeries and about 7 other operations later - here I am! I'm still in recovery and probably will be for some time to come. I met with my neuro surgeon and a neurologist last week. All good. They saw my current MRI and gave me a good clean bill of health. No major surgeries needed. Once again they stress that I concentrate on getting better and doing my rehab. Rehab is so important.
I also met with a Buddhist priest. The priest told me how to meditate which has come in very handy. It calms me when I kind of freak out. He wasn't my iconic vision of a Buddhist priest. He looked more like a quarterback for an NFL team, retired or course. But he had some great advice and the meditations he taught me will be very valuable to me.
I've still been feeling very strange. They are tapering me off my medicines. They brought me down 250 ml for a month. I'm now on 1250 keppra and 250 of the depracote. There's been some shift. Not sure what it is. It might be because I'm changing my meds. At least things are changing. For the better, I'm sure.
Just a side note: Here's some more wise wisdom, don't ever ever give a dog 3 day old Chinese food, my dog's been dropping bombs on my legs like there's no tomorrow. I could probably open a methane plant. Now, back to my blog...
My eyes still move erratically and my balance is not good. I've been doing exercises as well as working on my balance. Usually I tell my aids and my therapists what is going on with me and they come up with the exercise to help me get better.
Now, after reading this again, I remember something the neurologist noticed. He said my eye movements, my facial tremors, my palate moving were all related. They looked at my MRI and he said, well look, look at what this guy is dealing with. I had major malformations on my brain stem. So there you have it. The neuro surgeon said it was a very rare condition and that I was special. I think I mentioned that before. I just wanted to remind everyone that I am special. ha ha ha.
I wish I could help out around the house more. I feel like such a burden to everyone. I guess I could do some dishes, but they might be spending more time replacing everything I break. I'm still having a hard time with my hands. Drawing has been a great benefit to me. I also have an art therapist come once a week. We work with clay. I'm thinking about starting guitar lessons. I guess I'll be starting over again.
I remember what the priest said. He said that it's very important to live in the moment. Not the past, not the future, but here and now. I've been finding that very difficult. As I miss my home, my daughter, my dog, my wife and my life on the beach. I'm still amazed that you could have everything you've ever wanted and lose it all in less than a second. It's amazing how fragile everything we love is.
I guess I just want to remind you all how lucky you are and how special everything is. I do miss surfing. It will really clear your head. No need to go off on a tangent like this. A good run in the rain would be nice or a good walk. For now, it will have to be my meditation.
I also met with a Buddhist priest. The priest told me how to meditate which has come in very handy. It calms me when I kind of freak out. He wasn't my iconic vision of a Buddhist priest. He looked more like a quarterback for an NFL team, retired or course. But he had some great advice and the meditations he taught me will be very valuable to me.
I've still been feeling very strange. They are tapering me off my medicines. They brought me down 250 ml for a month. I'm now on 1250 keppra and 250 of the depracote. There's been some shift. Not sure what it is. It might be because I'm changing my meds. At least things are changing. For the better, I'm sure.
Just a side note: Here's some more wise wisdom, don't ever ever give a dog 3 day old Chinese food, my dog's been dropping bombs on my legs like there's no tomorrow. I could probably open a methane plant. Now, back to my blog...
My eyes still move erratically and my balance is not good. I've been doing exercises as well as working on my balance. Usually I tell my aids and my therapists what is going on with me and they come up with the exercise to help me get better.
Now, after reading this again, I remember something the neurologist noticed. He said my eye movements, my facial tremors, my palate moving were all related. They looked at my MRI and he said, well look, look at what this guy is dealing with. I had major malformations on my brain stem. So there you have it. The neuro surgeon said it was a very rare condition and that I was special. I think I mentioned that before. I just wanted to remind everyone that I am special. ha ha ha.
I wish I could help out around the house more. I feel like such a burden to everyone. I guess I could do some dishes, but they might be spending more time replacing everything I break. I'm still having a hard time with my hands. Drawing has been a great benefit to me. I also have an art therapist come once a week. We work with clay. I'm thinking about starting guitar lessons. I guess I'll be starting over again.
I remember what the priest said. He said that it's very important to live in the moment. Not the past, not the future, but here and now. I've been finding that very difficult. As I miss my home, my daughter, my dog, my wife and my life on the beach. I'm still amazed that you could have everything you've ever wanted and lose it all in less than a second. It's amazing how fragile everything we love is.
I guess I just want to remind you all how lucky you are and how special everything is. I do miss surfing. It will really clear your head. No need to go off on a tangent like this. A good run in the rain would be nice or a good walk. For now, it will have to be my meditation.
Friday, March 4, 2011
Chapter 5 - March 4, 2011
I'm posting this blog, once again, for anybody out there who might have my same condition (traumatic brain injury). I'm talking to my friend, Julie, who's writing this for me because I can't type yet.
Last week was a difficult week. You know, when you have something like this, you have good days and bad days. I seem to have a bunch of bad days together. Last Monday, I went in to see my neuro-surgeon and the leading neurologists at New York Presbyterian. Before I saw them I had an MRI with contrast (I hate those things). I get so claustrophobic in the long narrow tube they put me in. Just thinking about it gives me claustrophobia. I have to stay still for a total of 20 minutes. I usually try to think about surfing, taking off on a big wave, the big drop. I would never imagine that rush would help me get through moments like that, but it does. So I went off on a bit of a tangent there. Anyway, after meeting with my neurosurgeon first, he was happy to say that the MRI was clean. No need for further surgery at the moment. That made me happy because the last MRI showed I needed to have surgery right away. They only knew that after doing an MRI. This meeting was my follow up to my surgery 6 months ago. My meeting with the neurosurgeon went well. He said to continue my therapy, that my injury was very rare. I'm so special - ha. Therapy is the number one reason I'll get better. I mentioned I was an athlete and I'm used to training so I'll do what they tell me to do. Therapy is so important. There was a moment that was rather humorous. My neurosurgeon, out of nowhere, asked me what I thought about God. I kind of panicked because I thought he was going to give me some bad news. But, the reason why he asked me, was because he's going to write a book on spirituality and recovery. He noticed I had a strong drive to survive, and he asked where it had come from. I think it's my desire to be with my daughter on the beach or maybe it came from my training as an athlete. I don't know. Either way, I would advise anyone in my condition to find that strength or rock to hold on to. You could call it religion or a family member or whatever. But, find something that will get you through all this, through the bad days. I know that some day, I will look back in my infinite wisdom gained from these moments, and think, "Boy that sucked."
I forgot to add this to my previous posting. I forgot to mention my situation for the past few days. I mentioned I had a series of bad days. Once again, I'm posting this message in case it helps someone out there.
It was weird, last week I woke up at about 2 in the morning every night in a panic. I didn't know where I was and I couldn't catch my breath. I guess you could call it an anxiety attack. Luckily my mother was sleeping nearby and heard me call for help. I was so disorientated. I couldn't move my arms or hands. I couldn't roll over. I was trapped in my own body. Would I ever get my body back?
I got the number of a Buddhist priest, a monk. He is going to help me with meditation to get me through moments like this. For the time, I just think about surfing or my daughter's beautiful smile.
Oh yeah, also, they are tapering me off the anti-seizure medicine starting tomorrow. That's great because the medicine has strong side effects. I believe it interferes with my therapy. I know I say it over and over, but you guys have no idea how lucky you are. It's a miracle just to drink a glass of water. If you think you're having a bad day, just look at the blog, or think about what I'm going through. I'll never complain about catering again.
Last week was a difficult week. You know, when you have something like this, you have good days and bad days. I seem to have a bunch of bad days together. Last Monday, I went in to see my neuro-surgeon and the leading neurologists at New York Presbyterian. Before I saw them I had an MRI with contrast (I hate those things). I get so claustrophobic in the long narrow tube they put me in. Just thinking about it gives me claustrophobia. I have to stay still for a total of 20 minutes. I usually try to think about surfing, taking off on a big wave, the big drop. I would never imagine that rush would help me get through moments like that, but it does. So I went off on a bit of a tangent there. Anyway, after meeting with my neurosurgeon first, he was happy to say that the MRI was clean. No need for further surgery at the moment. That made me happy because the last MRI showed I needed to have surgery right away. They only knew that after doing an MRI. This meeting was my follow up to my surgery 6 months ago. My meeting with the neurosurgeon went well. He said to continue my therapy, that my injury was very rare. I'm so special - ha. Therapy is the number one reason I'll get better. I mentioned I was an athlete and I'm used to training so I'll do what they tell me to do. Therapy is so important. There was a moment that was rather humorous. My neurosurgeon, out of nowhere, asked me what I thought about God. I kind of panicked because I thought he was going to give me some bad news. But, the reason why he asked me, was because he's going to write a book on spirituality and recovery. He noticed I had a strong drive to survive, and he asked where it had come from. I think it's my desire to be with my daughter on the beach or maybe it came from my training as an athlete. I don't know. Either way, I would advise anyone in my condition to find that strength or rock to hold on to. You could call it religion or a family member or whatever. But, find something that will get you through all this, through the bad days. I know that some day, I will look back in my infinite wisdom gained from these moments, and think, "Boy that sucked."
I forgot to add this to my previous posting. I forgot to mention my situation for the past few days. I mentioned I had a series of bad days. Once again, I'm posting this message in case it helps someone out there.
It was weird, last week I woke up at about 2 in the morning every night in a panic. I didn't know where I was and I couldn't catch my breath. I guess you could call it an anxiety attack. Luckily my mother was sleeping nearby and heard me call for help. I was so disorientated. I couldn't move my arms or hands. I couldn't roll over. I was trapped in my own body. Would I ever get my body back?
I got the number of a Buddhist priest, a monk. He is going to help me with meditation to get me through moments like this. For the time, I just think about surfing or my daughter's beautiful smile.
Oh yeah, also, they are tapering me off the anti-seizure medicine starting tomorrow. That's great because the medicine has strong side effects. I believe it interferes with my therapy. I know I say it over and over, but you guys have no idea how lucky you are. It's a miracle just to drink a glass of water. If you think you're having a bad day, just look at the blog, or think about what I'm going through. I'll never complain about catering again.
Saturday, February 26, 2011
Chapter 4 - February 26, 2011
Today I feel about 6 out of 10. Today my aid came and I did some home therapy. I rode the bike and did some arm exercises so I can try to feed myself one day. My eyes still move erratically and my vision is double. Just imagine going down a bumpy road and looking through binoculars. Double vision. That's my life at the moment. It's been that way for a year and a half now. The only rest I get is when I close my eyes. Other than that, everything's great - ha.
The weekends I don't go to Helen Hayes for therapy but I do a lot of home therapy with my aids. My friend Julie came over to help me post this blog. And to all my other friends out there, thank you for your support.
The weekends I don't go to Helen Hayes for therapy but I do a lot of home therapy with my aids. My friend Julie came over to help me post this blog. And to all my other friends out there, thank you for your support.
Friday, February 18, 2011
Chapter 3 - February 18, 2011
When I got to Helen Hayes, the rehabilitation hospital, they slotted me as traumatic brain injury. There was an entire wing for TBI patients. The cool thing was it was kind of like surfing, you might recognize people, but you never knew what they did before they got hurt. I had breakfast with a judge, and FBI agent, a banker, and a housewife, a black panther, a drug addict. We all had one thing in common. We were pretty fucked up. Heh. The other thing we all had in common, I don't care who they were, but everyone cried. It's important to try and stay positive. To think of one thing a day to stay positive, no matter how small. Make it your mantra for the day.
Another way to stay happy for me was to see my friends and relatives. I miss coming home and seeing my daughter. Those small simple things will get you through hell. Become good friends with your social director, the person in charge of your case file. They will help you with your case.
There are several levels of rehab. There's acute, which is right after intensive care. And then there's sub-acute which is sort of like a glorified nursing home. As far as I could see, they offered little re-hab for TBI patients. I was lucky enough to be able to move in with my parents. I would suggest moving in with your family over a sub-acute unit. Some people might not be that lucky.
Rehabilitation is so important. The minute they show up in your face, take advantage and do what they say. My rehab started the minute I woke up in intensive care. They got to work right after my operation. Just listen to what they say and do what they say to do. It's well worth it. You have to remember, each person and each case is different and unique. You have to treat each individual as his own entity. No one is the same. No outcome is the same. The doctors don't even know your outcome. They can just make their best educated guess. Therefore, the future lies in your own hands.
Have a destination, or a place you want to end up. How you want to be is up to you. Visualize how you are going to be. Make up your own destiny. I don't want to sound too funky, but it's my opinion after seeing people come and go. If you give up, there's no hope.
I saw people just give up, and you may as well just have put them in the trash. Never give up.
Friday, January 28, 2011
Chapter 2 - January 28, 2011
1/28/11
I’m finally out of the hospital. Turned 50 and living at my parents. I think I’ll have to go see a shrink for that. My wife is in Texas with our daughter and is suing me for divorce, so I’m on my own. Starting over. Just learned today that I need to set up a trust fund in case I get any money. I don’t want to jeopardize my Medicaid. They have very strict rules that I must go by. I just made one for food and clothing and to look after Sam, my daughter, when she comes to visit. My therapy and operation have been covered by my primary medical insurer and Medicaid. Thank God, as I have no money.
I got a new puppy for my birthday, which was last week. I still miss my dog Buster, but it is nice to have a puppy around. His name is JoJo and he’s pretty cute.
This weekend I’m looking forward to taking more photographs. It has been snowing here a lot for many days. It’s a Winter Wonderland. I remember I recently met with a famous artist named Chuck Close. He is living in a world similar to mine. He had some really good advice. Do what gives you pleasure in life. Have a good shrink, which I do. Work on your independence as much as you can. Concentrate on your passion. In my case, that is photography. Never give up.
Last night I kind of had a bit of a panic attack. I was worried about what will happen to me. I really miss my daughter. It’s hard being sick like this. I feel trapped in my own body. It’s very claustrophobic. I’m alert and sharp as I always have been but I can’t speak well or move my hands or anything. Can’t even roll over. No privacy ever. Nor can I do that thing which I’d like to do. Even turn on the TV. I just lay in the dark and remember what my doctor always said, “Be patient.” So I wait. It’s bad enough being sick, but worrying about a divorce on top of it makes things even more scary and difficult. I have to find the energy to do both. I have a good Texas lawyer and delegate as much work to her as I don’t have the energy to get well and deal with a divorce.
A friend of mine, Fran Drescher is going to be on Oprah today. I’m looking forward to seeing her interviewed. Fran has been very supportive and understanding of my illness. I guess it’s because she went through some tough times herself. She understands. It will be good to see her being interviewed. Needless to say, I think she is wonderful.
Every day I do a bit of therapy. It’s kind of like homework. It is needed. I do exercises that are given to me by my speech PT and OT. Physical therapist and occupational therapist. It’s a bit painful, but I feel like I’m in training. As long as I remember the more work I do, the faster I’ll get better, the faster I’ll get through it. Even the smallest amount helps.
Speaking of help… Your donations, if you choose to donate, will help me with food, transportation, clothing, and therapy. All this is not covered by insurance. I never asked for help before. As a matter of fact, just before I got sick, I did a book called “Rescue Tails.” I donated all my proceeds, 100%, from the sale of the book to charity. I stuck to my word and am still giving them all the money, even though I now need it myself. I should do a book called “Rescue Brian.” I guess your donations will validate this fact. Thank you again for your support.
One thing I learned through this whole ordeal is to stay positive. Like a business plan, have a vision of the future. Have a goal to reach. Wallowing in self-pity will get you nowhere. It’s o.k. to feel bad. It’s natural. But there’s a time for everything. You’re sad for a while, but then you cast that aside and move forward.
I’m finally out of the hospital. Turned 50 and living at my parents. I think I’ll have to go see a shrink for that. My wife is in Texas with our daughter and is suing me for divorce, so I’m on my own. Starting over. Just learned today that I need to set up a trust fund in case I get any money. I don’t want to jeopardize my Medicaid. They have very strict rules that I must go by. I just made one for food and clothing and to look after Sam, my daughter, when she comes to visit. My therapy and operation have been covered by my primary medical insurer and Medicaid. Thank God, as I have no money.
I got a new puppy for my birthday, which was last week. I still miss my dog Buster, but it is nice to have a puppy around. His name is JoJo and he’s pretty cute.
This weekend I’m looking forward to taking more photographs. It has been snowing here a lot for many days. It’s a Winter Wonderland. I remember I recently met with a famous artist named Chuck Close. He is living in a world similar to mine. He had some really good advice. Do what gives you pleasure in life. Have a good shrink, which I do. Work on your independence as much as you can. Concentrate on your passion. In my case, that is photography. Never give up.
Last night I kind of had a bit of a panic attack. I was worried about what will happen to me. I really miss my daughter. It’s hard being sick like this. I feel trapped in my own body. It’s very claustrophobic. I’m alert and sharp as I always have been but I can’t speak well or move my hands or anything. Can’t even roll over. No privacy ever. Nor can I do that thing which I’d like to do. Even turn on the TV. I just lay in the dark and remember what my doctor always said, “Be patient.” So I wait. It’s bad enough being sick, but worrying about a divorce on top of it makes things even more scary and difficult. I have to find the energy to do both. I have a good Texas lawyer and delegate as much work to her as I don’t have the energy to get well and deal with a divorce.
A friend of mine, Fran Drescher is going to be on Oprah today. I’m looking forward to seeing her interviewed. Fran has been very supportive and understanding of my illness. I guess it’s because she went through some tough times herself. She understands. It will be good to see her being interviewed. Needless to say, I think she is wonderful.
Every day I do a bit of therapy. It’s kind of like homework. It is needed. I do exercises that are given to me by my speech PT and OT. Physical therapist and occupational therapist. It’s a bit painful, but I feel like I’m in training. As long as I remember the more work I do, the faster I’ll get better, the faster I’ll get through it. Even the smallest amount helps.
Speaking of help… Your donations, if you choose to donate, will help me with food, transportation, clothing, and therapy. All this is not covered by insurance. I never asked for help before. As a matter of fact, just before I got sick, I did a book called “Rescue Tails.” I donated all my proceeds, 100%, from the sale of the book to charity. I stuck to my word and am still giving them all the money, even though I now need it myself. I should do a book called “Rescue Brian.” I guess your donations will validate this fact. Thank you again for your support.
One thing I learned through this whole ordeal is to stay positive. Like a business plan, have a vision of the future. Have a goal to reach. Wallowing in self-pity will get you nowhere. It’s o.k. to feel bad. It’s natural. But there’s a time for everything. You’re sad for a while, but then you cast that aside and move forward.
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