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
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