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
Tuesday, November 29, 2011
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
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