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.

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

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.

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

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