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.

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!

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.