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.

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.