Chapter 10 - May 31, 2011

My friend Julie, who’s writing this, noticed some improvement. Like I’m more
expressive with my hands. Other friends say my speech is clearer. There are definite
improvements, but on the other hand, I had a week from hell, ha ha. I think I’m at that
angry stage. I imagine you go through different emotions. Right now I’m pissed off.

I always remember my doctor saying, “Have patience.” How do you keep biting your
tongue and not being able to move or walk, etc., etc. Oh, I had an epiphany! I just
remembered something. I was sitting on the porch as I do in the hours of the day, looking
at a tree, thinking, life is like water. You have an idea where it’s going, but you never are
sure where it will end up. That’s my profound statement of the day, that day.

I did have and I’m still having a rough week. I think I’m more aware of my body. I’m
waking up I guess. I remember in therapy as I was walking I was thinking, damn, I’ve
come a long way, and then I remembered, I still have a long way to go, and a lot of hard
work to do. I think I’m tired. I need a vacation. But you can’t run away from yourself. I
guess that’s profound. That’s number two.

My friend invited me to Paris. He has openings in some hotel in Paris. I’d love to go,
but I can’t fly anywhere. I’m thinking of taking a boat one day, a steam ship. This week
I was going to keep myself occupied so we transformed the front room into my living
space. It gives me a sense of privacy and I can still go on to the deck. I’m trying to turn
this great house into a location. Make the house work for my parents for a change. It’s a
great location. I’ve worked here many times before. A commercial place down the road
also offered their grounds as a location. So I’ll combine the two.

I think, to make a living these days, you have to almost have two businesses. I have
photography, but I’m thinking of also starting another one with a friend of mine that I
grew up with. I can’t tell you what it is, but I think it’s a good idea. It’s fun to start a
new enterprise. Hey, I’ve got nothing but time to think of new ideas.

I guess that’s it for this blog. We’ll be in touch next week. Remember, stay positive.
See you later. Bye.

Chapter 9 - May 2, 2011

She’s only 4 and a half. She said to me, Daddy, your speech is much better.
Wait, she said, your talking is much better. I had her come to therapy and had her stick
around when I walked with the therapist. I thought it was important that she see I’m
getting better.

All the pain and suffering goes away when you hear those simple words, “Yay! Yay
Daddy!” That was when I was walking last week. That was 8 months after my second
operation. And it’s been great having her here. She’s a handful though. 4 and a half.
I think if we could harness her energy, you could run your city for one day. Man, that
kid’s got some energy. It’s tough though because all that energy makes me so tired.
Thank God my family and friends are here to play with her and take care of her.

I’ve been pushing to do water therapy in the pool but my main therapist wants me to
wait a little longer. They want me to do more weight bearing exercises. It’s frustrating
cause I’m really antsy to get in the water. It helped me so much after the first operation.
I’m going to talk to them again this week. Being in the water helps one’s balance and
coordination. And really helps your overall therapy, I believe.

Speaking of overall therapy, the woman, Barbara, who is in charge of all the wheelchairs
is amazing. It really is an art form I never knew about, and it’s rare that you can get
a customized chair to your needs. Most chairs you can get are for generic cookie

cutter chairs. There’s a big difference. I never knew it but you can tell. Anyway, the
wheelchair place has been very helpful. You see, as you get better you will receive tools
like a wheelchair or a walker or a lift to assist you in getting better. When you’re done
with them, you just move on to the next thing. I remember sitting in a wheelchair for the
first time. I felt so restricted and confined. When actually it will give you more freedom
to move about and it will keep you safe. Remember that in many cases it’s just a step in
the long journey of healing. Don’t get hung up on the tools.

I think I’ll go play with my daughter now. I’ll see you all later.

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.

Chapter 6 - March 17, 2011

Well, happy anniversary to me!  It's been about 6 months since my last major attack.  2 brain surgeries and about 7 other operations later - here I am!  I'm still in recovery and probably will be for some time to come.  I met with my neuro surgeon and a neurologist last week.  All good.  They saw my current MRI and gave me a good clean bill of health.  No major surgeries needed.  Once again they stress that I concentrate on getting better and doing my rehab.  Rehab is so important.

I also met with a Buddhist priest.  The priest told me how to meditate which has come in very handy.  It calms me when I kind of freak out.  He wasn't my iconic vision of a Buddhist priest.  He looked more like a quarterback for an NFL team, retired or course.  But he had some great advice and the meditations he taught me will be very valuable to me.

I've still been feeling very strange.  They are tapering me off my medicines.  They brought me down 250 ml for a month.  I'm now on 1250 keppra and 250 of the depracote.  There's been some shift.  Not sure what it is.  It might be because I'm changing my meds.  At least things are changing.  For the better, I'm sure.

Just a side note:  Here's some more wise wisdom, don't ever ever give a dog 3 day old Chinese food, my dog's been dropping bombs on my legs like there's no tomorrow.  I could probably open a methane plant.  Now, back to my blog...

My eyes still move erratically and my balance is not good.  I've been doing exercises as well as working on my balance.  Usually I tell my aids and my therapists what is going on with me and they come up with the exercise to help me get better.

Now, after reading this again, I remember something the neurologist noticed.  He said my eye movements, my facial tremors, my palate moving were all related.  They looked at my MRI and he said, well look, look at what this guy is dealing with.  I had major malformations on my brain stem.  So there you have it.  The neuro surgeon said it was a very rare condition and that I was special.  I think I mentioned that before.  I just wanted to remind everyone that I am special.  ha ha ha.

I wish I could help out around the house more.  I feel like such a burden to everyone.  I guess I could do some dishes, but they might be spending more time replacing everything I break.  I'm still having a hard time with my hands.  Drawing has been a great benefit to me.  I also have an art therapist come once a week.  We work with clay.  I'm thinking about starting guitar lessons.  I guess I'll be starting over again.

I remember what the priest said.  He said that it's very important to live in the moment.  Not the past, not the future, but here and now.  I've been finding that very difficult.  As I miss my home, my daughter, my dog, my wife and my life on the beach.  I'm still amazed that you could have everything you've ever wanted and lose it all in less than a second.  It's amazing how fragile everything we love is.

I guess I just want to remind you all how lucky you are and how special everything is.  I do miss surfing.  It will really clear your head.  No need to go off on a tangent like this.  A good run in the rain would be nice or a good walk.  For now, it will have to be my meditation.