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.

Chapter 5 - March 4, 2011

I'm posting this blog, once again, for anybody out there who might have my same condition (traumatic brain injury).  I'm talking to my friend, Julie, who's writing this for me because I can't type yet.

Last week was a difficult week.  You know, when you have something like this, you have good days and bad days.  I seem to have a bunch of bad days together.  Last Monday, I went in to see my neuro-surgeon and the leading neurologists at New York Presbyterian.  Before I saw them I had an MRI with contrast (I hate those things).  I get so claustrophobic in the long narrow tube they put me in.  Just thinking about it gives me claustrophobia.  I have to stay still for a total of 20 minutes.  I usually try to think about surfing, taking off on a big wave, the big drop.  I would never imagine that rush would help me get through moments like that, but it does.  So I went off on a bit of a tangent there.  Anyway, after meeting with my neurosurgeon first, he was happy to say that the MRI was clean.  No need for further surgery at the moment.  That made me happy because the last MRI showed I needed to have surgery right away.  They only knew that after doing an MRI.  This meeting was my follow up to my surgery 6 months ago.  My meeting with the neurosurgeon went well.  He said to continue my therapy, that my injury was very rare.  I'm so special - ha.  Therapy is the number one reason I'll get better.  I mentioned I was an athlete and I'm used to training so I'll do what they tell me to do.  Therapy is so important.  There was a moment that was rather humorous.  My neurosurgeon, out of nowhere, asked me what I thought about God.  I kind of panicked because I thought he was going to give me some bad news.  But, the reason why he asked me, was because he's going to write a book on spirituality and recovery.  He noticed I had a strong drive to survive, and he asked where it had come from.  I think it's my desire to be with my daughter on the beach or maybe it came from my training as an athlete.  I don't know.  Either way, I would advise anyone in my condition to find that strength or rock to hold on to.  You could call it religion or a family member or whatever.  But, find something that will get you through all this, through the bad days.  I know that some day, I will look back in my infinite wisdom gained from these moments, and think, "Boy that sucked."

I forgot to add this to my previous posting.  I forgot to mention my situation for the past few days.  I mentioned I had a series of bad days.  Once again, I'm posting this message in case it helps someone out there.

It was weird, last week I woke up at about 2 in the morning every night in a panic.  I didn't know where I was and I couldn't catch my breath.  I guess you could call it an anxiety attack.  Luckily my mother was sleeping nearby and heard me call for help.  I was so disorientated.  I couldn't move my arms or hands.  I couldn't roll over.  I was trapped in my own body.  Would I ever get my body back?

I got the number of a Buddhist priest, a monk.  He is going to help me with meditation to get me through moments like this.  For the time, I just think about surfing or my daughter's beautiful smile.

Oh yeah, also, they are tapering me off the anti-seizure medicine starting tomorrow.  That's great because the medicine has strong side effects.  I believe it interferes with my therapy.  I know I say it over and over, but you guys have no idea how lucky you are.  It's a miracle just to drink a glass of water.  If you think you're having a bad day, just look at the blog, or think about what I'm going through.  I'll never complain about catering again.