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.

Chapter 4 - February 26, 2011

Today I feel about 6 out of 10.  Today my aid came and I did some home therapy.  I rode the bike and did some arm exercises so I can try to feed myself one day.  My eyes still move erratically and my vision is double.  Just imagine going down a bumpy road and looking through binoculars.  Double vision.  That's my life at the moment.  It's been that way for a year and a half now.  The only rest I get is when I close my eyes.  Other than that, everything's great - ha.

The weekends I don't go to Helen Hayes for therapy but I do a lot of home therapy with my aids.  My friend Julie came over to help me post this blog.  And to all my other friends out there, thank you for your support.

Chapter 3 - February 18, 2011

When I got to Helen Hayes, the rehabilitation hospital, they slotted me as traumatic brain injury. There was an entire wing for TBI patients. The cool thing was it was kind of like surfing, you might recognize people, but you never knew what they did before they got hurt. I had breakfast with a judge, and FBI agent, a banker, and a housewife, a black panther, a drug addict. We all had one thing in common. We were pretty fucked up. Heh. The other thing we all had in common, I don't care who they were, but everyone cried. It's important to try and stay positive. To think of one thing a day to stay positive, no matter how small. Make it your mantra for the day.

Another way to stay happy for me was to see my friends and relatives. I miss coming home and seeing my daughter. Those small simple things will get you through hell. Become good friends with your social director, the person in charge of your case file. They will help you with your case.

There are several levels of rehab. There's acute, which is right after intensive care. And then there's sub-acute which is sort of like a glorified nursing home. As far as I could see, they offered little re-hab for TBI patients. I was lucky enough to be able to move in with my parents. I would suggest moving in with your family over a sub-acute unit. Some people might not be that lucky.

Rehabilitation is so important. The minute they show up in your face, take advantage and do what they say. My rehab started the minute I woke up in intensive care. They got to work right after my operation. Just listen to what they say and do what they say to do. It's well worth it. You have to remember, each person and each case is different and unique. You have to treat each individual as his own entity. No one is the same. No outcome is the same. The doctors don't even know your outcome. They can just make their best educated guess. Therefore, the future lies in your own hands.

Have a destination, or a place you want to end up. How you want to be is up to you. Visualize how you are going to be. Make up your own destiny. I don't want to sound too funky, but it's my opinion after seeing people come and go. If you give up, there's no hope.

I saw people just give up, and you may as well just have put them in the trash. Never give up.