Sunday, July 31, 2011

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

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.

Tuesday, July 19, 2011

Chapter 16 - July 19, 2011

We are in the middle of a heat wave. I have to share something funny I heard the other
day, from actor Zach Brath: There was a really hot girl standing on the street s of New
York. She said, as she wiped the sweat from her brow, “Lord, if hell is hotter than this,
I’m going to have to change my ways.” Ha ha ha. That’s how hot it is here.

I stay inside near an air conditioning unit. It seems the heat and humidity really get to
me. I guess the brain stem regulates body temperature. Remember, mine is damaged
from the traumatic brain injury. Anyway, that’s boring. The joke I thought was funny

My friend Julie came over with her two boys. They went for a swim with my daughter,
Sam. I wish I could go swimming. It’ll happen. It’ll have to be next year. I have to be

I’m such a big baby. I’ve been falling out of bed for the past few nights. I’ve been
having my mom stay near my room to help me if I need help. I still wake up at night in a
panic sometimes. Or I fall out of bed sometimes. When will this all end? It’s such a big

My shrink came by today and she noticed a difference from the last week. She said I
looked and sounded better. That’s always encouraging. I don’t think she’d lie. Why
would you lie to a guy in a wheelchair? Anyway, it’s good news for me to hear that.

My daughter has been running around the house. She is really enjoying herself, and it
makes me happy to see her. I remember she will be leaving soon. It’s such a drag.

I have been going to therapy when my daughter goes to camp. They have been working
on my walking. It’ll feel so good to walk. As I was walking down one hall I realized that
this walking is like running a race. Each step you take is an effort, and well thought out.
I’m always exhausted at the end of each session. It’s exhausting, but so important. You’ll
come to welcome therapy and dred it at the same time. It’s a lot of work, hard work. But
I’m willing and ready to train to get better. I’ll never give up until they throw dirt on my

On a positive note, I got a pdf file from my friend who I’m doing a book with. It looks
great. Her words and my photographs. It’s more of a spiritual book, self help book. My
next book will be based on this blog. I’ll keep you posted.

See you next time.

Friday, July 15, 2011

Chapter 15 – July 15, 2011

Sam came back to visit me for 2 whole weeks. Yay! It’s been great having her here. My
Mom & I talked about activities for her. It’s been a lot of work but we seem to have a
good list of things for her to do with me. I try to get involved as best I can. Considering
my condition. I do a lot of watching right now. But it’s great to see her play. She sucks
the life out of me though. I have a full time baby sitter. That helps a lot. And I have my
aids help me. That helps a lot.

While Sam was away at camp, I went to my therapy, and they kicked my butt today. It’s
hard work. Any car or van movement seems to really affect me. It’s not car sickness,
but it’s like being totally out of it. Really tired and lethargic. It’s also been very hot and
humid out. That seems to affect me as well. Stay cool.

It’s great to be home and not at a rehab hospital. But, it’s also very difficult. Imagine,
I’m 50, living at home. I have no one to talk to but the dog. And the dog talking back.
Just kidding. It is tough to see your parents getting old. I think I need to go to therapy
just for that. Anyway, they’re doing a great job looking after me. It must be tough on
them. I think I mentioned going to therapy today, they tested me again and noticed
improvement. So, yes. I am getting better, but it’s a long journey. Your victories are
very small, but they do happen.

I want to thank my friend Julie, again, for typing this for me. That’s the profound
thought of the day.

I met with some filmmakers the other day. They do documentaries. I think this journey
would make a good documentary. They seem interested. I meet with them again soon.
If it helps one person, it’s worth it. Remember, I said it before, I’ll say it again, there’s
going to be a lot of boys and girls coming back from the wars with similar injuries.
Traumatic brain injury. This may be a tool, a way of maybe looking at the future. Not
exactly a crystal ball because everyone’s different, but it will give everyone an idea of
what to expect.

I’m going to go back to watching Sam swim in my sister’s pool. She gets along great
with my sisters kids. It’s fun to watch them play but it’s a little bittersweet. I would love
to go swimming and play with them, but yet here I sit. What a drag.

I do want to mention something. It seems right about now, things get to you mentally.
Mind you, my eyes have been jumping up and down for two years now. It’s making me
a little loopy. Only break I seem to get is when I close my eyes. I wear dark sunglasses
at the moment, so people don’t know my eyes are closed. This was what my therapist
recommended. I feel like I could go surfing again. It’s nice to wear sunglasses. It makes
me feel normal. It does look a little strange when you’re out at night. But who said I
wasn’t strange.

O.K. I’ll talk to you later.

P.S. My cousin did have a baby girl! It was a full moon, and her name is Luna. She was
born on Bastille Day. How cool is that.

Tuesday, July 5, 2011

Chapter 14 - July 5, 2011

My daughter left for Texas the other day. It was great to have her here. It reminds me
that what is really important is kindness and compassion. You see, it’s really almost like
being reborn again. You’re like a baby. You’re natural reaction to a baby is kindness
and compassion. I guess that’s what it all comes down to when you’re sick like this.
Anyway, Sam gives a lot of kindness and compassion and it made me realize that’s all
you really need. That’s my profound thought of the day.

This week was the 4th of July weekend, and friends encouraged me to go out. It’s good
to break up the routine of therapy and healing. I went out to listen to music. I thought
the noise would really bother me as it has in the past, but I found I could deal with it. It
was good. It was great to go out, though it made me real tired. Every little move was
like running a marathon, which brings me to a thought: When you go home after being in
the hospital so long, be very careful. You will get so tired. I guess you call it “stimulus
overload.” I find it to be very tiring. I’m still not used to it yet, and it’s been 8 or 9
months since I came home. Going through this stupid divorce doesn’t help. It’s a fact
that my wife is suing me for divorce, but I’m not supposed to talk about that so you could
draw your own conclusions.

Oh yeah! Anyone know how to make a Voodoo Doll? Just kidding. I don’t think one is
needed. Remember, live by the sword, die by the sword. And if you don’t have anything
nice to say, don’t say anything at all. I’ll leave it at that. I put away my soapbox.

I will say one thing though, you’ll find, I think I mentioned this before, you will find
people react differently to your illness. You’ll discover who your true friends are and
who is really a good person. Remember, kindness and compassion.

I would like to share a story with you. While I was in therapy, my mother brought Sam
upstairs to see a fellow friend on the 2nd floor. When Sam arrived on the 2nd floor, she
saw balloons at the nurses’ station. She asked, “What are those balloons for?” and the
nurse replied, “Oh, it’s a patient’s birthday.” Sam said can I see the patient? The nurse
replied, “You’ll have to ask her family if it’s o.k.” Sam said, “Where are they?” She got
permission, went into the room and saw the patient. Imagine Jaba the Hut lying in bed
with tubes coming out of her. But Sam had no fear. She belted out, “Happy Birthday”
song to the mean woman, the patient. When Sam was done, she left the room with the
patient smiling ear to ear. Remember, kindness and compassion. She has a good heart.
Anyway, I just wanted to share that with you.

The county nurse has provided a shrink to come and see me. It’s really important to
unload your fears and questions. I don’t know how you go about doing it, but she seems
to help. Hey, whatever gets you by. Could be friends, family, or professional.

The other day, I was in therapy, my occupational therapist noticed a bite on my arm.
It was a tick bite with a bullseye. I probably got it from the dog. They put me on an
antibiotic because I seemed weak and had a fever and had been throwing up. So after

speaking to my neurologist, I started taking antibiotics. But they’re kicking my butt. I’m
tired all the time and I feel stiff all over. It’s hard to even lift up my arms. Brings out
claustrophobia in a big way, and makes it very difficult to talk. I always remember what
my neurologist said. He said, anything you catch, you’ll feel a hundred times over. I
must have lyme disease, or at least I can really feel the effect of the antibiotics.

If it’s not one thing, it’s another. I can’t seem to catch a break. Talk about being up
against the ropes. Oh man. I can’t even watch TV. My eyes are still jumping. It seems
the only break I get is when I sleep. It’s kind of cool. I look forward to being in my
dreams of running or surfing or playing with my daughter. So when I wake up, I always
look forward to being normal, but I’m greeted with the same old bullshit over and over. I
can’t walk, I can’t see. No one understands me. I can’t talk properly. Back to training.

This might sound corny, if you’re healthy, thank God, or whatever you believe in that
you’re normal. I mean, the fact that you can stand up and go get a glass of water and
drink it, is a miracle. Be thankful for what you’ve got. They took away my damn
driver’s license. Can you believe it. That would be interesting to see me drive. Ha. Be
thankful you can drive. I could drive, but I’m sure I’d take out a few trees. Ha.

Anyway, I’ll talk to you guys later. B. Nice.

P.S. I just wanted to give a shout out to my cousin and his wife. They’re about to have
a baby. I’m really proud of them. They helped me get through some really tough times.
Now they’ll be rewarded with a beautiful baby. Good job you guys. Well done.