Chapter 33 - January 17, 2012

Hi everyone.  Well, I said this before, but I’ll say it again.  I really believe my whole life has gotten me ready for this moment in my life. You see, I had a very full and interesting life. My parents took me out of school.  I traveled around the world.  I lived in Australia, Paris, New York City.  I built my dream house upon the cliff of Montauk in front of where I surfed.  I ran across America. I held several track records. I’ve survived plane accidents, car accidents.  I was hunted by warriors in New Guinea.  I was married twice. I got divorced twice. That was worse than the warriors, heh. I was a fashion photographer, traveled the world, met some really interesting people, etc., etc.  I could go on and on.  The point is, this all got me ready for here and now.  This is the toughest thing I’ve ever had to go through, and I think I’ve made it so far because of how I grew up. Anyway, that’s my thought for the week.  My profound thought.

So to give you an update:  I had some auras that are a warning to a seizure, so they increased my seizure medicine.  It’s just a slight adjustment, but anytime you change your medication, you feel it.  I’m also on antibiotics because of a bad cold I got.  All this new medicine makes me feel weird, not to mention the cold.  It’s been another tough week, but what are you gonna do. Huh? Just suck it up and keep going forward.  Remember, one day at a time.

I’ve been thinking, you see, you tend to do a lot of thinking when you sit around on the porch or by the fire.  I’ve been thinking that it’s really important to look after each other.  Right now, my parents look after me.  It’s important because one day will come when they will need someone to look after them.  You have to take care of each other.  Very important.  Then, the other thing I thought was, I think they should have nothing but good news on TV.  I’m just so sick of watching bad news.  Can you imagine, if we turn on the TV and see puppies and kittens, backlit in a field of clover and flowers, nice music.  You get the idea. Good news. I remember, I was photographing a very famous news anchor and he seemed really sad as he looked at his laptop.  I said, what’s wrong, you seem so sad.  He said, Oh, it’s a bad day for news.”  And I was like, what do you mean.  What happened?  And he said, “Nothing happened.  That’s the point.  Nothing bad happened.”  What a drag to think like that all the time.  So negative.  So remember, stay positive.

Oh, I just saw the space where I’m due to have a photographic show.  It’s a nice gallery.  Good light.  I’m really looking forward to putting the show together.  It’s really important to have something to look forward to.  It keeps your mind occupied. Something to think about, other than therapy. The other good news was my friend who’s an electrical engineer came by.  We picked out a hybrid car to buy and a trailer.  He’ll come with me on the trip across America.  I’m trying to get a grant to fund the whole project.  It would be good advertising for someone.  Anyone out there know somebody?  Just a thought.  Hey you never know. Just had to ask. I’m going to do it either way.

One thing I’d like to say is that Music has been so important for me.  When I have some down time, I listen to my music.  I’ve been lucky enough to keep my hearing.  I got really depressed the other day because there’s still a lot of things I can’t do and I was really sad, but my mom reminded me when you’re sad, think about the things you can do, and I thought that’s a really good idea.  You see, I can reason, I can think, I can move my hands, my feet, I’m getting better.  I can now feed myself.  It continues to get better and when I started thinking about the small things I can do, like swallow liquid, very simple things, but I get really happy.  So don’t think about things you can’t do.  Think about the things you can do and it’ll make you happy.  I never realized how lucky I was.  I did some amazing things like windsurfing in Hawaii in the open ocean.  Nothing like it.  Total freedom.  I’ll be back there one day.

See you guys next week.  B. Nice

Chapter 32 – January 3, 2012

Happy New Year everybody! It’s a new year and I’m going to think positive and self
image a good year. Anyway, check this out. Imagine me, lying in bed trying to pee in
a bottle. Imagine me trying to keep my dog away. Imagine me with the worst cold you
can imagine. Basically, I’m a mess right now. Now imagine this, imagine my ex calling
to speak with my little one. My ex happens to be in the Caribbean having champagne,
taking in the sun with my ex’s new love interest. Who said life is fair? Anyway, you
gotta have a laugh. Talk about extremes.

The past few weeks have been kind of tough. They changed up my therapy, and I
got a wicked cold. You see, any time I get a cold or flu or anything like that, I feel it
tenfold more because of my condition. Basically, I feel like hell, and then, my little one
arrived to see me. And my little one is sick as well. Man, I can’t catch a break. I need a
vacation. I would always complain about it before, but I miss my work trips. We used to
work in places like Hawaii, St. Barts, etc. Not a bad way to make a living.

I’m going to go off on a tangent here. Are you a climber? Do you climb faces? Cliffs?
Breathing is so important. Don’t panic. You see, right now, my friend who’s typing
this is seeing my diaphragm panicking and going crazy. It’s hard to breathe. It’s hard
to relax. I keep coughing. Can’t stop. My diaphragm is spassing out. It’s a very
uncomfortable feeling. You have no control. The only real way to relax is to meditate. I
feel like the past three years I have been doing meditation. They’re quick ones, but they
get me through what I have to get through. Surfing has always helped me. You see, in
surfing, you live in the moment. You have to to make the ride.

It seems my coughing has calmed down, so I’ll continue. I’ll talk about therapy
again. I mentioned before, in my last blog, they discontinued my physical therapy and
occupational therapy. I didn’t know what to do. My mom looked around for me and
there was nothing as good as what I got. I made a decision to join the wellness center at
my hospital and I will continue with my swim program. They know me at my hospital.
So it’s good to stay where they know me. They also have a rapid response team if you
get real sick, so you’re taken care of right away. The other places I looked at, they might
find you a week later. I’ll continue on my own and I’ll get better and go back to my
physical and occupational therapy.

Oh, I forgot to tell everyone, I’m going to get a car, a trailer and an assistant, and go
across America, taking photographs. It will be a continuation of what I’m working
on now. I photograph the world as I see it. It’s pretty funky. It’ll be a great project.
And hopefully, I’ll have a show when I’m done. Who knows, it might even turn into
something big. I’ve got some ideas. You tend to get good ideas when you’re lying on
your back and thinking for three years.

I’d like to remind everyone what’s really important in my life, at least what I’ve found
to be important. I guess you could say, this is my profound thought of the week. When
you see family, it’s so important. Family is so important. It’s what really matters. My

family has helped me get through this. And they help me get better. It’s really the only
thing I can rely on at the moment, and I’m talking about immediate family. If you don’t
have this in your life, the next best thing is a good friend or friends. Anyway, it’s just my
point of view. Happy New Year everybody. Let’s make it a good one.

Chapter 31 – December 20, 2011

I think I mentioned before, I used to run the mile race. It’s 4 laps around a track.
Imagine running a sprint and just hold back a bit. That’s how fast it is. It’s a tough race.
You feel like hell on the back stretch of lap 3, but there would always be someone like
your coach to cheer you on. That’s how I feel right now. You see, they, my therapists,
decided I have plateaued. I will no longer receive physical therapy and occupational
therapy from my main hospital. This is their decision. It’s like getting to the back stretch
of lap 3 in the mile and no one being there to help you. I guess my profound thought of
the day would be: A mistake not corrected is a mistake learned.

At the moment, I’m really angry because I can stay at home and practice what they taught
me, but I may make mistakes. If you make a mistake in your training, and you do it over
and over again for months it could hurt you, set you back. I need to go to therapy. Not
only to guide me, but also for them to educate me. It seems crazy to me. It doesn’t make
sense, but then again, look at my situation. What makes sense?

It’s ironic that we talk about therapy like this because it was a year ago this week that
I came home. I look back at that time, I was a mess. I’ve gotten better. I guess next
year I be even better. But I need therapy. I have traumatic brain injury. It’s very slow
long drawn out healing process. I wonder if the insurance for therapy takes this into
consideration. Anyway, my friend whose typing this, and I agree, one door closes,
another opens. I’ll just find another place to do therapy. But it doesn’t make sense
because my old place knows me. I said, whose decision is it? I could understand if I
really had plateau’d, but I feel I’m getting better. I really believe it. It’s just so damn
slow. And they said it’s up to the therapist. I don’t get it. They do set goals, but they
said I’ve reached all their goals. No one’s asked me. I have some goals. I’d like to walk
again. I’d like to feed myself again. I’d like to take pictures and all that is starting to
happen. With the therapists help I walk with other people help I feed myself. With other
people’s help I take photos, but I know I can do it by myself. OK. I’ll put away my soap
box now, step down and be quiet. I’m just pissed off. But you know what, sometimes
when you get pissed off, it puts fire under your ass. You get angry and you work harder.

I’m going to end on a positive note. It’s almost Christmas. There’s such a good vibe
going around. I went to my father’s church the other day and my friend was singing with
the choir. The same person that’s typing this for me. She sounded beautiful. It was a
nice and welcome break from the monotony of my world. Merry Christmas everyone.
I’ll talk to you in a few weeks. Love, B. Nice

Chapter 30 – December 13, 2011

I remember what Winston Churchill once said, “When you’re going through Hell, keep
going.” That’s my mantra.

My cousin suggested I break this down into operations, etc. But, I have a hard time
remembering everything. It all blends together. The first operation on my brain. The
second operation on my brain. They all blend together. One thing for sure is, the second
operation was more invasive. My life right now is difficult.

I am making progress and I am getting better, but it’s very slow. They have me walking
in therapy, but they are starting to limit my time there. It seems I’ve met the goals they
set forward. All insurance stuff. You have to make sure you know how to work the
system. Make your own goal. Take charge. Make sure you’ll get as much therapy as
you can get. It seems like the system is like a cookie cutter. They try to bunch everyone
up. Each person is different. I need more than average help. I’ll keep fighting for
therapy cause it does help me. Bottom line is, don’t take no for an answer. Fight for
your right to have therapy and get better.

Sometimes I’m glad I didn’t know then what I know now. If I knew how hard this was
going to be, I don’t think I would have survived. I would have possibly given up hope.
Who knows?

My friend just asked me what keeps me going now. I guess I would have to say, my little
one, and my love for photography. And the prospect of getting better. I do get bummed
though. I see some people that will never ever get better. They’ve been severely
cognitively and physically damaged. Ignorance is bliss. They’re not aware of how bad
they are. As a matter of fact, they seem happy. I just feel bad for them. I differentiate
myself from them, but I do sympathize with them. I just got a little lucky, that’s all.

Let’s see, my profound thought of the week would be: Ignorance is bliss.

Sometimes it’s better not to be aware of what’s really going on. I always hear my
grandmother’s voice saying, “Don’t borrow trouble.” Talk to you next week. B. Nice.

Chapter 29 – December 7, 2011

My friend was reading my last blog I did. I mentioned having friends is
important. It’s so important to have someone look over you. I’m lucky to
have my family and friends. I would say that the most important thing is you
have someone look after you. So many people slip through the cracks. So
many people abuse the system. I’ve seen some horrible things. But we won’t
talk about that now. That could be another story in itself.

I’m sorry. I got upset. When you’re in the hospital for over 2 years, you see
some crazy stuff. Stuff that changes your life. Stuff that makes you think
twice about things. Not much to say, but it’s very sad. Just make sure the
one you love has someone to look over them.

Remember, the other important thing is to look at things on a positive note.
It’s so important to think positive all the time. Today, here is a gloomy day,
but I just think it’s sunshine. You gotta do something that makes you happy.
Stay positive.

Today, at therapy, they did a refresher course on swallowing water. They
electrify the muscles in your neck, which helps you to swallow. It’s a bit
uncomfortable, but it seems to work. I’ll do this for 2 weeks and they’ll give
me a swallow test. It’s kind of cool, and it seems to work. The other thing
they did at therapy was more strength building exercises. This helps me
get stronger and get better. One thing the therapist said was don’t work
too hard. Make sure you take time to rest. It’s important to let the body
regenerate. I have to pay attention to this as I tend to over do it.

It was cool the other day. Some friends came by and they gave me an iPad.
They had all chipped in and they bought me an iPad. They put applications
and games, etc., on it. It’s a little advanced for me right now, but it will help
later. It was a cool thing they did. It will help me get better for sure.

I’m sitting here trying to remember something important I was going to tell
you. For the most part, I have a very good memory. But, it seems to go in
and out right now, sometimes.

I have a good shrink. She came by today to see how I was doing. It’s

important to have someone like this in your life. She said I was doing well. I
don’t take any happy pills or any anti-depressants. It’s only natural to be sad
when you go through something like this. I have my moments of course. But
I stay happy and positive for the most part.

I did remember one thing. I talked a little about it the last blog. It’s a
little word called frustration. I get so frustrated. As I’m basically trapped
in my own body. I would love to go for a run, pick up the phone and talk to
friends. Anything to break up the routine. What can I say. Frustration is
huge right now. My friend reminded me, it’s a new stage I’m going through.
I guess it’s good. Look at it in a positive way. I can almost do what I want,
but I can’t quite do it. I’ve been standing a lot and I’m walking at therapy.
These are all important things. But I still get frustrated. I still find it
amazing I can run a sub four minute mile, and yet I can’t walk down the hall
right now. (I used to run a sub 4 minute mile.) I can’t remember what I was
going to talk to you about. Just stay positive. That’s all I do when I get
frustrated. I try to think positive. I’ll never forget what a nurse once said
to me. Take a gray day and make it blue. I’ll talk to you guys next week.
Love, B. Nice