Chapter 27 – November 15, 2011

Sorry to miss a week. I went somewhere. I’m not sure where, but it went
by really quick. I got an email from a friend of mine. It was pretty cool. He
finished a New York City Marathon and he said that he was inspired by my
hard work. It kept him going just thinking about what I was going through.
Basically helped him through the race thinking about my situation. I’m glad I
could help out and glad he finished the marathon.

You see, when you’re in a state like this, Traumatic Brain Injury, having
friends support you is really important. You’re constantly keeping evil
thinking at bay. And to get positive reinforcement is really helpful. Just
having a friend send an email or stop by really helps you mentally. Friends
are very important. I’m lucky to have many great friends.

One reason why I skipped a week was because I went to Mauntauk to get my
surf boards and windsurfing equipment. I was once again reminded that I
have great friends. They all helped out and got my boards out of storage.
My one friend said to me, “Man, you got a problem!” Because I have 16
boards. No one really understands unless they surf and windsurf. There is
a different board for each condition. There’s boards for big waves, boards
for small waves, etc., etc. It was a fun road trip. An old friend helped me
out and drove me out there along with my mother. I stayed at a hotel on
the beach, just down from the house I built. Was a great road trip. A much
needed escape from therapy. Remember, life is therapy.

Speaking of therapy, I just found out they are going to limit my occupational
therapy. That’s basically therapy from the waist up. It’s kind of good new/
bad news. I think I do better when I have more therapy. It kind of fine
tunes you. Sure I could do what is done in therapy, but it helps to go there.
And besides, it’s nice to get out of the house and talk to other people.

My mom’s been reading to me. Cause I can’t really see in single form yet. It
still shakes. It’s very difficult to read. Anyway, she’s reading to me a book
written by a family friend, an artist named Chuck Close. I strongly advise
you read the book. It’s good. Man, that guy went through hell. At the
moment, the most important thing I get from it and after talking to him, the
most important thing is do what you love to do. He loves to paint, so painting

got him through the tough times. I love photography. I still do photography
to get me through the tough times. Do what you love.

One thing I’m doing, I would strongly suggest you do when you’re in this
situation, each day goes by slowly. And they all blend together. It’s hard
to see any difference and change. It’s hard to see yourself getting better.
I strongly advise you have someone videotape you, just talking, maybe
once a month. I’m doing this right now. I had my old assistant come up
and videotape me. Just having a chat. It will show your improvement and
encourage you. That’s all for now. I’ll talk to you guys next week. B. Nice

Chapter 26 - November 1, 2011

I guess my profound thought of the week would be, take it slow and
controlled.  That's what my therapists say.  In therapy this week I walked
with an Arteo harness and walker.  It felt great to walk.  Each step is
thought out, planned and executed.  Slow and controlled.  It's amazing to
me, I ran across America, yet, here I am just barely making it down the
hall.  I guess both are achievements and marathons in their own right - long
distance runs.

This week was a crazy week.  We had record snowfall on leaves that were
just turning.  It was the week before Halloween.  The event caused a lot of
branches to break, trees to fall and power lines to tumble.  There were
blackouts everywhere.  Including our home.  We still don't' have any power
and it's been almost a week.  My family has cabin fever.  My mother and
father are like cats and dogs.  I try to be a fly on the wall.  Never a dull
moment, and yes, life is stranger than fiction.

The County people from Medicaid stopped by to pay a visit.  I guess they
come by once in a while to check up on me.  A friend from Helen Hayes also
stopped by.  He was in the same room as I.  Was good to see them.  And it
was also good to hear them say, "Boy, you sure have improved."  It's great to
get some reassuring news.  It's like I said before, when you run a race and
there are people cheering you on, you're gonna run better.  I just thought
I'd share that with you.

Oh, by the way, my friend with whom I shared a room, he had an aneurysm.
He is so much better, you would never know he had a problem.  He was in a
bad way when I saw him last.  Remarkable what therapy can do to help you
get better.  The first time I saw him he looked like a wild man from Borneo -
crazy eyes, crazy beard, crazy hair, pissing all over himself and having a
great time.  Whenever he'd get a little cocky, I'd remind him of that
moment.  We talked about our room.  It was great.  We had him, he's
Jewish.  Next to him was a Black Panther.  The guy next to me was an Italian
Catholic drug addicct.  The there's me.  I don't know what I am.  I guess I'd
be a wasp.  But I just called them by their names.  One thing we did have in
common was, we were all messed up.

Now for my introspective thought of the week:  I have Traumatic Brain

Injury and we have no power.  This is not a good combination.  I felt so
helpless all week.  If something were to happen to me, I'd have no way of
getting a hold of anyone.  The cell phone works, but I can hardly hold it.  I
was on our porch the first day of the storm listening to branches break and
trees falling.  That's kind of how I fell.  I wish I could help out or build a
fire, help my dad carry wood, help my mom cook.  I can't help at all.  It's a
feeling of helplessness.  Well, soon the power will come on.  We'll get heat
back.  Lights back.  Everything will get back to normal.  I guess it's kind of
like me.  I guess I can't wait for my power to come back.  That's OK.  I've
had a lot of time to think.

The last thing I'd like to say is, I think more attention should be given to
our caregivers.  For example, my mother, father, sister, cousin and friends.
They've all spent valuable time taking care of me.  Yet they get no financial
support.  I could easily become a ward of the state or just dump myself in
some institution run by the State.  The system works, but it needs some
tune up.  Something is not right.

Anyway, it doesn't make sense that there's people out there who need help
and there's people willing to help, but there's a disconnect between the
two.  OK, I'll get off my soapbox.  That's it for now because I have no more
to say and my friend, Julie, is writing this.  Remember, we have no power.
See you next week.  B. Nice

Chapter 25 – October 24, 2011

I’d like to tell you about a very strange dream I had. You see, when one door closes,
sometimes another opens. My dream was this: I was standing in a room and a door
opened. It opened to a nice starry sky, with the ocean. I cast a rope line towards the
water and a white hand came up and pulled out a person and that person was there to help
me. And then I woke up. How weird is that? And no it wasn’t Michael Jackson, but
there was a white hand. Anyway, I just thought I’d share that with you.

Here’s my profound thought of the week: When you are on a commercial airplane, they
advise you to put on your oxygen mask before you put on your child’s. This is so you
can stablize yourself so you may assist your child. That’s kind of how I feel. I feel like
I have to get myself better so I can help my child. This is why I work so hard. Maybe
too much. I seem to be tired all the time. But, there’s no other option. Sure I could sit
around and watch TV all day, but therapy is much more important.

I was talking to my friend who’s writing this for me. We were talking about rest. I do
work so hard almost every day. They do advise me at the hospital to take one day off
every week. Rest. Sleep. Whatever. Spend time alone. I usually take Sunday or the
weekend to chill out. Rest is as important as working out. Your body will heal with rest.
It’s just my perspective. I feel better when I rest. I always take a nap in the afternoon
about an hour and I go to bed around 9:30. Wake up at 7:00. Lately, I’ve been waking
up in the middle of the night. Staring at the ceiling. Sometimes it’s hard to get back to
sleep. Remember what I said before. Never think too much.

My niece and nephews live right next door with my sister. I often see them play soccer.
I really wish I could join them and play. When I see them kicking the ball, I often
imagine kicking the ball. That’s got to be good for me. Either way, I wish I could play.
I feel like an old man, and I’m only 50. What a drag.

On a happier note, I’ve been skyping with my little one. It’s almost Halloween so I put
on different outfits when I see her. The reaction is fantastic. She stops what she’s doing
and she goes, “Daddy, is that you? You’re so silly.” She’s 25, just kidding. She’s 4
and ½. Almost 5. Once again, I’ll miss Halloween with her, but it’s great to see her on
skype.

Just one last thing. My aunt and uncle came by. They’re from Minnesota. They came
to stay for a few days. It reminded me how important family is. With their support, my
sister’s and my mother and father, I have been getting better. Family is so important.

This is kind of corny, but I’d like to share something with you. When I was in intensive
care I had them play reggae over and over and over again. It’s got the same beat as the
human heart. But I remember one lyric that stood out all the time. It was from a song
that Bob Marley did. It goes, “In life there’s lots of grief, but your love is my relief.”
Sometimes all you need is a hug or someone to hold your hand. That’s it. See you next
week. B. Nice

Chapter 24 – October 17, 2011

Here’s a profound thought of the week: It’s borrowed from a friend. I was skyping with
him the other day and he said this: Life is like a crystal glass you drop upon the floor.
You can glue it together but it will never be the same. I thought that was a good analogy
to how things are with me right now. I reminded him, if you put it back together it will
never be the same again, but it will still work. You see, nothing is the same. Everything
changes. I’ve yet to figure out why this happened to me, but what I realize is, I’ll see it
as a good life lesson. Anyway, that’s my profound thought of the week.

I have to keep reminding myself of the words my neurologist always quoted. He said,
have patience. Man, I’m chomping at the bit right now. It’s tough to be patient. I just
want to get better. I’m stuck here at my parent’s house and just to get out in a car makes
my day. It does help to have friends stop by. And it does help to have people bring
you food. It’s amazing how little things can brighten your day. The other day a woman
friend of mine donated some money towards getting a machine for me to get better.
That’s cool. My mom ordered the machine today. She even got about 20% off. It all
fell into place. The machine is called A New Step. It’s kind of like a recumbent bike. It
helps a lot with walking. I strongly advise you have someone at least 2 people to help
you. That’s what I’ll do.

There will come a time when you have to balance your life and therapy. For example,
my father had an opening of a show. He’s an artist. It was a good show. I went, but it
really made me super tired. Just something small like that will wipe you out. But it’s
good. You see, life becomes therapy. I think I’ll end on that. Life is therapy.

I’ll talk to you guys next week. B. Nice

Chapter 23 – October 6, 2011

Man, I’ll tell you. Depression is a real drag. I can’t help it, but, I often get depressed.
It’s something that’s always lurking in the background it seems. Who wouldn’t be
depressed if they were like this. I just have to make a physical progress report. On the
positive note, my eyes seem to be moving together. Before, my right eye went up and
down and my left eye went side to side. They were cross-eyed as well. Not fun. A lot
for the brain to deal with. Now my eyes move up and down together. But I still see
cross-eyed. I am still very dizzy. I have a hard time feeding myself, or using the
toothbrush. But, overall, I feel a sense of clarity. I feel like I’m going to get better. My
therapist wants me to do a lot of weight bearing exercises. For example: He’ll put 2 and
a half pound weights on your wrists. It helps me because it stops the shaking. You see,
I’m not aware of where my hand is or feet. I have to look at my hand to see where it is. I
used to call my hand the meerkat, because I’d wake up at night and my hand would be up
in the air. I thought it was down by my side. It would scare the hell out of me. Imagine
getting in a fight with your own arm. Never a dull moment. Anyway, I kind of went off
on a tangent there. I was talking about depression, and yes, I get sad. But, you know,
you gotta think of positive things. For example: I’m stuck living at home with my
parents, home meaing, my childhood home. My parent’s house. But the positive of that
is that I get to hang out with them and get to know them. There’s lots of positive things.
I’ve been taking pictures of how I see the world right now. I’m having a one man show.
Anyway, I just try to think of the positive things. On a positive note, I got a new
wheelchair. It allows me to have more freedom and independence. I use my own legs to
get around. It’s good exercise and I don’t feel confined anymore. Before, I relied on
family and friends to move me from point a to point b. Now I can do it on my own.
Soon, the hands will get better and I could propel myself with my hands. Right now, it
dosen’t work. My fingers get caught in the spokes. Not a good look. I still rely on my
Mom to do all my email and my friend Julie to do all my blogs. But, my hands will get
better one day.

OK, I’ve been thinking about this for a while, whether or not to air all my dirty laundry,
but it might help someone somewhere, so I’ll do it. You see, when you have an injury
like this on your brainstem, it affects many parts of the body. For a long time before, I
would have problems with my relationships. It was difficult sometimes to be intimate
with my girlfriends at the time. I never addressed it because it happened off and on, but
it got worse as I got older. Looking back, I should have addressed the issue right away.
But I didn’t. So, my advice would be don’t be shy about any problems you have with
intimacy. Talk to your doctor about it.

OK, let’s talk about something else. Like, bunnies or kittens or sunny days. I’ll go back
to how I started. I’ll talk about the depression topic again. I used to go for a run or go
surfing. It was always some form of physical exercise to get me out of a funk. But I
can’t do that now. That is, until I discovered a thing called a new step. It’s a machine
that allows you to exercise safely. I’m going to get one of these. They are a bit pricey,
but it’s worth the investment. I wish I could go for a loooong run, but that won’t be until
later.

Well, it’s been over 2 years since my first event. I’ve been training and fighting for 2
years, every day I do some form of therapy. I’m getting a little tired of this. I have to
remind myself to stay positive. It’s been a long journey, but there’s gotta be some thing
good that comes out of this. I really believe that out of really bad things something good
comes out of it. I have to believe that. Anyway, that’s the end of my pity party. It’s easy
to become bitter. You have to stay positive. I saw my surfing buddy the other day, and
we were talking about our old surf spot. They sent me some photos of a beautiful day we
had in the fall one year. Overhead waves, clean off shore wind. Warm breezes and cold
water. The perfect day. Good memories. Anyway, I’ll talk to you guys next week. Bye
for now. B. Nice.