Chapter 43 - March 27, 2012

My Aunt and Uncle win the prize for the best answer to my question.  Yes, the device you see in the previous blog is worth every penny, every 500,000 pennies!

Imagine this, imagine you're in the Bahamas on a beautiful beach listening to reggae, drinking a beer, working.  You're on your last photograph of the day.  You get done with your shoot, give out a holler, "Yipee, we're done!"  You throw down your sunglasses, your hat and your shirt, you hand the camera and beer to your assistant, kick off your flip flops and jump into the ocean.  The water is super salty.  You play in the waves for a while, come out, and the hair and make up artist pulls up a chair to give you a haircut.  You grab a towel and a beer from your assistant and you get an awesome haircut on the beach. After you're done, you jump into the sea with the beer, of course, and you wash away all of the cut hair.  You come out, towel off, put your shirt on and go off to have dinner, cause of course, you're shooting in front of your favorite restaurant and bar in the Bahamas.  That was a good day at work for me when I was a fashion photographer.  It's moments like this I would think about when I was in a bad way, going through what I'm going through.

The other thing I try to think about over and over again was one specific day I had with a friend.  I was windsurfing in South Hampton NY.  The moon was rising and the sun was setting.  You would tack between a full moon rising and a sun setting.  The wind was offshore so the waves were super clean.  I was powered up on a 4.7 meter sail (which is small).  And I was on my fiberglass wave board.  It was a great day.  I guess what I'm saying is, when you're going through crap like this, think about a good spot to be in, and try and stay in that spot.  Just a little break will make a big difference.

Hi everybody.  How is it going out there?  My week has been up and down.  I got another cold.  It's in my chest, and man it's kicking my ass.  I work through it but it's tough.  I guess you gotta just work through it.  Same old thing.  I go to therapy all day.  I've been doing water therapy.  It's great.  It's a good way to start walking again.  I've been doing that and painting a lot with my father and cooking a lot with my mother.  It's a good time.

What's also good is to have great friends come by.  I've had many visitors and it's really good for the soul.  Various people will help you out with different things.  I've got a few irons in the fire, a few projects going on and they help me with these.  It's good to have projects to stay busy.  You'll find staying busy is so important.  Do what you love to do.  Speaking of doing what you love to do, I spoke to Chuck Close the artist the other day.  I was inspired to call him because I saw his work at the Met in NYC.  I went to the Met with my parents the other day.  They both have helped me tremendously.  They encourage me to keep going and take trips like this.  It was a great distraction from my routine.  It was tough but great.  They have a new American Wing there.  I recommend seeing it.  The reason why I was inspired to call Chuck was, he always said, "Do what you love to do."  He told me to keep the faith, keep going.  That's why I do my photography projects.  I'll keep you posted.  I'll talk to you next week.  Have a good one.  Love, B. Nice.

P.S.  Below you'll find some images I painted with my father who has helped me tremendously.  I like them because a year ago I couldn't even move my left finger.  I can't wait to see what next year brings.  Happy Easter.

Chapter 42 - March 20, 2012

Happy Spring everybody! and happy birthday to my friend Tim who's out there somewhere!

OK, so I'm going to pull out my soap box and megaphone and I'm going to preach a little bit.  This has to do with a flashback I had.  It involves being at the rehabilitation hospital.  You see, there were a lot of young kids who had been on their cell phone, either talking or texting.  Now, I don't want to see any of you texting or using the phone while driving.  I saw some pretty horrible stuff.  There was one girl, you ready for this?  This one girl, they had removed part of her skull and surgically put in her belly for safekeeping while they worked on her brain.  I would have breakfast with her every morning.  There was the same conversation over and over and over again.  She had no memory.  She was happy, but pretty messed up.  That was from one cell phone call.  You think it was worth it?  I don't think so.  Anyway, I just thought I'd share that with you.  Don't get distracted while you're driving.  Remember you are a glance away from disfigurement or death.  Anyway, I just thought I'd share that with you.  Don't get distracted and drive.

I had a nice dream the other night.  I was sitting at a table.  It was a simple wood kitchen table.  The morning sunlight was streaming in through big windows.  In the middle of the table was a glass of water and the sunlight was passing through it.  Because of my condition, I was forced to sit there and stare at it.  No matter what angle you looked at it, it was beautiful.  It was beautiful and yet, if you were normal, and running out the door, you'd go right past it.  I guess what I'm saying is my condition has forced me to slow down and really look at things, really appreciate.

The other thing I really appreciate as well is the fact that my daughter came to visit me.  It really makes my month.  It reminds me why I keep fighting to get normal.  It was great to have her here.  She's growing up and you can actually have a conversation with her now.  She's 25.  Just kidding.  She's a little one.  Anyway, it was great to have her here.  Other than that, it's been the same old routine.  Just working at getting better.  I've been spending more time up in my sister's theraputic riding center.  It's fairly ironic that she started a theraputic riding center right when I needed therapy.  The horses are great for the soul.  I'd like to just hang out with them.  It's a great project she has.  I wish I could help her more.  When I get better, I'll try and help more.  If there's anyone out there with some spare time (ha ha) or ideas, let me know.  It's an hour from New York, and it's in a beautiful location.

My friend here just asked if I had taken pictures there, and no I haven't, but I plan on it.  At the moment, they have a website.  www.myfeettakewings.org  If you have time, just google it.

My other project I've been working on is my cross country trip.  I plan on going across America and doing landscapes.  I'll show the world how I see things.  It's pretty wild.  I'll keep you posted.  Oh yeah, a guy came with a van the other day, a demo.  A van similar to the type I'd take across country.  It was pretty exciting.  I can't buy a home, but I can buy a car.

Other than the unusually hot days, the random forest fires, the wild bees, everything has been really normal.  My friend here said I'm getting used to a normal life.  I'll never get used to normal.  Have a good week.  All the best, B. Nice

P.S.  I included a photo of me at therapy.  How much do you think this piece of metal cost?  Send me your guesses.  You won't believe it when I tell you.

Chapter 41 - March 6, 2012

Once upon a time, there was a prince that lived on a hill above the sea.  One beautiful summer morning, he awoke and decided to check out the surf.  He grabbed himself a coffee.  He grabbed his dog and he walked down to the cliff to see the waves.  On his way, he crossed a bridge, and on the bridge was a big green frog with a gold crown on her head.  The green frog said, "Kiss me.  I'll turn into a beautiful princess.  We'll make love all night, get married, have a happy life together."  He put the frog in his pocket and walked down to check out the waves.  She said, "Hey, aren't you going to kiss me?"  He took a sip of his coffee and he said, "Listen, after what I've gone through, and the condition I'm in right now, I'd rather have a talking frog."  Oh yeah, and by the way, the surf was up.  It was a good day.

Hi everyone.  I'm not sure if I told you, but I'll share it anyway.  I met my neuro surgeon the other week.  After meeting with him, he put his pen down, pushed back from the desk and said, "Brian, you give me hope."  That's cool.  You see, when you're like this, all messed up, it helps to have positive reinforcement.  For example, I had two friends come by last week.  They hadn't been here for three months.  They said they noticed positive and good improvement.  I don't feel it, but they say they see a good difference.  It's really encouraging.  Although, one girl said I had a big belly.  She even gave my belly a name.  It was kind of cute.  Weird but cute.  Thank God she didn't see my belly six months ago.  She would have given my belly a name and a zip code.  It was big.  When you're in the hospital, your body changes into some weird form.  I looked like Golum in Lord of the Rings.  They fed me thickener in my liquids to make it easier to swallow.  The drawback was that the thickener was very starchy.  It gave me a belly and stopped me up.  So now I use a juicer and drinks like mango and peach.  You know, stuff like that.  It's all natural and good for me.  Try banana juice in your coffee.

Speaking of thin liquids and swallowing, I'm going to a special class, one that teaches me how to swallow without aspirating.  Aspirating is when liquid goes into your lungs.  Anyway, they put electric charge on my neck, they put the charge on certain muscle groups.  I've been taking the class for about a month now, three days out of the week.  I notice a good improvement.  It has helped me get better at swallowing things like coffee, water, you know, stuff like that.  I highly recommend it.  I'm not sure if it is therapy or torture.  Either way, it works.

It's been fairly quiet this week.  I continue to go to water therapy and do therapy at home.  My days are long and tedious.  It's the same thing over and over again.  Wake up at 7.  Have some breakfast.  Use the bathroom.  Then my therapist comes.  I take a shower.  Do therapy until noon.  Have lunch.  Take a nap.  Do more therapy from 2 to 6.  Have dinner.  Go to bed.  Really exciting.  It's been like this for almost 3 years now, but I am getting better.  I was thinking the other day, hell, I couldn't even move my finger.  Now I'm feeding myself.  It ain't pretty, but it works.

I uploaded a photo of me at therapy.  It's pretty exciting to be able to walk again.  It's no mile run or 10K run, but it sure feels good.  I've been on my back for a long time.  Feels good to stretch my legs again.  I'll make it a short one this week.  Have a good one.  Love, B. Nice

Chapter 40 - February 28, 2012

Hi everyone.  The kindness of friends, strangers and family, that's what's really important right now.  I had a friend visit for one week.  She really helped my mom out.  It made life so much easier.  Little things like this will really help you.  Anyway, thanks everyone for those who helped me help myself.  I really appreciate it.  It makes things a little easier.  Thanks for the support.

You know, I never really talked about it at length before, but I think our caregivers don't get enough attention.  Attention in many ways, both recognition and financially.  It's a huge burden on them.  They work really hard to take care of you.  I mean, I wouldn't be alive if it weren't for them.  You'll find you need a point person, someone that's kind of in charge.  In my case, it's my mother.  Whoever you choose, it's important to have a point person.  I guess while I'm talking about a point person, I realize that I wish I had disability insurance, term life insurance and good health insurance.  These are all things that everyone should have.  Just an observation from my point of view.  I'm not a doctor or anyone in the medical field, but I am someone that has been pretty messed up.  Who knows, it might help someone out there.

I've been doing my water therapy.  It's been great.  I'm walking and running in the water.  I remember my first surgery on my brain, it really helped me get to the next level of walking.  You'll do water therapy and then water therapy with weights.  You basically get more weight bearing loads on your arms and legs.  It gets you ready for walking on land.  It's a long drawn out process, but hey, I think I got the time.  ha ha.  I just remember to be very very patient.

Patience is a really important thing right now.  I find myself to be very anxious.  I'm in a hurry to get better.  I guess there's no time limit.  Who knows when I'll get better.  My friend here said I get better every day.  But, from my point of view it's not quick enough and I don't feel it.  I just wish one morning I'll wake up and shake it off, "Man that was a drag, I think I'll go for a run or pick up my guitar and start playing again or go for a surf."  Anyway, soon it will come.  That's what they say, isn't it, Soon it will happen.  I gotta keep up the faith and keep hope.

Oh, yeah, I just remembered I've been drawing a lot.  I had a dream about drawing and it was very simple.  I just drew circles and circles on paper, and then I did a wash of watercolor.  You see, something as simple as this is very difficult.  But, it's also very rewarding.  Remember, life becomes therapy.  Anything you do will advance you.  It will make all the frustrating times more tolerable.

I have my mother bring me outside.  I photographed a tree that had fallen over in a windstorm.  Some landscapers cut it up into many pieces.  I photographed it as it looked like a piece of art.  It was really cool.  I guess my point is, when you're like this, you tend to notice things in front of you.  I guess it's 'cause you don't move for an hour, ha, you kind of just sit there and stare.  The point is, you notice things more.  You take the time to look at things.  When you're normal, you might rush on to the store or an appointment.  When you're like this, you're kind of forced to observe things.  It's kind of a gift in a way.  I never really thought about it before.  Maybe it's a way of self-preserving oneself.  Keeping yourself sane.  Everyday things become beautiful.  What do they say?  Take time to smell the flowers.  Anyway, remember to take time to appreciate things.  I paid a heavy price to recognize this.  But, you know, life is like this.  I guess it takes being like this to make one recognize things.  I appreciate things so much more now.  My friend just said I'm just like a big girl crying at butterflies, how beautiful they are.  It's true, I'm a big mush.  Anyway, today has been a great day.  Spring is finally here, it's nice out.  A good day.

Anyway, I hope you guys enjoy your day.  See you next week.  Love, B. Nice

Chapter 39 - February 21, 2012

Hi everybody!  I have to remind you of something.  You probably already know it, but be careful what you wish for.  I remember a couple of years ago, I was looking at my portfolio.  I liked my images, but I wished my photography had more depth to it.  I know plenty of guys, other photographers that can shoot what I shoot.  It all kind of looks the same after a while.  I was looking for unique style.  Well, I have it now.  What a price to pay though.  I've been taking pictures of how I see the world.  It's definitely unique.  My point of view.  I think I'd rather be a boring photographer than be like this right now.

When you go through something as powerful as this, it definitely affects your creative side.  I think my photographs, right now, are really honest, and personal.  I'll share them with you soon.  It does make me happy when I can take pictures.  So, remember, be careful what you wish for.  You never know how it will come about.

I had my new water therapy today.  Remember, they kind of cut me off from my other therapy.  They said I had plateau'd, but I know I'm getting better.  This new water therapy I go to really helps.  I was walking for about an hour in deep water and shallow water.  Man, what a work out.  It really kicked my ass.  My friend here asked me if I get sore, but it's more of an overall tired feeling.  I have the strength, but the signal from the brain to the body is kind of messed up.  It's re-establishing, but it's messed up right now.  You see, anything I do makes me tired.  Talking, looking, feeding myself.  Anything.  So, it's a good excuse to be really lazy.  When people see me, people I haven't seen in a long time, when people say, "Wow! What happened to you?"  I always say, "Nothing, I just got really incredibly lazy.  I like people to feed me.  I bring my own chair everywhere.  I like people to bathe me.  I like people to move me from point A to point B.  I'm just lazy."  If only life were so simple.  I wish I was just lazy.  If anything, I'm working harder than I ever have.  I used to play hard.  Now I'm working hard.

Once again, I'm having another tough day.  Like I said before, some days are good.  Others are bad.  Today I'm incredibly tight on my face and neck.  It's difficult to talk.  Gets kind of frustrating.  But, there's always tomorrow.

Oh, yeah!  I went to a motor home exhibition yesterday.  The people there were really interesting.  I wish I had a set up and I could do portraits.  Talk about characters.  It was fun and could be another reason why I'm tired today.  I went to the show to do some research on my trip coming up.  I got some good ideas from it.  It was worth it.  I went with my mom and my friends as well as my sister and her kids.  It was fun.  It's good to have little adventures like this.  It gets you out of the house and away from the monotony of therapy.

Speaking of therapy, I brought home my Up & Go machine.  It helps me walk.  It teaches me how to walk.  It's great.  Lot of hard work, but it's good.  My parents bought it for me as medicaid didn't cover it.  Here we go again with the thoughts I have about therapy insurance.  That sort of thing doesn't make sense to me.  I mean, I'm getting better.  I really think that some people would say, the hell with it.  Just throw in the towel.  Collect their checks for disability and watch TV all day.  Makes sense to me to get better with the right tools.  Get better.  Contribute to society.  Work.  Pay taxes.  You know, all that stuff.  Contribute to society.  Not be a burden.  All right.  I'll get off my soap box now.  Just like everything, there are some good things and some bad things with our system.  I think it's time for a tune up.  Anyway, that's just my point of view.

Another thing I'd like to talk about is friendship.  I have a friend visiting me for about a week.  It's really important to surround yourself with friends.  Especially if you're living at home.  That's a whole other topic.  Anyway, it's important to have friends.  All my friends help me a lot.  It makes all the difference in the world.  I couldn't have done this alone.  NO way.  I have good friends in the ICU, around my surgeries, now.  It's important.  They keep you going.  The other important thing is, think about someone you really really love.  Like I really love my little one.  I don't get to see her as much as I'd like to.  But remember when you're on a commercial flight, the oxygen mask may come down and you have to take care of yourself so you can look after your little one.  I guess my life is like that right now.  I gotta get better so I can look after my little one.  Sorry about that, I went off on a tangent there.  I just miss some people sometimes.

That's all for now.  Let's end on a positive note.  It's been a great winter here in the northeast.  You don't know how appreciative I am for not having snow.  It sucks to fall on your ass when you're like this.  The paths are clear.  That will be my profound thought of the week.  The paths are clear.

See you next time.  Love, B. Nice