Chapter 2 - January 28, 2011

1/28/11
I’m finally out of the hospital. Turned 50 and living at my parents. I think I’ll have to go see a shrink for that. My wife is in Texas with our daughter and is suing me for divorce, so I’m on my own. Starting over. Just learned today that I need to set up a trust fund in case I get any money. I don’t want to jeopardize my Medicaid. They have very strict rules that I must go by. I just made one for food and clothing and to look after Sam, my daughter, when she comes to visit. My therapy and operation have been covered by my primary medical insurer and Medicaid. Thank God, as I have no money.

I got a new puppy for my birthday, which was last week. I still miss my dog Buster, but it is nice to have a puppy around. His name is JoJo and he’s pretty cute.

This weekend I’m looking forward to taking more photographs. It has been snowing here a lot for many days. It’s a Winter Wonderland. I remember I recently met with a famous artist named Chuck Close. He is living in a world similar to mine. He had some really good advice. Do what gives you pleasure in life. Have a good shrink, which I do. Work on your independence as much as you can. Concentrate on your passion. In my case, that is photography. Never give up.

Last night I kind of had a bit of a panic attack. I was worried about what will happen to me. I really miss my daughter. It’s hard being sick like this. I feel trapped in my own body. It’s very claustrophobic. I’m alert and sharp as I always have been but I can’t speak well or move my hands or anything. Can’t even roll over. No privacy ever. Nor can I do that thing which I’d like to do. Even turn on the TV. I just lay in the dark and remember what my doctor always said, “Be patient.” So I wait. It’s bad enough being sick, but worrying about a divorce on top of it makes things even more scary and difficult. I have to find the energy to do both. I have a good Texas lawyer and delegate as much work to her as I don’t have the energy to get well and deal with a divorce.

A friend of mine, Fran Drescher is going to be on Oprah today. I’m looking forward to seeing her interviewed. Fran has been very supportive and understanding of my illness. I guess it’s because she went through some tough times herself. She understands. It will be good to see her being interviewed. Needless to say, I think she is wonderful.

Every day I do a bit of therapy. It’s kind of like homework. It is needed. I do exercises that are given to me by my speech PT and OT. Physical therapist and occupational therapist. It’s a bit painful, but I feel like I’m in training. As long as I remember the more work I do, the faster I’ll get better, the faster I’ll get through it. Even the smallest amount helps.

Speaking of help… Your donations, if you choose to donate, will help me with food, transportation, clothing, and therapy. All this is not covered by insurance. I never asked for help before. As a matter of fact, just before I got sick, I did a book called “Rescue Tails.” I donated all my proceeds, 100%, from the sale of the book to charity. I stuck to my word and am still giving them all the money, even though I now need it myself. I should do a book called “Rescue Brian.” I guess your donations will validate this fact. Thank you again for your support.

One thing I learned through this whole ordeal is to stay positive. Like a business plan, have a vision of the future. Have a goal to reach. Wallowing in self-pity will get you nowhere. It’s o.k. to feel bad. It’s natural. But there’s a time for everything. You’re sad for a while, but then you cast that aside and move forward.

Chapter 1 - January 24, 2011

1/24/11

The reason why I’m doing this blog page is to update my friends as to what’s happening and to help other people that may have a traumatic brain injury like I have.  I’m not a doctor or nurse so everything is just my point of view, but it may help someone out there.

In August of 2009 I was working on a fashion shoot at a studio in New York City.  I started throwing up and was losing my yvision.  I thought it was the catering.  I managed to finish the shoot.  My assistant brought me back to the hotel.  I called my neurologist and he said to sleep it off.  My other doctors told me to go the emergency right away, which I did.  We called for a town car as it was faster than an ambulance, and it brought me to the hospital I wanted to go, NY Presbyterian Weill/Cornell.  Most ambulance will take you to the closest hospital.  That’s another reason why I took a town car.

Once I got to the emergency entrance of NY Presbyterian, I stumbled out of the car into my parents arms who were waiting there.  I had called them.  Some nurses that were off duty also saw my state, got a wheelchair and brought me into emergency.

They wasted no time at emergency.  They stabilized me, called my neurology team.  I was stabilized and prepared myself for an emergency operation to take place in a few days.  I almost didn’t make it.  I would have died except for the quick response at the emergency room.  That was to be my first time I avoided death.

They moved me to intensive care that night where they monitored me, stabilized me.   Two weeks later after a bout with two infections on September 8th, 2009, I had surgery.  I had a condition called cavernous malformation in the pons area.  Basically, in layman’s terms, it’s a slow malformed capillary thing on the brain stem.  Most people don’t live having this condition.  I got lucky.

The operation was successful.  It took 4 hours.  They managed to remove the bad malformation on my brain stem.  They also stabilized and put me back in intensive care where they did a few more procedures like; give me another operation where they put a feeding tube in, another operation to give me a filter to my heart because I had two blood clots in my leg and finally a third operation to give me a trac because I couldn't seem to be able to handle them taking the breathing tube out of my throat. I remained there for two weeks until they moved me to Helen Hayes rehabilitation hospital for rehabilitation.  I still felt like I was run over by a New York taxi and dragged down a block.  I felt like hell.

Rehabilitation is an amazing thing.  The people at Helen Hayes were so good to me.  I had to be taught how to do everything all over again.  It was like being a baby again.  But, with good therapy, I excelled and within five months I was fairly stable, but nowhere near normal.

I went home on New Year’s Eve and spent stayed at my parents.  It was a good New Year’s present to get out of the hospital.  Then my whole life started falling apart.  My life was like a bad country song.  My wife moved to Texas with my daughter, and she subsequently sued me for divorce. My dog died in my arms. My yearly check up showed I had to have another emergency operation.  So, my world was basically turned upside down.

After the first operation, and after 6 months of therapy at Helen Hayes, I was able to stand up holding on to something, walk with assistance, and more importantly, take pictures.  I wanted to show the world how I saw things.  The pictures are very abstract, full of color and have a lot of movement in them.  They are pretty close to how I saw the world.  I hope I can share the pictures with you one day, somehow.

The second operation really knocked me on my ass.  It seemed to be much more difficult than the first.  Though I didn’t have a trach everything seemed longer to recover from.  I was nowhere near to what I had accomplished after the first operation.  I felt like I lost the whole year.  It’s like starting over again.  Very frustrating, but like Winston Churchill said, “When you’re going through hell, keep going.”  So I do.

It’s been very difficult and the word I keep remembering, the words of my neurologist, “You have to learn the true meaning of patience.”  Take one day at a time and I do now.  I patiently wait for the day I can see normal and walk normal and play with my daughter at the beach.

It’s been almost 2 years now, and I’ve avoided death many times, but I’m still impatient.  I just want to get better soon.  Anyway, that’s pretty much my story.

With this blog I will update people on my progress.  Feel free to email me your comments or questions I’ll catch you when I can.  I still can’t type.  I need help from someone like my good friend Julie who is writing this for me.

B. Nice

Daily Home Rehabilitation With My Family And An Aid

Seems like I am always rehabilitating. When I arise from bed around 6 or 7am. I am met by my mom or dad. I have an aid that arrives 30 minutes later who helps me through my daily home rehabilitation which is separate from Helen Hayes. This is vigorous and is similar to homework. This entails the following schedule:

1. I receive a bed bath
2. Ankle and leg braces are put on
3. I sit up and practice my balance and push ups on either side with the aid(with Jessica or Deborah).
4. I then practice standing with the help of my aid.
5. I am helped out of bed to my feet and into my wheelchair and off to breakfast
6. At breakfast I practice feeding myself and am fed by the aid and practice various hand movements
7. After breakfast I receive a treatment for my lungs.
8. Then its off to the stationary bike. It takes three persons to help me ride but i am up to three 5 minute sessions.
9. After the bike I am off to the bathroom (this is not fun and an invasion to my privacy). I am stood up. My pants are taken down. I am positioned accordingly and then I sit back. Holding onto a handicapped railing, pillows are set around me to avoid falling. I am then left alone to attempt to go. I feel like a dog. Go. Come! Sit! Shit!
10. When I am finished with the restroom, my aid cleans my backside. Then helps me to my feet. I am taken directly to the kitchen table and ran through my eye exercises until the ambulette arrives.
11. Onto the ambulette. The driver wheels me from the kitchen to the ambulette and straps my chair and I in. My mom attends these trips as well. Sometimes an aid replaces my mother. The ride takes 30 minutes.
12. At Helen Hayes, I work a variety of things designed to help me heal. This takes 3 to 5 hours weekly.
13. Returning from Helen Hayes, I do Home rehab from 5 to 6pm. Usually leg strength and stretching.
14 Diner is around 6pm.
15. After diner I watch a little BBC.
16. Then its time for the bathroom experience again.
17. From the nightly bathroom its over to bed for much needed rest. I am helped from the toilette to the chair and rolled over to my bed where the aid helps me to my feet and I am properly placed into bed. Pillows are placed underneath me depending on how i want to be positioned. left side or right.
18. One of my parents sleeps in the room with me nightly as sometimes it is necessary for me to use the restroom again and other times i may fall out of bed or need some help.

What a day. Never a dull moment. A lot of frustrations. I appreciate my mom and dad so much. It does get manotness. But it is working and I am recovering...next day all over again. Never never quitting.

To Those People Who've Helped

Thank you so much. You have no idea what it means to me. This is unfamiliar and unchartered territory. Knowing you care helps both in my drive to heal and in my feelings of isolation along my pathway of recovery. I hope you continue to follow me and my blog. Thanks again-Brian.

What is cavernous malformation on the pons

Cavernous malformation on the pons also know as a traumatic brain injury

My Goal

My goal is to be able to walk and be normal. Do the things we all take for granted. I want to play with my daughter. I want to be able to see correctly so I may take pictures. I want to drive again.

My immediate goal is to regain my balance. I am getting better each week.

My Fears

My heart and lungs could fail at anytime. My fear of death is always at the door. I also fear that I always will be the way I am now. But I know deep down inside I am healing. That's what keeps me going.

My Character From Another Point Of View

I appreciate anything you might have to say both previous to and during this experience. Your comments are welcome.