Friday, December 12, 2008

stem cell research advances

for anyone interested in the medical advances for neurological disorders, Dr. Wise Young is the man to listen to. He is a neuroscientist working out of Rutgers University and is at the forefront of expediting a cure for spinal cord injuries here and abroad. In the last several years, doctors have proven for sure that neurological pathways can regenerate. So where are the therapies? Many injured people have been selfishly demanding a cure like spoiled children throwing tantrums at dept. store. The two biggest hurdles are funding and organizing clinical trial studies. Although we are in an economic recession, investing in clinical trials would save money for insurance companies AND be profitable for pharmaceutical companies. The other day, he announced on ( that he would post his articles on wordpress for consolidation and it is a wealth of knowledge. You can see it on He breaks down the economic, political and scientific barriers to developing therapies. He mentioned that if a days worth spent on th Iraq war were spent on research, therapies would progress. If a million people spent aa dollar a day toward a cure that would definitely progress therapies. So I began--30 dollars a month to the V.M. Keck Center at Rutgers University where Dr. Young works. Living in a nursing home, I've come to understand how important these therapies for neurological disoeders are going to be for most of us one day. So many people, old and young suffer from stroke, often paralyzing one half of their bodies. Neurological degenerative diseases like alzheimers and parkinson's are more prevalent. If you've never been in a nursing home, I would strongly suggest you visit one and take a glimpse of your probable future. I certainly didn't think I would be spending my late twenty's in a nursing I'm investing in the cure now. Dollar a day, to where Dr. Young works. I'm hoping to enlist other SCI comrades...

On a lighter note, I just got the new love and rockets stories from my secret santa!!! Tomorrow, I'm spreading christmas cheer by sharing my favorite cheesecake--S&Scheesecake from THE BRRONX!!-- with the third floor. HAPPY HOLIDAYS Y'ALL

Wednesday, October 22, 2008

one year post

One year post. I still feel very new. Some people may wonder what I was thinking that day I fell, October 11, 2007. I stayed over at a friend's house in Endicott and she drove me to ETM. I didn't want to go to work because it was raining that morning and
I didn't want to be on the roof. In fact, we all griped about being on the roof that day. Working on a pitched tin roof in the rain? Fuck no. But we couldn't complain. We were young and depended on this job. You can't "pussy" out. The head guy, Roger was in a rush to finish the job. We were still green, so it took a while to get our measurements right, drill right into the beams, and get the panels on straight. It really is tough to get spot on.

The worst came when Roger said it would be best if we didn't use our harnesses. He said we had to move quickly and they would just be in the way. I was working with Roger to finish the panels on one section of roof while Josh and Ed finished the rails on the other.

I remember at one point I was a ways from the panels and I found myself slipping quickly. It was so inevitable. I remember this so clearly. There was no point in screaming for help or trying to scramble back up the roof. Falling from a great height was my worst fear. I didn't want to remember falling. There wasn't time for me to think about my life. I was facing the roof when I slipped, feet first. I could see my feet approach the edge of the roof and the last thing I thought was, "Lord, take me." After so many years of not feeling close to God for so many reasons, there wasn't a time where I trusted God more. There is no way to explain it. Just like you can't explain why you love or why you need to create art or music.

The next things I remember are spotty and drug induced. I do remember the unpleasant feeling of the breathing tubes being inserted and hearing others being intubated as well. A lot of vomiting and suctioning was involved. It was excrutiating but I quickly learned it was necessary to breathe. I didn't understand my situation. All I knew was that I had tubes in my mouth and my hands weren't working right. I thought my body was just in shock from the fall and it would return to normal in a few days. I didn't realize my scull was screwed and fixed to a weight to keep straight and still. The only thing to do was learn the sights and sounds of the monitors; oxygen saturation, blood pressure, heart rate, dynamics of the ventilator.

I had dreams, hallucinations, relived some days and nights. I had some sick insights into the reality of healthcare that terrify me to this day. There are too many to tell, I'll leave that for another time. I just know that I do not want to be on a ventilator again and that even though I still have a trach, it's nothing compared to that. There is always something to be thankful for and always something to give. When I realized that I was still alive, I thought, "wait a minute God, this is not what I wanted!" Then I only fought to survive to see my mother another day. Later still, I thought, "what's the use of me now that my body doesn't work?" At Mount Sinai I determined that as long as I could breathe I better be good for something or somebody. We're here, right? might as well use our time well.

Tuesday, February 19, 2008

Bali hai is calling...

I did get a phone call from MGH gathering info for an appt! I’m excited and nervous. I know it’s just a start but I’ve come a long way. The online tracheal stenosis group has been very encouraging. Stenosis seems to effect mostly women, often times spontaneously, developing over years! It’s usually misdiagnosed as asthma until CT scan proves the stenosis. Voice recovery takes a lot of time and the stenosis may come back. But many are also success stories and I have sought and knocked and doors have opened.

I had to order another adapter for my computer, which is why I haven’t been online in a while. For some reason the adaptor couldn’t stay juicing and the battery would run down quickly. I put in the new battery and exchanged the adapter but the problem persisted. So I ordered a generic adapter and it’s been behaving. For several months, my father was rubberbanding and finagling all sorts of positions to keep that light on, but it was a sad state of affairs. I’d get flashbacks of him rigging our 13 inch, black and white TV with metal hangers and aluminum foil. Bless his heart. Our relationship has been going surprisingly well. He has exuded much patience and preparedness. He always has floss, and eyeglass cleaner. He’s not afraid to do anything and has let me flourish in my wheelchair skills. It’s because of him I’ve been able to travel as I have.

Yesterday, I went out with my mom to see South Pacific! We took access-a-ride and I had a good spot where I could get out if I needed to. The stage had a simple set up of maybe 3 or 4 scene locations. It’s about the taboo topic of Americans coming face to face with their fear of mixing with other races, in this case, people of the south pacific. Set in the time of WW2, it was very controversial and it took a while to get to the heart of the matter. It had all the cheesy romantic element of the time, which is not my thing, but the singing and energy was phenomenal. I’m hoping to post the soundtrack soon for those who want to listen. Afterwards, we had steak and it was a great way to end the evening. I had a good shower and went right to bed.