Wishing you ALL a very safe and happy day Labor Day weekend with family and close friends!
Tuesday, August 28, 2012
As the summer rapidly comes to a close, I can't help but sit and reflect on all the wonderful moments that were shared with my incredible family and friends. Just before memorial day, I was told the devastating news that ALL research and therapy supporting my condition has been abandoned. For the first time in my life, I had no choice but to face the fact, that the remainder of my existence is going to be a constant battle. My disease is progressive, and without a cure that only means things will continue to get worse. I sometimes worry about losing total function of my legs, or worse my neck and/or bladder. I worry about living my life confined to a bed relying on people to change both my TV channel and diaper bag. My hope is that people acknowledge my bravery while still remembering my fears and frustrations are very real to me. As the days go by, I notice a gradual decrease in my strength. I am working hard to maintain good nutritional habits. Constant physical therapy combined with daily stretching, help me to make improvements where I can. However, I have come to terms with the that fact that certain things aren't going to change. My friends wouldn't know it, but its still hard for me to even identify as handicapped. Somehow society has brainwashed me into fearing such a label. I believe it is largely because social networks have given me the displeasing privilege of seeing just how cruel some people can be. Images of people living with unfortunate illnesses and deformities are turned into complete and total mockery. Nowadays its not easy to have faith in this world. I sat in a 4x4 office with my mother, as "the guru" of neurology essentially shut out the light at the end of my proverbial tunnel. As difficult as this news was to grasp, I have come way too far in the game to admit defeat now. And I am here simply to spread that energy. I want to inspire hope in a world that is so quick to break you down! Thankfully I am surrounded by the most supportive and uplifting of people. My great friend Mark and I, made a promise that we would take full advantage of ANY and ALL opportunities that came our way this summer. And boy did we ever! Kicking things off with an impromptu trip to Miami, I can honestly say we certainly exceeded even our own expectations. The weeks were full of celebrating graduations, weddings, birthdays, road trips down the shore, gambling in Atlantic City, boat rides and clubbing in NYC, bar hopping, dinners, barbecues, swimming, house parties, breakups, makeups, and everything in between. Laughter was my number one objective and I made sure not to take anything too seriously. I ended every day extremely thankful to God for the many blessing I DO have despite my adversities. Two years ago, my brother Claude and I exchanged a tearful embrace celebrating his 25th birthday in an ICU bedroom, my health still undetermined at the time and hanging in the balance. Worrying that my little niece would be scared of me now being the "creepy man with a tube in his neck". And to think this summer I was able to hear my niece call me "Uncle" as she splashed around in the pool. I was able to stand tall next to my brother as his beautiful new wife made a birthday toast in his honor. I was surrounded by nothing but LOVE for the last 3 months and I truly believe it has added years to my life! I received an out pouring of support from various readers, and it has undoubtedly motivated me to push forward with working on my autobiography. With only TWO emergency trach changes, and a hair line fracture in my rib from taking a nasty fall in Atlantic City, i am quite proud to say this is one of the first summers that I've spent more time OUT of the hospital than IN! By now most of you know, my life is clearly not always fun and games. I face difficult challenges on a daily basis. Its not always so easy to push through the struggles, however I have truly learned that having a positive outlook can make all the difference in the world!