I felt a sense of peace come over me when we pulled up the scenic driveway to the Helen Hayes therapy center. It was very similar to the feeling I had on the first day I arrived for admission back in October of 2010. As I laid helplessly strapped to a gurney in the ambulance that day, I vividly remember thinking to myself, "this will be the place to help me get my life back!" 3 years later, I was in MUCH better condition and headed for the outpatient department. There is something almost magical about Helen Hayes that inspires a wonderful sense of HOPE! "Welcome"signs with words of encouragement, and colorful flowers in full bloom littered the walkway as my Uncle Carlos and I made our way over to the building. He always parks in the furthest spot just to give me the "extra workout". He claims it's his way of "keeping me from becoming too lazy," haha. The grass looked as if a luscious green carpet had been rolled out onto the ground with a beautiful view of the Hudson as its backdrop. Over the years, it has become quite clear to me that exercise is a key element in maintaining my fast paced lifestyle and so I was excited to jump back into therapy on that beautiful sunny afternoon. It had been nearly 6 months since my last formal physical therapy session at the hospital, and my body was clearly able to tell the difference. Walking long distances had become somewhat of a challenge and my shoulder muscles would practically shut down when trying to carry large objects. Physical issues such as these have a way of messing with my head, and often leave me feeling somewhat inadequate and insecure as a man. It has taken time getting comfortable with the idea of allowing others to "help me" only because I don't like depending on people, it's just not in my nature. Those same feelings however are what drive me to push myself beyond my limits and go "the extra mile". However, I must admit I have a bad habit of getting comfortable and relaxed once my body is stronger and "normal". So much so in my case that it is often to my detriment. I often forget that my disease requires a constant, dedicated, and life long commitment. but the truth is sometimes I just want a break from it all. Most people stop working out and gain a few pounds, while I on the other hand rapidly lose function of my vital muscle groups. In this situation however, physical & speech therapy were suspended due to insurance issues. Being that my condition is so rare, it does not fit any particular mold as far as insurance companies are concerned and therefore payments are made primarily at their own discretion. During this time off, my mother and I worked hard with an attorney to sign up for the necessary programs that could potentially secure me another year or two of training. In the meantime, my mother worked hard to pay out of pocket twice a week for in home personal training. I don't know where I'd be today if not for that woman! In the end, persistence truly paid off and a huge smile came across my face as the receptionist confirmed that I had been approved for 40 more visits. This was precisely the kind of boost I needed to rebuild a better quality of life for myself. I have big plans for my future and the only way to accomplish them is to focus on taking care of MYSELF before all else.
I will be turning 30 next week. On its own, this is a HUGE life accomplishment for me being that 24 years ago doctors sat across from my parents with predictions that I would not live past my 7th birthday. With this substantial milestone in my life rapidly approaching I have spent a great deal of time reflecting. I am now more than ever fully aware of the people and things I hold most dear in this world and therefore DO NOT waste any time in giving them my full attention. I am not stingy with my compliments, and I tell people how much they mean to me on a regular basis. I cry a lot, and not because I'm an emotional wreck but because I am so in touch with the fact that nothing in this world lasts forever causing me to cherish every moment. It doesnt hurt that I'm a cancer and overly sensitive by default. I have been putting in a lot of work on my autobiography and have successfully made some substantial headway over the months. I have come to realize that in order to take my life mission to the next level I need to tell people my ENTIRE story from start to present. I want people to understand who I am before I attempt to take on the responsibility of making positive changes in the world around me! I believe I can have more of an impact that way, and further provide motivational and inspirational help to most of the people I come in contact with. This process has been extremely therapeutic for me and has allowed me to deal with many of my own internal life struggles and demons. It has allowed me to process information in a healthier way and release any anger or negative energy that I may be holding on to. I've spent many late hours contemplating the discussion of personal and private information with my audience. I want to be honest with my readers in order to connect with them in a deep way and so I make a conscious effort NOT to hold back in my writing. Not everyone will agree or like what I have to say but that is a reality that I am all too prepared to deal with. People will judge me for my mistakes but I will take full responsibility because at least it will be MY TRUTH! Part of my "enlightenment" comes from the very concept that my life is my own and how I live it is no one's choice but my own. Hopefully this approach will allow me to gain a certain level of trust, so that my story may be able to benefit people on a substantial level. Another passion of mine has always been music and event planning, and so I recently started a record label company with my two cousins Bambu Bonds, and Mo' Bandz. We are currently an independent company that is on the road to creating great music and entertainment on a grand scale. Most of my energy comes from deep within my soul, a place where NO DISEASE can touch. Music allows me to tap into my creative outlet and free my mind of all its worries. I love to show people a good time and provide them with a similar escape from everyday life stressors. This entire process thus far has brought my cousins and I closer as family and for that reason alone I am forever grateful, and will continue to follow this path wherever it may lead. In the end, there is NOTHING in this world like FAMILY! The dreams we have are powerful ones, and we fully INTEND to make them a reality.
This roller coaster ride I call "life" certainly has its share of dips and flips. There are so many times that I get lost in my own thoughts while over analyzing my many limitations. My mind wonders about finding the perfect partner and the possibility of raising children one day. "Who will want to put up with my constant medical visits and medical equipment?" "Will I ever run through the park with my toddler?" After everything that I've been through, I have grown quite accustomed to the fact that intense paranoia is just another issue I need to constantly work through. Fortunately, I've nearly mastered the techniques of talking myself back to a place of security and comfort. I find it harder now more than ever to accept my situation because I have lost the ability to do things that were once effortless for me. Although I do my best to remind myself that "things could always be worse" and try never to take my blessings for granted, I am also very realistic in thinking that things could always be better as well. It is that second part however, that fuels my desire to push myself to the limit in order to achieve my goals. Strength and positivity are not words that can simply be spoken and then suddenly feel uplifted. One has to work for it! Pulling myself out of my bed and "cave" is sometimes one of the hardest parts of my day. And not because I'm tired but because I THINK about the extra effort that is required for me to carry out a peaceful normal day. Before even stepping out of bed, I have to disconnect from a ventilator which in and of itself is a process. Due to the fact that I have grown so accustomed to wearing leg braces for the last 3 years my ability to walk without them is significantly impaired. Anger and frustration start to come over me as I realize something as "involuntary" as breathing has become a daily chore for me to survive. These days its a constant struggle to focus on the good things when we are constantly bombarded by the negative energy that is polluting our environment. However, then there are times that I sit outside my home around the fire on a beautiful summer evening with my family and closest friends and it hits me as to just how LUCKY I am: The voice of my 4 year old niece telling me, "I Love You Uncle Christophe!" and there was no "running" necessary for her to say that, haha! Inside jokes with my sister, deep conversations with my brothers, dinner dates planned by my sister-in-law, words of wisdom from my one of a kind uncle, trips, movie nights, bar hopping, and just laughing with friends, and the intense love and support from ALL OF YOU.......all of this just to say, my life is by no means easy, but I can whole heartedly say it is MOST DEFINITELY WORTH IT!!
*THANK YOU to my loved ones for going on 30 Years of some of the MOST INCREDIBLE MEMORIES ONE PERSON CAN EXPERIENCE!!! Many more to come.....
and to my donors: your memory will live on in my words perminently, in my writing indefinitely, and in my heart forever... I LOVE YOU!