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!
