“Kevin, why do you fight? What’s the benefit you expect to
gain from all of this?”
I don’t think I have ever had someone directly asked me that
question. In the 14 years of riding and fundraising for the National Multiple
Sclerosis Society, my intentions have never come into question. To some people,
it must seem obvious: I fight to find a cure for my disease. To others, my
efforts seem to be more altruistic and charitable: I fight to help find a cure
someday, a cure for others. Many are proud of my determination and will to
fight, even as my strength declines and my body weakens. Although they see my
outcome as inevitable, the examples I work to set for others fighting
disabilities far exceed any medical benefit my work will provide.
Where does the truth lie? It’s nowhere in the middle, not some
water-downed answer that kind of meets all possibilities. My answer is simple
and extreme in every direction: I Fight to Win.
I fight for a cure
for me. There is nothing that I want more than to defeat my MS, a disease
which has already taken so much from me yet continues to chip away at my body,
my mind, and my soul. I want to take back everything I have lost. I want to
never go to bed at night in fear, reflecting upon what I lost that day and
wondering what piece of me will fade away tomorrow. I want to stumble upon the
magic cure, my own Deuce Ex Machina, and take away 17 years of pain and loss in
the blink of an eye.
That’s probably not
going to happen. If it does, it probably won’t be that instant solution I’m
fighting for. That’s no reason to give up, to stop fighting. Telling me I’m
going to lose only makes the fight harder. When I hear “probably not" all
I hear is “possibly could". As long as we possibly could, I will continue
to fight.
I fight to overcome
my disability. Every day, my MS worsens. Every day I stand up against that
beast and fight to take back some ground. I woke up yesterday morning bright
and early at 4:50, ready for another day of fighting. After dressing and
brushing my teeth, I grabbed my bag to head out to the gym, as I like to be ready
when the doors open. As I climbed into my car and lifted my left leg inside
before closing the door, I smiled. That was the first time in three weeks I was
able to pull my leg into the car unassisted. Most days, I have to grab my
unresponsive limb with both hands, then lift and pull it into the cramped
space. Not today. Monday morning, just after 5 o’clock, I logged my first
victory of the day. Fuck you, MS. I don’t want to give you any more of my life.
I want to overcome the pain you have already caused.
That victory is probably not going to happen often, at least
not as often as I want. My MS is going to continue to take; my disabilities are
going to continue to worsen. Constant rehabilitation efforts will help slow its
progression (hopefully). Adaptive technologies will help me continue to
function, by offsetting and compensating for my disabilities. I’ll use those
technologies. I’ll continue to work to slow its progression. But please be rest
assured, MS. I’m not satisfied just trying to compensate for my losses. I’m
always fighting to take back every inch of ground you’ve stolen from me.
I fight to end this
disease. The accomplishments made in the past few years far exceed anything
ever realized. The NMSS details
the 14 drugs currently approved for modifying the disease course of
relapsing remitting multiple sclerosis, as well as three main treatments for
managing relapses. There are scores of medications and medical devices
developed to aid in the managing current symptoms a patient may experience, in
addition to a litany of complementary & alternative medicines. That is
incredible but it’s simply not enough. It’s not enough for two reasons:
- First, there is no cure. FDA approved treatments, medications, and medical devices focus on trying to modify, slow, or manage the progression of MS. I want to find a cure; I want to end the disease.
- Second, treatments that work for one patient won’t work for another. Treatments for Relapsing-Remitting MS (RRMS) are simply ineffective when facing Secondary-Progressive MS (SPMS), Primary-Progressive MS (PPMS), or Progressive-Relapsing MS (PRMS). The four classifications are neither distinct nor consistent in their characteristics, varying from patient to patient and day to day. Even within classifications, treatments which may work for one patient can have minimal, zero, or even harmful effects on another. I myself have experienced five separate life-threatening reactions to “approved" medications. These treatments are crucial in the treatment of MS. They have saved countless lives in restored function to even more, but they’re not the final answer. I want to find the treatments that will overcome the devastating effects of multiple sclerosis.
Even as they say this (speaking through voice recognition
software to bypass the increasing disabilities in my fingers) there is no
inference of doing this for me. This is for everyone fighting this disease
today and every person tomorrow will have to hear those god-damn words “You
Have MS".
I fight to maintain
the will to fight. One of the scariest parts about my MS is that there are
so many people fighting alongside me, be it my peers or my army of caretakers,
yet I am so alone in this fight. It’s impossible to predict or even explain
what my MS is taking from me any given moment. Most times I can’t even form
those descriptions in my own mind. I can’t count how many times every day I sit
quietly, sigh softly, and wonder “Just how long can you keep doing this? Just
how bad will this get?" Those are the times I think of all my role models
standing before me and telling me to fight. So I fight. I fight to remind
myself that’s the only way I am going to experience joy, excitement, and
elation. I fight to demonstrate the will to fight, for my peers and army of
caretakers have the same doubts I hold close. I fight because I realize that’s
the only way I will win. There is no thought of doing this in spite of my pain
or to overcome my loss. Part of my fight is just to rattle my saber enough and
keep me in that fight.
There are many reasons why I fight. My MS has taken a lot
from me but my fight goes on because, one way or another, I will win.
The fight is not over and it won’t be over until a cure is found.
It will never stop…nor will we
It will never quit…nor will we
This is why we fight!
It will never stop…nor will we
It will never quit…nor will we
This is why we fight!
Never Stop… Never Quit…®
* Inspiration: Blondie, “One Way or Another”, Chrysalis
(US), 1978
For the full selection of Ellie's 2016 BikeMS mix, go to: https://open.spotify.com/user/22cq6yaewkxyysepfxm5pb7hy/playlist/0JxHvtzx2weHhcqVLagbOc
