Tuesday, August 30, 2016

Bike MS 2016 - One Way or Another

“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!

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

 Never Stop... Never Quit... Reg. U.S. Pat. & Tm. Off.

1 comment:

  1. SO glad to stumble onto this blog. Thanks for all you do for the MS cause. Keep fighting!

    Linda - Kicking MS to the Curb