Usually I deal with my MS every day in much the same way as I have for the last 14 years. Resilience, determination, challenges, strength. Those are the words that usually describe my fight. I understand the reality of MS, but I often don’t feel that those difficult realities apply to me. Or at least not for long as I usually quickly overcome them. When I send out my annual fundraising letter for MS, my focus has usually been support for others.
It has been 14 years now since I first heard those words "You have MS". Like many others, my course is a daily struggle with pain and damaging effects ever since the first onset of my disease. I am able to fight back, though! Through the amazing medical treatment that I receive from my doctors at the Veterans Affairs Hospital, my body is strong. Through the constant love and guidance from my friends and family, I have been able to maintain my daily life. All the time, the support from advocacy groups like the NMSS have kept me prepared for today and whatever may happen next!
Now, Brie and I are focused on giving back and fighting for those who have helped so many.
That sounds nice. A nice story of strength and determination, overcoming the odds and rising to pay it forward.
That sounds nice but it’s not real anymore. My MS is now pulling me back into reality, and today I see more reality than I have ever confronted before.
I am faced with some simple facts.
I am disabled and that disability is worsening. In the past, I would usually get by without “looking disabled”, for whatever that is worth. That’s not the case today. The peaks and valleys are extreme. On good days I can walk and talk with relative normalcy. On bad days I can’t. Brushing my teeth or getting out of a bath tub can become impossible tasks. My slurring can be so bad I sound drunk at 10 in the morning. My legs or arms will just stop working. Those peaks and valleys can hit 5, 10, 15 times in a single day! It can be exhausting to manage my limitations through prediction, preparing my surroundings and explaining to others those awkward moments.
My medical treatment options have been nearly exhausted. My body has rejected most active treatments to treat my MS and limit its progression. I am on one remaining treatment currently on the market; the rest have led me to infections in my leg, kidneys, bladder, and spine as well as bouts of anaphylactic shock and meningitis. Steroids no longer recover the increasing incremental damage done to my body.
This isn’t going away anytime soon, if ever. It’s early April. Normally I am starting my training cycle for the annual National MS Society BikeMS. My focus is normally “how far can I push my body this year?” This year my focus is on successfully walking, raising a glass to my lips, or picking my 3-year old daughter up. I haven’t even started to grasp the issue of whether I can ride my trike, let alone how far.
I am faced with simple facts. What comes next is neither easy nor clear. How I move on from here will define everything that I am.
My life has been numb for the past several months, waiting for the resolution of “What’s Next?”
The reality is that this IS what’s next. My next challenge to display resilience, determination, and strength. My fight is still the same; my message just needs to face reality.
A World Free of MS is still the vision but we’re nowhere close.
New cases of multiple sclerosis that are diagnosed daily remind us that we don’t yet have a cure.
The worsening of my own disability reminds me that challenges for those affected by MS are still there.
Not yet, but we will get there.
It will never stop….nor will we
It will never quit….nor will we
This is why we ride
I wonder how far can I push my body this year.
Kevin Byrne - Portland, OR