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
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