My diagnosis of Multiple Sclerosis came while I was serving
in Korea, commanding an air cavalry troop (D/1-6 Cav). I remained in-country for several months,
using the time to prepare for when I would come back to the US and have to
start my life beyond the Army. I spoke
with a recruiter several times who helped me begin the job search and
transition into this new life. His first
point of guidance to me, and my biggest takeaway to share with you, was to
become familiar with ADA (the Americans with Disabilities Act) and my rights as
a disabled veteran. For me though,
sharing my MS with others goes so far beyond my rights; it’s my pride and fears
that are the toughest issues!
I guess I am one of the lucky ones (?) who usually ‘doesn’t
look like he has MS’. I have been told
that before, though I’m not sure what that really means. What I do know is that I spend a lot of time
managing the appearance of my disease. How
do others see my MS? That is my focus
because how others see my MS is how they see me. There is always that battle within me; the
fight between avoiding the stigma I don’t deserve while at the same time
getting the support and understanding that I need. I hope that I am doing it right.
Hi, my name is Kevin
and I have Multiple Sclerosis
I don’t try to keep my disease a close secret but I try to
control when I tell employers, colleagues and friends. Sometimes it is the only part about my MS
that I feel I can control. In the
perfect scenario, I use my MS to my advantage.
I like to show others that I am capable, successful and strong, and
then let them know in a matter-of-fact way that I have MS. I love when I can change a person’s
misconceptions about what a disabled person can and cannot do!
“If that’s the case, then
why tell them about your MS at all?”
The simple fact is that I do have this disease and it will
affect me. Sometimes I know, or can
predict, what those effects will be, more often than not it’s just random. There are times when I need that extra support,
help or understanding. If people around
me don’t know about my MS they might not be able to provide me what I
need. I normally ‘don’t look like I have
MS,’ but my right side doesn’t ever really work. I often can’t grab things that are handed to
me. Other times if I am holding on to something,
I can’t let it go. That can make for an
awkward moment of silence when I am shaking someone’s hand! There are the occasions when I can’t get up
from a chair, or I lose control or my hand and throw or drop whatever I am
holding. It’s easier for me if others
know the reason. I have found that when
those around me understand, they are more likely to help then to turn and walk
away.
My other reason to talk about my MS is a bit more
selfish. I want to use my disease to
help generate support and to educate others!
As a fundraiser for the National MS Society’s Bike MS, I use my MS as a
personal appeal to others. I figure that
talking about my MS and its effect is a great way to solicit donations and
support for the organization. I talk
about my challenges and the ways that the VA and the NMSS have supported
me. It has become my mantra. Here is an excerpt:
It has been 11 years now since I
first heard those words "You have MS"; a young captain in command
overseas when my life instantly changed.
Like many others, my course has been a daily struggle with pain and
damaging effects ever since the first onset of my disease. I am able to fight back! 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!
It is a fight. For approximately
400,000 people with MS in the US and 2.5 million worldwide, the fight is not
over and it won't be over until the cure is found.
It
will never stop….nor will we
It
will never quit….nor will we
This
is why we ride.
Please
support our fight!
Lie about MS? Sort of…
Sometimes I am just not ready to come clean about my MS or
what it does to my body. I have a few
standby excuses that I keep available just in case I need them. My favorite?
I like to ride bikes so when I showed up to work a few years ago on
crutches and in a soft cast it was easier to blame a bike crash than the truth
about my legs just giving while walking down the stairs. That one has come up at again other times; like
when I did a face plant down a carpeted flight of stairs; how else do you
describe rug burn across your whole face?
I don’t like when I have to tell others I am that vulnerable. I have MS and I want to be in control of how
my disease is managed!
Sometimes, my MS reminds me that’s just not the case at all… Those are the times I fear: when I have no
control over my disease, who knows or how they find out. I am helpless in the face of the opinions and
reaction of others. My last battle with
that was in early 2009 when I started my current job. It was a dream job as a Sourcing Manager with
Iberdrola Renewables, a renewable energy company based here in Portland. I showed up Week #1 ready to again
demonstrate myself as capable, successful and strong. I showed up Week #2 with an eye patch because
I was losing my right vision again.
Weakened by steroids, I had to come clean about my MS much earlier than
I wanted to…and not on my terms. Halfway
through my jumbled explanation of my MS, why I didn’t mention it before and
what to expect, my director cut me off:
“Don’t worry about it. Tell me
whatever you need; now about that contract you’re working on….” My fears set aside; I was able to focus on
reality instead of worries about impressions.
After 11 years I am still learning that fate, fortune, and
circumstance can’t compete with the support provided by positive employers,
colleagues, and friends! For that maybe
I am a lucky one!
Kevin Byrne - Portland,
OR
