I received
an email today, a message from the National MS Society. The subject was clearly stated: Tell us why you want to end MS, Kevin.
It’s a
petition but there’s not a clear political, financial, or social campaign
associated with the question. The goal
of Katharine George (National Sr. Director, Database Marketing) is to “rally
the MS community and together we can build on the momentum of recent promising
research projects and do more to help everyone with MS better navigate the
challenges of life with this disease.”
I’m not one
to randomly click on links, but I know the source and it’s legit. Besides, I’m kind of curious to know what she’s
really asking for. So, OK, I’ll
bite. I visit the site: (https://secure3.convio.net/nmss/site/SPageServer/?pagename=HOM_FY15_10_oct_survey&s_src=DHODI151042WEB).
Clustered on
the page is one line that stirs my response:
- Tell us why ending MS is important to you
***********
Why do I
want to end MS?
Because my MS will not stop its attack on
my body
It has been
15 years since I was first told “you have MS.”
In a flash, I lost most of the focus in my life at the time. I was as a 27-year old Army Captain, an AH-64
Apache pilot serving overseas as an Air Cavalry troop commander, living the
life that I always dreamed about. Then I
wasn’t. I became a 28-year old patient
at Walter Reed Army Medical Center in D.C., learning to live with vision
issues, pain, mobility challenges, and the psychological damage of facing the
rest of my life in a chronic state of disability.
I recovered;
not everything but I recovered a lot. I
built a new life for myself, both personally and professionally. I comfortably managed my MS. Though MS symptoms and treatments were always
a part of my life, I was still able to manage.
I began to focus on giving back to the MS Society; riding to raise money
and awareness for those who helped me through my dark days. With amazing personal adventures and
fulfillment, exciting domestic and international assignments, I was living the
new life I was now dreaming about. That
didn’t last long. By the time I was 32 I
had lost everything again and was faced with increasing physical and emotional
damage.
My family
and friends bore a heavier burden with me this time, more than they deserved,
but again I recovered much of what I lost.
I regained my strength, fell in love with an amazing woman, and built a
new life that is stronger than all of my old dreams combined! Together, we thrive, fight, fail, suffer,
recover some, then create more. I don’t
lose everything anymore, because Brie is there to share that burden and help me
recover…time and time again.
- We lived, loved, and married. At 35-years old my next battle nearly cost me my life.
- We recovered and thrived… I climbed mountains… and we welcomed our daughter into our lives. At 39, 40, and 41-year old we battled infections, medication reactions, and further debilitation from the progression of my disease.
Through this
all, Brie and I remain focused on fundraising, advocacy, and awareness. Somehow, we consider ourselves lucky. We know that it can get worse.
We need to
do something before it does.
***********
Why do I
want to end MS?
Because my MS is not unusual
Every person’s
MS is unique. The daily struggles of my
MS are nothing like those experienced by the hundreds of close friend with whom
I share those letters with….MS. Every
struggle is vastly different, yet we all understand the bond we share. We understand their setbacks and pray for
them when we’ve been in ‘that place’; we admire their strength when they show
us how handle the challenges faced; we look on in fear as they battle through something
we haven’t dealt with…yet.
The first 15
years of my MS was more severe than it is for some, a breeze compared to
others, yet most often quite similar to most.
My progression is, in many cases, a mirror image of the ‘statistical
average’. That scares the hell out of me
since I am familiar with the average progression of MS. On the other hand, that puts me right in the
spotlight of cases to consider for treatment and candidates for success when we
do find the answer!
***********
Why do I
want to end MS?
Because MS is hurting my family and friends
Brie and Eleanor
suffer from my MS every day. One came
into this willingly, yet she knew me for a time as an active husband. The other is the picture of innocence, who doesn’t
even know what it is like to have a healthy daddy. For both, every change in me brings with it
an additional burden on them. They watch
as my MS takes me from them.
All too
often, my MS becomes the issue and focus that others have to deal with. My family and my friends care for me, provide
the assistance I need to carry my through the difficult times, celebrate me
when I see success, and advocate/fundraise/support me in my fight. When there is cause to celebrate, they are
joyous for my success, yet during the hard times they share in my burden and
take all too much on their shoulder.
I let them
all do this, for I can’t do it alone.
One
question:
Why do I want to end MS?
Three reasons:
Because my MS will not stop its attack on
my body
Because my MS is not unusual
Because MS is hurting my family and friends
It will never stop…nor will we
It will never quit…nor will we
This is why we fight!
Kevin Byrne - Portland, OR