Sunday, June 20, 2010

Sharing My MS with Others

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

Wednesday, June 2, 2010

Love, Confusion, Anger, Love...A Spouse's View of Multiple Sclerosis

Let me first say that I met Kevin after he was diagnosed with MS and so I went into this with my eyes wide open.  His sense of humour and zest for life overshadowed any challenges that I saw him struggling with because of this horrible disease; I probably delude myself that many of the physical challenges he deals with are just part of aging.  For instance, when he complains about minor problems with his vision, I just assume that he's been used to having the vision of an Army pilot his whole life.  Now, when he can't see perfectly, it's just because "his arms aren't long enough."  That may be true, or it may not, but it helps me not stress about the little things.
 
After we first met, I did a lot of research on this disease. At the time I worked for a major pharmaceutical company and had access to very current research on the disease, I also spoke with my father (a retired physician) to understand the medical lingo a bit more.  I ultimately decided that every relationship will have its ups and downs - at least I know what one of the "downs" will be!  Kevin is such a wonderful husband and I won't let MS take that away from me (it helps that he won't let MS take him down without a fight!).
 
That being said, there are challenges.  I'll never forget the phone call I received at my office about six months after we started dating.  "Can you meet me at the VA?  I can't see and my neurologist is able to fit me in."  I looked out the window and it was SNOWING!  Fortunately he made it there safely and the VA wrapped its collective arms around him and got things under control.  He takes it all in good stride and has a hearty chuckle about it.  At one point after another "hospital experience", Kevin had to use a walker for a couple weeks until his muscle strength came back.  I wasn't going to let that slow us down so we went to the farmers market and he sat in the middle and I filled up the walker's basket with all sorts of fresh produce.  I've never heard so many ladies whispering to their friends about how jealous they were of that walker and of a husband who would come with them to the farmers market!  We still have a good laugh about that afternoon.
 
Sure... there are times when MS is an unwelcome visitor who ruins our plans but we are determined not to let it take us down.  We've built a wonderful support network comprised of friends, family, the Veterans Administration, and the National MS Society, helps us take it in stride and keep us upright.  Now it's our turn to give back to all of them.