Monday, June 9, 2014

I didn’t know how to be disabled

There’s a unique sense of pride when you encounter someone with whom you share a bond.  It’s like that subtle gesture you give and receive as you ride past another motorcycle.  A relaxed wave, with your arm hanging down, that told the whole story:
Nice bike!
Enjoy your ride, I’m enjoying mine!

Every bond has that special greeting, that acknowledgement to the other that you “get it” and share the same passion.  You compare your cars, sports, computers, or whatever other interests you may share.  Sometimes you ask questions to size up the competition or maybe just revel in the jealousy of others (or end up simmering in your own jealousy). 

There are other times when just a wave won’t do and you simply must tell stories.   I love to tell stories.  Whether it’s with other helicopter pilots or displaced New Yorkers, I rarely pass up an opportunity to tell stores. 

My MS world is no different.  I like to tell stories.  I like to talk about my challenges and overcoming the odds.  I always relate to the big victory.   The other day, my camaraderie was displayed while hobbling past a man close to my age.  The arm gripping his cane told the whole story:
Nice cane!

It was a nicer model than my cane.  I involuntarily acknowledged him but quickly pulled back; it just felt uncomfortable.  Do you recognize or acknowledge someone else’s disability?  I don’t know.

The first 14 years of my fight with MS were relatively easy.  Either I didn't “look disabled” or, if I did at the time, l was sick or injured.  Sick or injured, at least to me, implies a temporary state.  I was sick, but I was in the hospital or on medications; I would get better.  I was injured, but my leg was in a temporary cast or I wore an eye patch for a while: I would get better.  I often separated myself from the “disabled” term and the focus (with stories and MS fundraising) was on overcoming the effects of my MS and paying everyone’s support forward.  In my 15th year of fighting the hardest thing for me to lose ended up being punctuation.  Without the comfort of hiding behind quotation marks, I am finally working on learning what it means to be disabled.

Last month I was featured on a local news channel’s health report (KPTV, Fox 12 Oregon).  It was an informative piece about the clinical trial I am participating in.  It’s for patients with Secondary Progressive MS.  I received nothing but accolades from everyone (friends, family, even strangers who recognized me!) but when I saw that video clip I didn't see any reason to be happy.  What I saw was a body that was breaking down.  Tell-tale signs of limping, slurring, and stumbling were not starting to become visible, they were on display.  My concern was that everyone was going to see the clip and think I’m like that all the time.

Over the course of the next few weeks, my condition worsened.  I could feel myself degrading daily; I could almost mark the changes from one day to the next.  Secondary Progressive MS is when the disease will begin to progress more steadily without any specific noted relapses.  No breaks, just continual decline.  “This is it” was my only logical conclusion as I witnessed that decline first hand.  There are a lot of things that go through your mind when you experience what you see as a pre-cursor to your own demise.  All of the facts you know about MS, and every example of the progression you have seen in the past, lead to the same grim outcome.  I was no different after all.  I was becoming part of the group with others who show their disabilities.

I finally stopped separating myself from the disabled term and started sharing my developing disabilities with others.  Only then did I finally understand my disease.  That was the point I started to listen to others, to realize their reactions to and interactions with me, and to see what everyone else around me has seen for quite some time.  My MS had not progressed or worsened in quite some time.  My symptoms have been this way for months, much longer in some cases.  The occasional comment of “you look like you are doing a lot better than the last time I saw you” was finally taken as a compliment, encouragement rather than pity.  There was no rapid degradation; all of those new symptoms were just a sudden onset of realization on my part. 

With my impressions reset, my health improved.  My energy level seemed to be restored, my workouts improved, and my mind was again at ease.  I no longer have to question myself as to what I’ll do if/when I become disabled, no more concerns about how I will handle that.  Apparently, I have been disabled for quite some time.  Go figure. 

I am disabled.  I’m more comfortable with that now.  This realization changes nothing externally, but my comfort level changes every image of where I am and understanding of what I need to do.  All my MS friends can translate this (comfort level = reduced stress = better days overall).

I’m still not quite sure what the proper greeting or protocol is when I pass another with whom I share this bond.  I suspect that time will help me understand the best thing to do.  Before I understood the subtle arm-hang when passing a fellow biker, I had to learn to ride.  Only then did I receive the greeting.  Eventually I learned to respond in-kind, later initiating the greeting and teaching the next generation of bikers the proper arm-hang.

There is a lot for me to learn and be comfortable with.  For now, I will have to stick with “nice cane!”

Kevin Byrne - Portland, OR

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