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:
‘sup
Nice
bike!
Thanks!
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:
‘sup
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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