Gang, I apologize
if my recent writing has lacked its typical carefree effervescence and
squish-MS-like-a-bug attitude. Gains from my 2010 stem cell transplant to
halt my aggressive multiple sclerosis are slipping. Walking
endurance has waned and numbness has lurched back into my limbs like
unwelcome zombies (not that zombies are ever welcome). For those of you
who read between the blurry lines over the past months and wrote to check
in on me, I deeply appreciate those offers of a
shoulder.
The transplant saved my life–I was, and still am, beyond
fortunate. For four years it helped me feel almost normal again. And I
purposefully took every advantage, living life with my right foot firmly on
the accelerator, figuratively and literally. It allowed me to
drive again, travel the world again, and even snowboard
again. But I knew that I might have to pen this letter to all of you one
day.
There are no regrets. Even though today I am walking
noticeably slower than I was a year ago, I
am still walking. Even though my numbness has
increased, I can still feel. Indeed, I’m still far above
baseline, when I had to sit to brush my teeth, struggled to pick up a
pint of IPA, and had to ask Laura to clip my nails and
button my shirt and drive me everywhere.
I urge you not to be disappointed. The transplant was a
success for a majority of the trial participants and me: no relapses, no new
or enhancing lesions, and a reversal of some disability. If I go back on
treatment, so be it. A stumble in medical science is never a
step backward, it is a stubborn shuffle forward. It gets
us a little closer to finding that maddeningly elusive cure for our
shared disease. Indeed, the future is squinty bright in MS
research. (Speaking of which, have you done your part and registered
with the patient database iConquerMS? Consider this
a friendly reminder.)
I am committed to keep dreaming big dreams and reaching for
those stars. Please join me. And I don’t want to hear any guff
about how stars are just massive, luminous spheres of plasma held
together by their own gravity and can have temperatures exceeding 50,000
degrees Kelvin, which would be rather detrimental because of MS
heat sensitivity and all. Bah, turn on the AC or put on a cooling vest
and get on with it. We have to keep reaching. We’ll get there. I am
certain of it.
For me, it’s time to research and potentially prepare for a Plan F–or
more specifically, attempt number six–to slow down this disease. I don’t yet
know what route I’ll take, or if I’ll hold to the status quo for the
time being, but I do know that quitting is not an option. I’ll exhaust
the alphabet if I have to.
Life will forever throw challenges our way, testing our mettle, our
fortitude, our resoluteness to persevere. That’s just life… life
with or without MS. It is how we absorb those challenges–not just physically,
but mentally–that reroute our destinies. Never forget, hope still reigns.
Tomorrow I celebrate an unforgettable 22 years of being married to Laura.
She’s my anchor, and I am hers. Always have been. Always will be.
I’ve posted a more detailed update of my
experience on the forum so this note
can reach beyond those who get our newsletter. Be active, stay fit, and
keep exploring. I sure as hell intend to!
Written by Dave Bexfield