Tuesday, November 28, 2017

How My Fight Against MS Broke (and what happened next)

For 15 years, I have reached out to friends, family, and colleagues with one message: the fight is not over and it won’t be over until a cure is found.
My delivery of that message has morphed over time.
In 2003, I was strong and felt the need, “to show thanks for those who helped me along the way, to fight for those who can’t, and to ensure our next generation will never hear the words, ‘You have MS.’”
Slowly, my theme changed.
“Brie and I deal with the effects of MS every day.  Fortunately for me, the continuous treatments/aid/support that I have received since my diagnosis in 1999 have made the difference.  It is a fight.  The fight, however, is not over.  For me and for the 1,250 persons with MS living in Delaware it won’t be over until the cure is found.”
“My medical condition stabilized (to a point).  Though still somewhat debilitating, I am able to function day to day.  I am under constant treatment through the Veteran’s Administration healthcare system.  Through their treatment and support, I am ‘healthy’ today.  Physically, I am as stable as I can hope to be until we find a cure.”
My words documented a declining, but hopeful, fight as my MS progressed.
“It has been 11 years now since I first heard those words, ‘You have MS.’ Like many others, my course is a daily struggle with pain and damaging effects ever since the first onset of my disease.   I am able to fight back, though!  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!”
“My arms and hands are failing; my voice is weak; my days upright and mobile are fading.  My fight, however, remains strong.  A World Free of MS is still the vision.  The new cases of multiple sclerosis diagnosed daily remind us, we don’t yet have a cure.  The rapid worsening of my own disability is a reminder of the paramount challenges for all affected by MS.
“We will win this fight.  My goals still remain set on the recovery and rehab I’ll need to dance with my daughter, Eleanor, again.  If I don’t reach that target, I’ll continue fighting to ensure her generation never must hear the words, ‘YOU HAVE MS.’”

Each year, my tale of adversity and resilience had a strikingly haunting tone, one of familiarity. My progression, while unfortunate, is all too common in our MS community. I didn’t want to believe my course; sure I would be the exception that proves we are on the verge of defeating multiple sclerosis.
As summer wore on, and heat became a critical factor, the treasured motivational burst I normally experience before/during/right after Bike MS sputtered and stalled. Shortly after the ride, my condition worsened again. My leg weakened and my arm lost more function.
I grew restless from the seemingly futile efforts of generating motivation and fundraising for, what I began to see, a fictional future. Anxiety and depression kicked in without my realization, something I simply passed off as a byproduct of a highly stressful period in my life.
But, hey, that’s my specialty, right? I take pride in my ability to excel amidst such adversity.
This was too much. This has been going on for too long.
I Stopped
I stopped reaching out to fundraise, no longer focused on my fight to defeat MS. Instead, my energy switched towards higher priorities, repairing my personal life and focusing on my writing outside of the MS world. Unfortunately, I didn’t make any headway in either those areas. I wasn’t going anywhere; my fruitless efforts merely occupied time until a day would end. I started again when I woke the next day, right where I left off, still in limbo.
My depressed state may have snuck up on me, but it did not go by unnoticed. Documenting my dilemma in the Inconsequential Ramblings of a Condemned Man blog series was my attempt at a therapeutic confrontation of my fears. Coming face-to-face with, let’s call it what it is, this huge mountain of shit didn’t have the effect I had hoped for. I faced the complexities of my disease and finally realized they are not going away anytime soon.
I Quit
I didn’t have much of a reaction as my world slowly crumbled down around me. I didn’t hit the bottle; my drinking actually dropped significantly. I didn’t go out and further self-destruct my life. Instead, I didn’t do much of anything except hope for this to get better somehow. I was idly waiting for my Deus Ex Machina.** My anxieties and fears only heightened when I accepted the fact there is no salvation primed and ready to go. There are no more treatment options. A cure or effective treatment for me, if one exists yet, is still in the pipeline of research, discovery, development, manufacturing, or testing. My body and my mind must bear the burden of hanging on until our day comes.
This is where I spent the last several months, in a perpetual cycle of increasing debilitation, anxiety, and depression. My symptoms are worsening. It’s difficult to tell if my slide is medically induced or fed by my depression. It’s probably some combination of the two, but there’s no way to know for sure. Neither factor is going away anytime soon.

The fight is not over and it won’t be over until a cure is found.
It will never stop…nor will we
It will never quit…nor will we
This is why we fight!

As I watched this year’s fundraising season move towards a close, I sat by in amazement as the unthinkable played out over and over.
·         I stopped reaching out and fundraising, yet our friends and loved ones continued to provide incredible support. Over $60,500 came in. Together, we propelled Eleanor to the #1 fundraiser rank for 2017!
·         I stopped recruiting riders and building support for Team Amulet, yet another incredible array of friends, both old and new, rallied to ride and celebrate. Together, we raised over $84,700 as Team Amulet in 2017! Since our inception in 2003, Team Amulet has now reached an incredible milestone of over $633,000 raised!
Though I felt strangely alone, my friends, family, and loved ones rallied around our fight. Many found inspiration in my words. Eleanor and I were honored to speak and celebrate with the National MS Society – Kentucky/SE Indiana Chapter. We appeared in promotional videos for both the Oregon chapter as well as a national marketing campaign. Countless times over, I was praised for my great work and dedication. As my world continued to darken around me, I finally began to see the light so many others are generating in support of our fight.
I received a shocking reminder of something I had lost sight of long ago. The fight is not over and it won’t be over until a cure is found.
It will never stop. My body and mind will stumble. Times may come when I will break, hopefully to pick up and start again soon, but the collective WE will never stop.
It will never quit. While I face this gut-wrenching struggle to keep fighting and not give up, the collective WE will never quit. I am not alone in this fight.
I can’t even begin to express my love to all who helped carry me, even before I realized I was in need.
So now what?
That, my friends, is a question for which I would love to discover the answer! I don’t know. Even as I write this note, I’m trying to formulate an answer in my head.
My first step is to address some of the clutter clouding my mind and feeding my fears. Personal issues (divorce, moving, finances, etc.) do nothing but pound on a weakened body. Most issues are close to final resolution, for the time being. Maybe then I can assess what is real and what is my mind creating.
My next goal is to accept the fact I am a disabled man. Simply fighting to discount my adversities is pointless, they are here for the long haul and will probably worsen.
If you haven’t seen me in a year, my disability is far greater now.
If you haven’t seen me in a month, my disability is worse now.
You haven’t seen me in a week…
I need to learn how all of this affects my life from this day forward. There are no options when your body fails and functions are lost, you simply must learn a new way to live. That’s what I must do. My first blog is year was 45 Is the New 0. I didn’t realize how much worse everything would progress in such a short time, but I guess my commitment still stands true.
It starts today
Focus switches back to three priorities: my health, my mind, and My Little Love. Eliminating distractions, I’ll direct focus on my physical progression.
My attention will be both towards the rehabilitative and medical efforts I need to recommit as well as the logistical preparations for when my condition progresses beyond self-management.
Reducing the anxieties caught in my mind will surely be a welcomed remediation. I’ll take a break from outside distractions and focus on serenity. I’m looking forward to posting this blog, then immediately stepping away from my all-too-consuming social media distractions. I’ll get back to my writing, fantastic stories which have nothing to do with multiple sclerosis.
Finally, I’ll relish in renewed magic with My Little Love. Eleanor is finally at the age where the memories we make last a lifetime. If my body only has a short window of opportunity, those memories will be fantastic.

I don’t know how long my “sabbatical” will last, or what condition my body will be in when it ends. The fight against MS is surely not over, nor is my personal battle. Your continued support is definitely needed and immensely valued.
Most of you who know me already realize I don’t reach out very much, if at all. Writing is great because I get to share all my fears, concerns, joys, and imagination without having to open myself up at all (yes, I get the lunacy of my logic). I sincerely look forward to describing what this journey looks like when completed, and I prepare for the next adventure.
Until that day comes, please receive my sincere thanks for all the support you continue to give all of us fighting MS. We need every bit of it, and I apologize for not saying thank you enough.

The fight is not over and it won’t be over until a cure is found.
It will never stop…nor will we
It will never quit…nor will we
This is why we fight!

Never Stop… Never Quit…®
Kevin Byrne
Portland, OR

 Never Stop... Never Quit... Reg. U.S. Pat. & Tm. Off.

** Deus Ex Machina: The term has evolved to mean a plot device whereby a seemingly unsolvable problem is suddenly and abruptly resolved by the inspired and unexpected intervention of some new event, character, ability or object. Its function can be to resolve an otherwise irresolvable plot situation, to surprise the audience, to bring the tale to a happy ending, or act as a comedic device.