This isn’t working; you need a new plan.I truly pains me when I have a story to tell; a tale so profound that I’m sure will touch the hearts, minds, and emotions of my readers, but the words I need to form don’t make it onto the page. The little critic perched upon my shoulder won’t let me get away with more commonplace banter, a mere sequel to my last blog post… and the one before that… and the one before that…
My body is failing.
They know that already, Kevin.
My MS is worsening.
Again, they know that.
I wonder just how far my body will take me in this fight.
Your boring your readers, Kevin, and boring this little voice in your head.
I’m not sure how I’m supposed to write the toughest post I’ve created to date. Do I just come straight out and say it? Do I tell the world that my body is no longer able to stand up to the rigors of what I consider a normal life? I’m 44 years old, and for the second time in my life I am starting down the path of disability and retirement. What comes next is unknown. What my life looks like in a year (personally, my professional life, my healthcare, what I am able to do, where I’m able to go) will all radically change. Do I write how hard it is to remain positive when faced with the concept of losing all of the “things” I’ve used to define myself as a man?
That’s a start, Kevin. Why don’t you go with that?
The little voice in my head is normally my origin of inspiring words and ideas. When Voice tells me…I’ll just call him Voice. Giving him a real name might lend legitimacy to the fears I’m losing my mind as well as my body. When Voice tells me my words are stale and that a change is needed, a change is probably long overdue.
Yes, changes are long overdue. That simple statement summarizes my fight. My objectives remain the same: to cure my MS, to overcome my disability, to end this disease, to maintain the will to fight (in all of us). I don’t know any more if they are true objectives, or merely short-sighted goals.
The methods I’ve employed need to change as well. Accomplishments once deemed essential have been lost or compromised. The resources available to me today are vastly different from ones I’ve held onto for far too long. The bottom line is I’m fighting and running in the wrong directions. My tactics, how I employ my resources on the ground I’ve chosen as my battlefield, are wholly ineffective.
Just how dire is my situation? I’ve come face-to-face again with disability and retirement. My body is shutting down. More to the point, the left half my body is failing. Just a few years ago, I climbed mountains, biked long distances, and lived a productive life despite continuing to battle my MS. My condition now is a vicious cycle of cause and effect. I’m unable to move and exercise at a level necessary for maintenance of my body. The rippling effect of this reduction in use is atrophy up and down my left side, eroding my muscles and making simple tasks more difficult. The tasks I can do are all difficult. This weakened state further decreases how much I move and exercise, continuing the loop over and over. In just a few years, I have lost the symmetrical development of my frame. At this point, the losses are compounding exponentially.
This is relatively new to me; others have seen this for a while. Their devotion and support for me kept their concerns silent:
· “He’ll figure it out. He needs to get there on his own.”
· “I don’t know the best way forward. We’ll figure it out together.”
· “It’s sad to watch him struggle. I wish there was something I can do.”
· “Wow, I can’t even imagine.”
All those thoughts are real; all of those concerns are extremely valid. I’ve held every one of those thoughts, and so many more, watching all of my friends who fight this disease alongside me.
As I pull out my <proverbial> blank sheet of paper to begin the process of sketching what life looks like and where I want to be, I start at the end.
My Goal: what do I ultimately want?
My Strategies: what are the objectives I need to accomplish in order to meet my goal?
My Tactics: what are my current resources & constraints, how do I need to use them best, and how does that need to change?
What I Fight For? Why?
Through input and support from every channel in my life (family, friends, coworkers, doctors, therapists, clergy, and so on) I have been able to vision my goal in all of this: I want to be happy. Regardless of the course in my life, I want to be happy. I want to feel satisfaction over the efforts I expend and reap the bounties which fall upon me; I want to continually reinforce the goal to make me happy.
That’s good, Kevin.
Your goal is to be happy.
What makes you happy?
There are countless things that make me happy in my life, or could make me happy if realized. Conversely, there are countless tenets which can or do take away my happiness. I’ll keep this rant short, only focusing on how I can find happiness in this world of multiple sclerosis. I’ll take this verbatim from my earlier statement. My objectives remain the same: to cure my MS, to overcome my disability, to end this disease, to maintain the will to fight (in all of us). Those are the objectives, the strategies, I need to achieve in order to find happiness. My focus remains on all objectives. The timing of their individual successes, however, will vary as much as the levels I will finally realize in each.
That’s good, Kevin.
Expand on that more.
This point right here is where I battle myself every day. How much success is enough? How many victories, how much ground gained, in this fight against MS will make me happy? Is holding off decay, delaying the inevitable, enough? The reminder I must share and convince myself every day is that nothing but absolute success in each and every one of my objectives will ever be enough. The reminder I must share and convince myself every day is that every victory, every ground gained, will make me happy.
This brings me back to tactics. What resources do I have available to me? What do I need to focus on, to exploit my strengths, reinforce my weaknesses and compensate for that which I have lost? What additional resources are out there already? What else is under development? What is already lost?
Today is Day #1.
Everything I have done up to this point has prepared me for this next phase in my life. I know what I want to do. I need to figure out how to do it.
Disability is only a small piece of my puzzle. For the countless time I look to the future, to start my life anew. I’ve got a leg up on this round, however. With so many in my life supporting, assisting, and carrying me, I start this round with so much more clarity than ever before. With my objectives in mind, I’ll hone my tactics and employ the necessary resources to achieve them.
There’s one thing I am sure of. My Voice will be different. I will find my Voice, and I will use it to find my fight.
I’ve still got a lot of fight left in me.
Go get ‘em, Kevin!
My heartfelt thanks goes out to Eleanor, the inspiration for that little Voice in my head: https://youtu.be/3RHbNjwUTeQ
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…®
* Inspiration: Rachel Platten - Fight Song, Columbia Records, 2014
For the full selection of Ellie's 2016 BikeMS mix, go to: https://open.spotify.com/user/22cq6yaewkxyysepfxm5pb7hy/playlist/0JxHvtzx2weHhcqVLagbOc