adventure, agony, holy grail, Hope, journaling, MS, NYC Marathon, puzzle pieces, reasonable accommodation, recumbent trike, S 150, training wheels, Virgo, writing
(I’d put one of those handy little links in here that would jump you effortlessly back to Parts I & II if I knew how to do that. I don’t. Yet. But I figure if this story is something you want to read more of you’ll find the wherewithal to track a few posts back to find the previous sections. I have the greatest confidence in you, and thank you for your patience with my lack of skill in blog technology finagling.)
The reason I say that writing is harder than living with MS has—in greatest part—to do with the fact that writing is a choice, whereas going about my life with multiple sclerosis is not. Writing is filled with discovery, analysis, and a kind of begrudging but passionate self-archeology. Writing requires a willingness to adventure back to the past with the benefit of time, experience and perspective. To write about yourself is to be swimming in memories, surrounded by the people and places of your past. Even when you’re writing about the present and imagining the future, the process is tied to all of your previous experiences and relationships. At the very heart of it, I believe we’re always writing about, or from, our pasts. Which is partly, but not all, of why I deem writing to be such an agonizing adventure. And also why I avoid it whenever possible.
I’m not joking. I’ll do just about anything to keep myself from messing about in the sucking muck and dank darkness and regrets of the past. I hate it. Writing, for me, is like self-inflicted torture. Much like working out, I also love having done it once I’m on the other side. Thing is, in the midst of the writing and dredging and writing some more—it sometimes feels as if I might not make it to the other side.
Of course I do make it; writing hasn’t killed me yet. (Though many famous writers and their infamous suicides serve to remind me of the danger.) And from the far side, I’m able to acknowledge the effort given, willing to affirm the courage demonstrated. Having survived the most recent “battle” of writing I’m lent hope that I might be brave enough to write more someday. I write in spite of the pain it brings because in the end I find the reward outweighs the cost. I find comfort and healing in the information. I celebrate the shards of truth gleaned, the bits of lost-things-found, the ability to communicate something I’ve not been able to make sense of or articulate before. Which is to say that I write because it’s the way I know to find what I need. I love (writing) what I hate (writing). It’s as simple and as complicated as that.
So, the hard part—my journaling about this year’s MS 150 and all the trouble, more than usual, that it was causing. Whatever I was avoiding or unaware of—that I needed to know—became so hunted that I could not call, trick or flush it out. I decided to turn the tables, let it think it was after me. Let it think I was alone and defenseless so that when it came close enough to attack, I could turn at the last second and look into its eyes. Would I recognize it? Know its name?
I wrote in the middle of the night after my husband was fast asleep or before the sun came up (and he got up) so that the dark and aloneness might make the contrary, persistent stalking-but-elusive more likely to sneak up on me. I felt like those damsels in distress being pursued in movies where they know they’re being followed, know it, and yet every time they stop to listen closer or look over their shoulders to catch a glimpse—nothing, no one—contriving to make them feel crazy and paranoid, which only compounds the fear and churns even more adrenaline. Which is, by the way, when they usually trip and fall or smack headlong into a tree thereby giving the pursuer its chance to attack. So, I figured, what I needed to happen was the writing version of becoming freaked out to the extent that I was rendered powerless to keep running, thereby inviting the “monster” to pounce. And I hoped I’d be able to meet it and have a little chat before it chewed me up into easily digestible pieces.
I wrote and wrote, and read and reread. I kept going back in to expand and clarify when the reader/listener part of me needed more information from the author/storyteller. Through this long process I grew to understand more fully why there were such conflicting, complex, exponentially heightened emotions attached to the MS 150 this year. This journaling also launched me into queries, which (being the good Virgo that I am) launched me into research mode, which led me to a series of serendipitous coincidences—if you believe in those—all bringing me to the discovery of a contraption called a recumbent trike and culminating in my petition to be granted use of one as reasonable accommodation for disability in order to participate in the New York City Marathon.
In the initial entries of journaling I reminded myself that there was nothing I could do to change certain things about my situation and resolved to find a way to accept, again, that life with MS means I will often be in the position of coming to terms with unfortunate situations and facts. Then, in the way one is compelled to reread a story when the ending doesn’t sound quite right, I revisited the story with the curiosity of a journalist and detective, the dedication of an attorney, jury and judge. Something, somewhere, wasn’t syncing. It was the story version of that thing that happens with puzzles, when you attempt to marry one piece with another and it seems to fit and even looks right to the eye, but in your fingertips and in your gut you can feel the barely noticeable absence of that unmistakable sensation: the soundless click of two pieces fitting flush, becoming one.
The lack of puzzle pieces meeting perfectly is a lot like a hollow, echoing knock on the surface of a wall that should be solid, through-and-through. So I took a hammer and broke in, and what I discovered was a piece of truth that was potentially suspect—a “fact” that hadn’t been picked up and examined thoroughly. This fact didn’t even appear to be one that needed verifying, much less questioning.
But first let me say what I do know, what is without question, what is sure. It is unavoidably, undeniably true that I cannot change my body of my own power in a way that would miraculously restore the balance and coordination compromised by MS. I’ve done all the physical therapy ever asked of me and more, often paying the price of over-doing. Through great perseverance I have improved my strength, flexibility and endurance. But what causes the issues that prevent me from ambulating well—and prevent me from riding a bike at all—cannot be altered by will or effort. Those deficits are in my head, literally; they are plainly visible on MRIs of my brain; they are permanent and irreversible. Therefore the story, my story, is telling the truth when it says this body cannot be changed of its own will to be enabled to ride a bike. And as of right now, medical science does not have the ability to change these things either. My lack-of-balance body is a fact that refuses to cooperate with the fact that a bike requires balance to be ridden. Thus the storyteller is right in saying the Body Fact and Bike Fact cannot be reconciled to accord because those two facts don’t go together; and furthermore the facts cannot be changed.
In my journal I wrote, “Remember learning to ride? those flailing, staggering, swerving first tries. It’s obvious that balance is crucial for bike riding. Even with a healthy, whole, lesion-less brain a kid needs a hand on the back of the bike or a set of training wheels to help steady her while she practices on her way to getting the hang of coordinating the pedaling and steering, the positioning of body and weight, all of which is guided and aided by equilibrium.” While rereading this, the listener part of me piped up: Wait. Go back. That line before—about first learning—what did you say?
I tracked back. I read the passage aloud so as not to miss anything. I heard my voice say “training wheels.” And then in the way that writers often do, I had a bit of a conversation—OK, OK, argument—with myself. Which went like this:
So what? said the storyteller.
So, you just kind of un-facted one of your previous, crucial facts, that’s what. You had two facts in the equation and now one of them is, shall we say, less than solid.
Oh yeah, how’s that?
You said, “A bike requires balance to be ridden.” But then you made a big shiny example using a kid learning to ride a bike with training wheels. Hello! Proof of a bike that does not require balance to be ridden—the training wheels, in effect, supply the balance. You were wrong!
I’m not wrong. A bike absolutely requires balance to be ridden. If it didn’t, the training wheels wouldn’t be necessary, would they? Training wheels are an accessory, an added apparatus through which someone who is balance-challenged—like a child—is enabled to ride. Training wheels, in effect, provide steadiness, they substitute for the rider’s balance until she develops her own. If you take the training wheels off before the rider is able to keep the bike steady—through their sense of balance—the bike will fall over and take its rider with it!
At which point reader and listener, author and storyteller—all of me—was focused on the most exciting idea I’d happened upon in a very long time. What if there were a kind of bike for adults whereby wonky balance might be somehow compensated? A kind of bike with training wheels sized for adults.
Does this kind of bike, this kind of grown-up training wheel exist?
This question opened up the universe of Possibility from which I embarked on a quest. Not so much to find a holy grail, but to take back a beloved, much-missed-and-mourned grail which had been plundered from me by MS over a decade before: the freedom, independence, joy and journeying of cycling—that blessed ability to move myself forward through space and time using my body’s power and determination as the engine of that adventure.
I only half-believed it might be possible. The hope burned and taunted with its lovely siren’s song and I couldn’t help it—didn’t want to help it—I waved in response. I dove in. Sometimes in life, half-believing is enough to carry you the whole way. That might even be what faith is. Maybe faith, in the end, is wanting something badly enough that you place your bet on the Hope and Promise squares instead of on one of the more plentiful squares representing what’s realistic, what’s probable, what’s less-likely-to disappoint.
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