adaptive cycling, athletes with disabilities, Bike MS, challenged athletes, FARA, Friedrich's Ataxia, fundraising, Kyle Bryant, Leary Firefighters Foundation, Life List, MS 150, NYC Marathon, Phil Keoghan, recumbent trike, Ride Ataxia, Stephen Elliott, The Adderall Diaries, The Amazing Race, The Daily Rumpus
I’ll be riding my first MS 150 this coming weekend. My brain is telling my fingertips that the next sentence they should be typing is something along the lines of And I’m so excited! But the truth is that I’m feeling more apprehension and dread than anything else. Unlike the other events I’ve participated in since getting my first recumbent trike and being allowed the joy, independence and freedom of riding again (after not being able to ride for over a dozen years due to MS-related balance issues) I feel like I’m setting myself up for a miserable failure. That the overall distance, the 2-day-ness and predicted headwinds of tremendous proportions are not only more than I’m capable of enduring, but they might somehow do me in, for good and forever. I know, I know, it sounds rather silly, even slightly histrionic, yet I cannot help these thoughts and feelings. I tried waiting them out, reversing them, tricking them into being rosy; all attempts at attitude adjustment have been for naught.
I keep telling myself that doing as much as I’m able each day of the MS 150 will be enough. Giving all you we have in any situation is perfectly fine and reasonable, even respectable. I know this and yet somehow I don’t believe it to be true in terms of this coming weekend and the ride at hand (or foot, to be more accurate). I suppose you could say I’m having a bit of a crisis of faith in myself. That said, I’m not even sure, exactly, why I’ve got such a grotesque amount of anxiety built up about the MS 150, why I feel so much pressure, and, strangely, even kind of threatened by the entire prospect.
What’s the worst that can happen? No one’s going to keep score; this is not a test. Neither is it an episode of The Amazing Race, where cameras are trained on me, picking up with their highly sensitive microphones my inevitable, pitiful whines and muffled-under-breath curses caused by discomfort; the merciless lens zooming in to blatant evidence of my un-fast-ness (a shot of a mother turtle and her barely-waddling young passing me by). There’re aren’t other teams competing against me in the way of a take-home million-dollar prize; there’s no perfect-haired, sleekly-lycra’d mean girl (that I know of) who will taunt me about my lack of athletic prowess, my age or red hair, my possible need for plastic surgery. (my husband makes me watch too much reality TV)
It’s an incredibly vulnerable feeling, being at such a loss to understand all the whys of why I feel so doomed about the upcoming ride. I just know that I do feel this way and that I’ve not been able to shake it off (and I’m a pretty good shaker-offer). Sure, some of the reasons I’m able to point to, but I know there are others mixed in. I can feel them there, breathing and occupying space, even though they’re lagging far enough back and behind to stay in the boundaries of my blind spot. I know those other reasons are there the way you sense someone or something in the dark even when you cannot see them or hear them, and I feel the same level of unease, the need to turn up the volume on all of my senses a notch. Or ten.
This is my dilemma: even if could assuage my concerns – the ones I’m conscious of – there’s all of these unnamable reasons contributing to my dread+worries, lurking underneath, overhead, in between and in the shadows. How does one formulate a plan to slay adversaries which will not show themselves? Thus, in the way of many writers, I’m trying to figure out what I think and feel – and for god’s sake Why? – by getting words out onto “the page.”
Stephen Elliott (author of The Adderall Diaries, The Daily Rumpus emails & founder of The Rumpus online magazine) says that readers, especially of nonfiction, should be (and want to be) on a journey of discovery along with the writer. He says that personal writing/memoir is at its best, its most pure and honest, when the author does not know where she’s going to end up at the beginning of her writing. I have to agree that the essays and memoirs I love and really connect with are those where the authors are writing towards figuring something out, towards an attempt at understanding, in an effort of finding a way to let go of someone or something and/or a way of beginning anew. (Stephen Elliott is a wise dude about writing and artful endeavors, if you ask me.)
I’ve been avoiding posting about participating in the Lone Star MS 150 because I don’t understand why I feel the way I do about it. Until now I’ve only told a handful of people what I’m doing this weekend, and each time I tell someone the bizarre feeling that comes over me – in a sickly-sweet flash flood – feels like shame. In the wake of that nauseating tide, the first thoughts that come to me are all pleading, desperate questions, which go something like this: Oh god, what have I done? Why did I ever sign up to do this? Is it too late to back out?
Despite all of my unattractive, self-pitying whinging I am looking forward to the event – to the people and the challenge itself, to the sights of the ride, having Gary be my cheerleader and pit crew (he is stellar in those roles, my husband!). But if I’m being completely honest, what I’m looking forward to most of all is the Finish Line. Which is to say that I’m eager to have my first MS 150 in my rearview mirror. Behind me, done, over with, checked *off* the Life List. (damn that Phil Keoghan!) ((I jest, of course))
These aren’t the thoughts and feelings I’ve had in regard to the NYC Marathon with Team Leary Firefighters Foundation
or the event I did a couple weekends ago with Kyle Bryant (one of my heroes) for Ride Ataxia.
But then again, those rides came in at about a fifth of the MS 150. (which begs the question, who the heck decided on One-HUNDRED-and-FIFTY miles, anyway?)
I’m worried about the 25mph headwinds and the hills (because Houston doesn’t exactly afford a wealth of hill-training). I’m worried about temperature and humidity (because my symptoms exacerbate exponentially with each degree the thermometer inches upwards). I’m worried about my right hip and my left knee (because they have ascribed to an S&M poly-“amorous” lifestyle in which I am the non-conconsensual M-partner). I’m worried about my bladder and digestive issues (because my idea of conveniently-spaced porta-potties is every 6-8 miles and everyone else’s version seems to be every 10-15 miles). I’m worried, too, because my weapon of choice for combating pain and fending off fatigue during long rides is my iPod (using only 1 earbud, for safety reasons); MP3 players are not allowed on the course (for safety reasons). I’m worried I might give in to the heat or pain or exhaustion, and bail too early (because there will be nice, supportive, understanding people and van transport for my trike – unlike my training rides, when I have to finish because my car is back where I started); I’m worried I may attempt to tough any challenges out for too long and perhaps cause myself more harm than the hanging in there is worth (and it is often worth quite a lot). I worry about riding most of the many, many miles alone (because though I have a fair amount of endurance built up in me, I’m not exactly what you’d call “fast”) ((and because I’ll be pedaling a 40lb recumbent trike up those hills while almost everybody else will be whizzing along on two-wheelers so light that most of the riders can lift their bikes with one hand, over their heads). There is far greater safety riding in numbers, and these are going to be more heavily trafficked roads than I usually ride (because while I am indeed adventurous, I’m still a Virgo, which is another word for caution-forward and staying-in-one-piece-leaning). The NYC Marathon is a closed course with no cars to worry about, but this is open highways and byways which will be more trafficked than the roads of the Ride Ataxia course on which I was decidedly left behind and alone after the first 5 miles of the ride and by my return trip the cops were no longer assisting at the busier intersections. I’m not a poor rider, safety-wise, by any means, but drivers often lack considerable care around bikers and seem to extend even less respect (and space) to trikers.
On top of all of these reasons for worry, I feel like absolute crap that I’ve raised, quite literally, next to no money for this event. (:::hides face behind hands:::) Which is, along with the raising of awareness of MS and the desperate need for a cure, the purpose of the ride. (:::hangs head:::) I rate the hashtag of #MAJORFAIL when it comes to fundraising. I know the problem of why I don’t raise more money for these events – all worthy causes that I’m deeply, personally invested in and devoted to – but what I don’t know is how to solve it. The problem is that getting through each day with MS is kind of a big deal for me. Add to that the toll of training for the events themselves and what’s left (time and energy-wise) is not a lot. Not a lot for family and friends, for pets and these rescued creatures we are rehabbing (or this one we are fostering). Not even other self-y things, like reading and writing, including keeping up with this and my other blog.
I flat-out do not know how to fundraise with the time and energy that I have left after the musts of each and every day. I hate this about myself. I am thoroughly embarrassed by it. No, the right word is humiliated. And that, too, is probably a big part of why what I feel for my first MS 150 is nothing close to the anticipation and celebration, even accomplishment-in-the-offing (and a big Take-That-MS!), that I usually feel for a fund-and-awareness-raising event of this kind.
I figure it’s okay to be honest about my fears and concerns for this weekend’s upcoming ride, about my overwhelming disappointment in myself (and sometimes outright, full-blown self-loathing) in terms of soliciting and receiving donations. It’s my blog and if I can’t say what I feel herein then what’s the point? I want, above all else, to be real. To be as transparent as I can be. To tell it like it is, even (especially?) when it’s not pretty. Because – as I said before and will say, I’m sure, again and again – I truly believe the UNpretty is what gives birth to, gives way to, emboldens and empowers the beautiful, the worthy-of-grateful, the beyond-measure-valuable.
And yet I do receive comment responses and emails from folks who make it clear they much prefer when I write positive, cheerful, lighthearted posts instead of the ones wherein I describe more of the emotional, spiritual and physical consequences and challenges of a life with multiple sclerosis. I’d argue that – for me, anyway – those things are not separated out so easily. Much of what I consider the blessings part of this package of illness and disability is, in point of fact, a dividend of their burdensome nature.
This dichotomy (if it even is one) is difficult to explain, and I feel as if the larger part of my writing on this blog is about trying to suss out that very thing: how the wretched bits of MS-ness are inevitably the ones that fuel learning (new ways of seeing, hearing, thinking and doing), light (often because of a wearing away that rubs thin, then through, to what’s on the other side), even a kind of grace, and a brand of gratitude so extraordinary that it really deserves another name. A set-apart, spotlight-haloed, lifted-up-onto-trustworthy-shoulders-when-you-were-little-so-you-could-see-the-parade-better kind of name.
If you live in Austin I hope you’ll come out on Sunday to the Finish Line of the Lone Star BP MS 150 and cheer for all of the riders. Each of these folks dedicates months of training to the ride, to raising awareness and funds for research to fight multiple sclerosis. I love them – every one of these strangers and acquaintances – for their devotion, for all the Power Bars and Luna Bars, GU Gels, Gatorade and Honeystingers bought and consumed, for all of their free-time given, the sore muscles, sunburn and sweat. Thank you, MS 150 riders everywhere!
Many riders, like me, actually have MS. And even though I’m not in a head-and-heart space right now to acknowledge it in myself to any great length, what I know for sure is that it takes some serious dedication and a wow-amount of chutzpah to tackle riding 150 miles on a good day with this disease, regardless of someone’s level of training and preparedness. MS, by its very nature, serves up an all-you-can-eat buffet of bad days and the “diner” has no choice in the matter, is basically force-fed. So if a rider has made it through all of those MS bad-day-buffets to arrive at the starting line of the MS 150 – which may be a bad or good day, anything in between, or both combined! – then that rider has all kinds of awesome-sauce running through her/his veins. You riders for MS who live with MS, I know what it takes and I tip my helmet to you. To all of the MS 150 riders, I honor you and I am indebted to you. I celebrate you like the 4th of July and New Year’s combined. If I could arrange a fireworks display at the finish line, believe you me, I would. I’d spell each and every one of your names out with brightly colored soaring lights, bursting, blossoming and swirling spirals with their sparkling tails across the Texas night sky.
Dear readers, please, if you’re able, donate to someone’s MS 150 ride. I’d love it if you’d donate to mine of course, but the important thing is the donation and what it will accomplish, not in whose name the money is given. If you can’t donate please consider showing up at the finish line to welcome the weary champions – or anywhere along the route. A shout-out, a wave, a Woohoo! is always appreciated. You’ve got two days of spectator opportunity, April 21st & 22nd. Come on, bring the kids, bring a friend, offer up a half-hour of your weekend to taking action which says to the world This Matters; it matters To Me. I have no doubt you will remember the experience, and we riders will remember that our efforts mattered enough for you to come out and say – with your presence and your support – that finding a cure for MS matters to all of us.
If you see a wonky woman on a bent trike, feel free to holler my name & maybe throw some chocolate. I have it on good authority that chocolate is phenomenally good for raising one’s endorphins, energy-level and, most importantly, one’s spirits. I promise a thanksgiving-filled You Rock! to any chocolate-throwers. Perhaps more importantly – in terms of incentive – Luke the wonder dog (AKA my mobility assistance dog) will be at some of the pit stops and at the Finish Line. Everybody loves an opportunity to hang with Luke :0)
And now I’m off for my last training ride before the Lone Star BP MS 150. It happens to be a gorgeous day here and I’m going to focus on that – on today and right now. When my butt is in the seat and I’m clipped into the pedals, my destiny controlled by my legs’ strength and endurance + the ability of my eyes to guide me and my hands to steer me, I don’t worry. Not about the MS 150 or anything else. While I’m riding I’m in the NOW-zone; it’s all about miles and moments, taking them one at a time, enjoying the opportunity that every one provides; the opportunity to do what I’m (still) able to do.
Remembering this very thing – by way of typing out the words on the screen right now at 9:08 a.m. – lends me some much-needed hope for this weekend. Because I just realized that once I cross the starting line of the MS 150 I won’t be feeling apprehension about my abilities, embarrassment or guilt about what a lousy fundraiser I am. I’m going to be feeling what I always feel when I ride: so freakin’ lucky I can barely stand the tender, glowing gorgeousness of it, so unaccountably chock-full of bliss and blessings that I often heart-dance into the territories of revelry, exultation and glee-indulgence. And even though I’ll probably face pain and fatigue at levels more fierce than I’ve ever experienced before because of the sheer distance of road involved, these rapturous feelings will help to alleviate those negatives, will serve to distract and even transport me from the bodily realities of MS. The ecstasies of the ride have always been enough to enable me to keep riding in the past; I have to have faith that they’ll carry me on this much-longer journey. I don’t yet. Have that faith, I mean. But I do have hope that I might summon the faith by Saturday morning – does that count?