Pain & fatigue can make you want to escape, can cause social isolation, a disconnect from other people, from the outside, natural world, and from the self. Distraction is a great way to mitigate pain & fatigue. High on my list of escape-through-distraction are things like knitting, writing, books, music, poetry, films & TV shows. But none of those things gets me out of my house, which is where riding a recumbent trike comes in.
Having cycling to look forward to is what gets me out of bed most mornings. Cycling keeps me away from the couch, easy chair & computer desk for as long as possible on any given day. My trike gets me out of & away from this house, which is quite the challenge considering the amount of pain & fatigue I have to battle 24/7. Before my personal struggles with illness & disability, I never had a clue just how paralyzing the sadistic duo of pain & fatigue could be.
The action of pedaling doesn’t negate my pain & fatigue, of course. Neither does it make me forget about what hurts or the exhaustion I feel. But I am able to shift my focus, to swivel it outward instead of inward. When I’m riding I have to be vigilant in regard to my surroundings for safety’s sake. I have to watch the road for pavement conditions & the sky for weather. I have to pay close attention to the behavior of drivers & other riders around me. I monitor lane-markings, traffic signs & lights, constantly check for any obstacles, especially smaller debris – like glass, nails & the thin, steel wires from blown-out car tires – that may present in my pathway. I have to listen for horns, engines, brakes squealing, tires skidding, anything & everything that could impact safety. This kind of vigilance takes a great deal of concentration. That intense focus with regard to everything that’s going on around me serves to distract me from what’s going on inside of me, from the usual hyper-awareness of hip, hand, knee & abdominal pain, from the undertow & fireswamp of fatigue.
When my focus is more about what’s happening in my vicinity than about whatever my body is experiencing, I’m most like who I used to be before MS came into my life. I’m most like – I can only imagine – who I’d be, today, without illness or disability. The more I’m able to “unplug” from the burning, gnawing aches & the weighing-down drag-suck of exhaustion, the more I’m able to connect with other people & the natural world. The more I’m able to connect with, and be grateful for, all that my body is still able to do.
Like push those pedals along city, country & coastal roads, slowing down to listen to the wing-flaps of a flock of birds lifting off telephone wires as I pass by. Like riding five miles straight “into” Galveston Bay on the Texas City Dike while dolphins play tag to my right & dogs chase tennis balls & splash through waves on my left. Like taking short-cuts through neighborhoods where I go slowly enough to wave, to say Howdy & Good Morning. Like meeting folks who live nearby. Eleanor, who always wears colorful hats when she’s out in her yard gathering herbs or flowers from her garden. And Rufus, who makes his living selling stuff he finds at the city dump. (I always ask if he’s found anything good the day before & he seems to live for talking about each salvaged item. I love pulling over to the side of the road under the shade of his huge, old mimosa tree & listening to the stories of found treasure.) Like hearing girls in schoolyards singing those rope-jumping songs & the sweet clamor of kids on swings & basket balls bouncing against asphalt. Like breathing in savory salt air along the bay & coast, the pungent smells of shrimp boats & bayous, laced with pine, cedar & magnolia. Like bearing witness to the sherbet layers & swirls of Texas sunrises & sunsets, the charcoal smears & smudges of stormy skies.
All of that & more comes courtesy of riding, which I wouldn’t be able to do without three wheels & that recumbent position. The former leaving me free from worry about falling because I don’t have to balance, the latter lending enough positional comfort to allow my body to work, to power the pedaling.
When I’m at home alone my couch, trapped by fatigue, mired in pain, I feel completely separate from everyone & everything. I feel like the world is out there, way over there. So far I can’t possibly reach no matter how hard I try. I feel hopelessly sick & broken; I feel a kind of lonely that’s like pollution, filled to overflowing with heavy, sticky, darkness. Sometimes, when pain & fatigue & isolation have had their ways with me for far too long, it feels as if the characters in books & on the television’s screen are my only friends. Pain & fatigue (the kind born of illness and/or disability, the kind that keeps you from getting out & living your life, from spending time with your real friends) has a way of holding you hostage inside your own home, inside your own mind & body.
When I’m out riding I feel as if I’m at the very center of the world. I feel a part of the people around me. I feel like I’m welcome. Like I belong. Like we are all traveling somewhere – adventuring – together. And I feel this way even when I’m riding alone, even on the days I may not stop to talk to anybody.
Riding a recumbent trike affords me the gift of largely tuning out the negative & tuning into the positive. Cycling is what allows me to connect with life in a way that turns the volume down on my disabilities & the realities of my illness. These three wheels are almost a time machine, where I have the power to turn back time (for awhile) by pedaling forward. It’s a wonderful irony: I have to use my body to cycle, in order to disconnect from the very body that’s ferrying me along, so that I can reconnect to who I am sans MS. (Or as much “sans MS” as I’ll ever get, anyway.)
I care so very much about raising awareness of recumbent trikes because I want everybody looking for the same kind of disconnect-in-order-to-connect & escape-in-order-to-be-a-part-of that three wheels can offer. Which is why I do things like the NYC Marathon, Bike MS, Ride Ataxia, and other events. It’s why I’m doing the San Diego Tri Challenge in October. There’s a world of people out there – many of them children, many of them Veterans – who desperately need a way to unplug from the day-to-day realities of their bodies, who need a way to connect, to live in the moment in a way that leaves, for a little while, discomfort & disability outside of the equation. Or at the very least, a way to gain distance, separation, from the hardships. A way to dull some of the many sharp edges, so that wellness, strengths & abilities can take center stage, shine & be celebrated.
Three wheels can transform a person’s life. And in some cases, I believe recumbent trikes have the power to save lives. I certainly feel that riding a recumbent trike saves me. Cycling provides connection with the beauty in life, with the beauty that is life, and makes it worth living.
If you’d like to help others who are like me – who need a way to tune out some harsher realities & tune in to their abilities & the world around them – Challenged Athletes Foundation is a great organization to champion. By donating to my efforts in the upcoming San Diego Tri Challenge, you’ll be giving – above & beyond any dollar amount – the gift of connection.
There are other ways to help. Spread the word of recumbent trikes, ask your local bike shops to carry recumbent trikes & make a point of welcoming trikers on your group rides. When you see one of us out riding, wave & smile. You might even slow down (if necessary) & ride along for a while. Which is to say, please, reach out – connect! – it makes a difference. YOU can make a difference.
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This will be my first triathlon since MS came-a-vistin’ to my life. I’m raising funds & awareness for Challenged Athletes Foundation, an organization devoted to making a difference in the lives of folks with illness & disability who need our help to enjoy a more active, independent, wild-&-wonderful life. Like this guy, JJ.
Wanna make a difference? You could pass on my story & donation page: email, Tweet, Facebook post – anything you can think of to spread the word would be an enormous to help to me. And, more importantly, to CAF :0)