Because multiple sclerosis (MS) is an erratic chronic illness affecting each person in a unique way, I cannot say how mine is like yours or how it is different. I can tell you where I experience MS in my own body. I have numbness in my legs and arms, mostly on my left side. I experience exacerbations that turn my knees inward, collapsing my legs with the weight of my body as I try to walk, stifling my gait and shuffling my feet. I have vertigo, though not often. I have cognitive delays, but who’s to say this isn’t because I am nearly 50 years old. All of my symptoms are mine, unique to my experience, shared by others but not everyone. But there are parts of the MS experience which are universal. The first one I think of is fear. 

I feel afraid that I will someday be unable to walk, or run, or dance. This fear imagines me reliant upon someone else to do simple tasks. This fear sees me grow heavy and sedentary. And though some might be afraid to lose their vision or the dexterity of their hands or bladder control, we all have fear. This is a universal concern for us. 

Perhaps fear is what fostered my desire to run long distances, though I could also argue that something happens on a long run that becomes its own motivator. Let me see if I can capture the feeling:

I head out the door a little anxious, a little eager. I set my Strava app and Garmin watch because one shows the world what I do and the other is just for me. I take a breath; this is intentional and pushes away the fear of suffocation that haunts some of us. Lungs and other involuntary muscles have been known to just stop for people with MS; the communication between the brain and muscles gets jumbled and wires are crossed or connections are blocked. Short circuits are not limited to just ambulatory functions either. Cognitive delays are also a concern. So I roll my neck as I walk to the end of the driveway. I connect my thinking brain to my body. I stretch loosely, just my arms and shoulders. My running team jokes that only newbies stretch legs before a run; stretching comes after, saved for moments of long savoring, free of anticipation. Homage to the muscles that have carried us three, five, fifteen miles that day. 

My first few steps find the rhythm and I glide into a pattern. Tap, tap, tap, tap. My arms swing with the cadence of my footfalls. Whoosh, whoosh, whoosh, whoosh. I feel the first few minutes in my lungs as they adjust to new requirements. More oxygen is needed; the body is asking; the heart pumps its reply to the request. Within minutes, I have no awareness of anything besides my legs. As they warm, they reach, fall and dig. It becomes a dance: reach, fall, and dig, each leg taking its turn like a tango on fast-forward. Always the warmth is what registers first. Heat grows from my quads and calves meeting somewhere along my buttocks, psoas, and shins, wrapping my legs in friction. I am aware of this temperature adjustment, aware that I can still feel these legs, aware that there have been times when the numbness erases my connection there. And still there are places along the map of my body where the heat does not register. I catch a graze of something soft along my ankle and I fear my shoelace is not tight enough; half a loop has come loose and is flapping along with each step. I venture a glance down, always a risk. My largest lesion is near the c4 vertebra and I often induce tingling on my left side when I bend my neck to look down. I feel a prickle in my hamstring on that side but nothing more. Good news is the shoes are both securely tied. Maybe a leaf grazed me; maybe a phantom zing electrified my ankle. No need to stop, to stoop, to start again. So I quicken my pace.

Start slow, I hear my coach say. This is the best way to ensure you’ll have some fuel in the tank for the finish. But I have been indoors too long. I have been cooped up and need to push myself, extend my distance. I need to know that I can still do this thing, this wonderful awakening that renews me each time I quicken my pace. 

The legs again call to me. I feel their strength as I near a small hill, taking its slope into my stride. My lungs respond and increase the rate of oxygen. I huff and breathe, swing my arms faster and ask my legs to oblige. The hill climbs me, not the other way around. It faces my challenge and, in response, I give it all I’ve got. My heart is an audible drum guiding the orchestra of my body. All parts are in harmony and reach full crescendo as I crest the hill and head down the other side. 

And I love it. I love that feeling. Satori. Erudition. Enlightenment. 

Here, along these miles and distances, I forget about fear. As long as I can still move in the ways that remove me from myself, I am free. But once home, after a long run or even a short jog, I am left with me. I come home to the fear that awaits. Will there be a next time? Will I have the courage or connection to try again? The connection is what gets me. This is completely out of my control. I could wake up tomorrow and have the whole thing dissolve like yesterday’s rain evaporating from the grass into ethereal mists that rise into invisibility. I wonder, too, if that does happen, how much of the many miles I’ve run will be forgotten by my thinking mind and by my muscle memory. Regardless of my triumphant run, fear always re-enters my imagination. 

Fear is the most common manifestation of MS. Everyone who has MS has fear. We all wonder when the time bomb we polish will blow. As I catch my breath, finally stretch those well-deserving muscles, finally let the thoughts return, I am greeted by that familiar feeling. I feel it in my legs where I know persistent numbness. I feel it in the tingling that begins when my head tilts forward to tie my shoes, glance at a crack, bow in prayer. Two-hundred angry bees return to remind me that I have MS. But I breathe and stretch and pray regardless. I remind myself that fear is either side of the same coin. One side is real fear, gripping the throat and constricting the flow of air. This fear happens during a real threat and signals the body to take action. The other side of the coin is imaginary fear, the fear that says my legs may someday stop. Someday. The fear that imagines me in a wheelchair or sees me clutch my neck and pound my chest because my lungs forgot to keep breathing. Imagined. My legs have not yet stopped. My lungs continue to pull in air. This side of the coin of fear is the imaginary fear side, that haunts me more than the real fear side. But because imagined fear is such a powerful tool, can’t I also use my imagination for good?

Today, I sit quiet with my eyes shut. I imagine the miles that stretch out from my position in all directions. I can go out from here in any route I choose. I choose to see myself take the trolley trail behind the house, follow it down into Bethesda and around the shops and National Institute of Health complex. The day is sunny but I can do this imagination exercise even on a cloudy day or a rainy day—maybe especially on a rainy day. I imagine myself strong and healthy, feel my legs pull at the earth with each step. I breathe in and out as I visualize the run. I remind myself that even if I have to slow down or walk, I can do this. I can run as long as I can still move these legs. Imaginary fear creeps in but I push it away with imaginary triumph; I feel the rewards of my success, imagine the feeling of cresting that hill and heading downward toward home, see the last sprint as I return to my street, driveway, front door. I take in the feeling, now radiating from my chest. A successful run. Now, I am ready to begin.

RHONDA ZIMLICH’s work has been published by several literary magazines including Past-Ten, American Story Review, Brevity, and others. She was also awarded the 2020 Nonfiction Award from Dogwood Literary Journal, from Fairfield University. Zimlich teaches writing at American University and she enjoys running the wonderful paths and trails around the DC area.