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"For a long time now I have been aware that you are taking up more of my life everyday..."   
- W.H. Auden, Letter to a Wound

My Valentine Ian gave me the most extraordinary present this year: a gleaming silver oligodendrocyte on a chain: Like a starfish, but smoother, less symmetrical, reaching in all directions. Oligodendrocytes are the cells that repair and create myelin, the insulation stripped away by multiple sclerosis. I picture my brain’s oligodendrocytes wrapping their many tentacles around my scarred axons, feverishly working to insulate my nerves. They wear happy, determined faces. But it’s more complicated than that. Now I imagine them lounging on what must be a couch of a partially myelinated axon, chatting, dozing, or just slacking off. As I learn more, the picture changes: these oligodendrocytes have done their work and have retired. They would like to help, but they need more recruits. Research into making the cells that could create those new recruits and remyelinate MS lesions, possibly resulting in restoration of lost function, is just one of the many areas of investigation that might help us understand and possibly cure MS.
 
I treasure this necklace. It holds symbols of protection and repair. Many years ago Ian gave me my ex-fiancé’s first novel, which I’d helped along in early drafts. On the gift tag he wrote, “I hope I can always give you what other men can’t.” Now, he’s given me a symbol of something my body can’t fully offer.
 
A friend recently told me she’s had MS 13 years. That’s about as long as Ian and I have been married. Which brings me to the realization that my relationship with MS is the longest-running relationship in my life, twice that of my marriage. Like Auden and his wound, “nothing will ever part us.”
 
My first eight years with MS were fairly uneventful. I could forget about the disease sometimes. With no treatment options available, I simply adapted. Sometimes, though, riding my horse over jumps in horse shows, I would feel MS passionately seize my hand so I felt nothing else and dropped my rein. He at least was kind enough to do this only on the side the judges couldn’t see. (I will henceforth refer to MS as a he, but he is invisible, inaudible and rather unpredictable, most likely genderless.) Minor symptoms would bring me down to earth, I thought; forgetting was the reward. After a few years, MS decided I should quit riding and training regularly. He can be a bit possessive.
 
When the first disease-modifying therapies (DMTs) became available, faculty in my graduate program would stop me in the hall, asking if I was hopeful about the latest medication. My standard reply: “but that would mean saying good-bye to an old friend . . .”
 
“Yes, but MS is not such a good friend,” a poet wisely replied in his melodic Polish accent.
 
Gradually, MS visited more often, gripping my left leg, pulling it back with each stride, or hitting my head with the boxing glove of dizziness. I always came back to baseline after the flare miraculously left, so I could still forget about MS for long stretches of time. About a dozen years after diagnosis, I was put on disease-modifying therapy. I learned that this did not mean saying good-bye to my friend; rather, it reminded me that even when MS wasn’t making his presence known, he was still around. Depending upon which medication, injections at regular intervals would remind me that MS was imperceptibly slipping his arm across my shoulders, particularly close to my spine.
 
I no longer forget about his presence. In fact, I am grateful for the days I walk without having to think about each step, or when I can walk my dog, fingers deftly wrapping the leash, after the hard work re-learning how to use them. My amber-tinted contacts and glasses cut most glare, pain that never quite left after optic neuritis. The lenses turn my eyes coppery, beautified by illness and treatment. My vision is literally colored by my disease. Thanks to MS research I take medications I never thought possible to mask other lasting symptoms such as spasticity and pain, helping me forget, but not quite. The treatment makes me remember. Also, literally, a pill helps my memory.
 
MS ultimately cannot be forgotten. It is both my friend and foe, intermittent but lasting. If I am an MS activist, I know it is through awareness—my own, and creating it in others—in my teaching and writing, in everyday interactions, knowing that the disease is so deeply linked to who I am and what I do.
 
We mustn’t let anyone forget, least of all ourselves. Or Congress.  This week over 300 MS activists are meeting with federal legislators on Capitol Hill to urge continued funding for MS research and the FDA, standing up for those of us whose stance is words, for those of us whose stance is experience, for those of us who may know weakness, but turn our weakness into a source of strength.

Exercise, a Play in Two Lines

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 Setting: Neurology exam room. The patient wears a hospital gown and is seated on the exam table. The doctor, seated on a low stool, faces her.  Patient: I know exercise is important for people with multiple sclerosis, but ever since my MS has started progressing, I worry about overexertion. What do you recommend? Yoga? Water aerobics? Pilates? Kickboxing? Zumba? Doctor: Yes.CurtainThe actors emerge hand in hand for their bow; the patient loses balance, tugging slightly on the doctor’s arm. A fine job of acting, very realistic. Scattered applause.The house lights go up. People quizzically look at one another. As theatergoers walk up the aisle’s incline, an usher hears the following:“It’s art!”“It’s rubbish!”“It’s true.”  This comes from the last person climbing that incline, which feels to her like hiking the entire Appalachian Trail, bum leg dragging along as she hitches her hip in accommodation. Along the way she feels her abdominal muscles and hips work to propel her when other muscles refuse. She examines dust bunnies and abandoned programs twisted and rolled into new shapes, thinks of her own body’s twists and changes.I don’t think I need to tell you that I am that woman in the audience and the patient on stage.  Before my birth, my family had kind of a relationship with theater and disability. Days after my mother and father met each other acting in Tennessee Williams’ The Glass Menagerie at South Coast Repertory—she playing the limping Laura, he playing the Gentleman Caller—my mother had to go to court for a parking ticket she couldn’t afford. When her name was called, she was so nervous that she immediately went into character, limping slightly as she approached the judge’s bench.“Were you in The Glass Menagerie last night?” the judge asked. “Yes.” “You were absolutely marvelous,” he said. And he dismissed the ticket. When my mother approached the bench that day, she was unintentionally acting, driven to limp by fear, whereas today fibromyalgia and arthritis limit her mobility. She has given up the yoga she so enjoyed. Last year, understanding the way physical therapy (PT) helped me retrain my brain and legs to talk to one another, and how occupational therapy (OT) opened the channels of communication between my brain and left hand, she gave PT a try. Once she was assigned the right therapist, they worked wonders together. She still has pain, but has learned to take some strain off her knees.A couple years ago my gait changed for about a year, left leg on strike. Then my left hand slackened. I couldn’t type or hold a piece of paper, money, a pill. Motivated more by my hand’s weakness than gait change, vacillating, too, between acceptance of disease progression and the desire to walk, I talked with my neurologist. In the past I have asked doctors about exercise options, with similar results as in my two-line play: Yes to a multiple-choice question. This time, with my physical abilities far more limited than before, I was sent to specialized PT. There, my therapist Meg astonished me with her creativity and compassion. She got me walking evenly again, helping me engage my core to hold myself up. In OT, I played with thera-putty and large clips and pegboards,  then fine motor work, screwing nuts onto bolts. It worked. Take a bow, Laurie.Now I am realizing this has taken a turn for the theatrical.Physical and occupational therapy don’t always form a straight arrow to recovery. As I grew stronger, the work got harder, and I pushed beyond my limits after 2 minutes on a treadmill. I slumped into a chair, eyes glazed. Meg brought me a cool washcloth, and I said, “Thwrank you. That’sshhhh wreealy nriyce. Feewrls good.” Hilarious to hear my own drunk-talk, but alarming, too. Meg suggested speech therapy, which followed. Graduating from PT and OT was bittersweet. It was a safe, gentle form of exercise with a new friend who could help if I overtaxed my body. At a time of year when people resolve to exercise, I want to, but I fear my own boldness will harm me; in the fortnight between writing my first and second draft of this piece, I literally stepped back into my old gait. It’s time to inflate the balance ball, go back to those PT exercises that helped before. Time to try that adaptive yoga class Meg mentioned in her email months ago.

Fatigue

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Black Friday, Cyber Monday, the time between the holidays’ fuzzy, earmuffed, festive edges, these are the days when people with MS are cautioned to avoid overexertion and stress from all the festivities and their preparations. For me, these are the last few weeks of the semester, stressful, exhausting: the time when the rest of the semester catches up with my classes, all those readings, films and assignments I put off so we could spend more time with one book or film have nowhere else to go, and deadlines for letters of recommendation loom, not to mention the grading. I dare not think of the holidays. I plow forward, heart thumping on Nuvigil, eyes drooping, and I finally acknowledge fatigue.I never quite understood MS fatigue. Like so many symptoms, it’s unquantifiable and subjective, eluding communication. My neurologist’s office used to send a form to patients to fill out before each appointment. I never ticked the box next to “fatigue,” because I imagined that it must be much worse than anything daily life throws at me. To be honest, I sometimes assume that if I feel fatigued, I must be lazy. Translation: If I claim fatigue, someone will think I am lazy. It’s only when I feel near collapse or sleep, my feet full of cement, mouth unable to form words, torso leaning to torpor (and hey, anyone interested in backing a Kickstarter project for a metal stand that encircles your body and keeps you upright?), that I stop and admit I am fatigued.  In one of my favorite poems by Marie Howe, “Pain,” she writes about her brother John, whose advanced AIDS is producing waves of pain, but not exactly the “big one” that would necessitate morphine. He says to her,  you know how we’ve been waiting for the big pain to come?I think it’s here. I think this is it.I think it’s been here all along.  These lines have been resonating quite a lot with me lately. “I think it’s been here all along.” In his pain he perceived something incredible that has taken me 26 years to realize: That fatigue has indeed been here all along. To me, this state, this tired body and mind, is the norm. Living with MS for my entire adult life, I have no point of reference to understand how life would be without it. Not many, after all, can say in their 30s or 40s that they feel the same way they did at 16.  I think it’s been here all along.  Shortly after my diagnosis, my mother built structures into my life, such as short naps every day after high school, until we figured that I didn’t always need them. I missed taking the SATs because of the swirl of the new diagnosis, fatigue, stress. With no disease-modifying therapy available in the late 1980s, I had a box full of vitamins and supplements. They didn’t make much difference to me and made me feel bloated and tired, but they were all I had—but all I had against what? Back then, people who had MS were turning to beesting therapy, grapeseed oil, and all kinds of diets to try to win the battle. But for me it wasn’t, and isn’t, a battle. If I hated MS, and MS is in my body, then I would hate something in my body with its blurry, numb edges, its droop and drag, its slackened strength, its brain lag, and I would, in essence, hate myself. I don’t want to fight that fight. Instead, I try to listen to my body for the moments MS tells me that I’ve had enough and need rest. My real battle was—and is—with the outside world, the expectations that might be placed on people like me whose lives are slowed by MS. I must fight the urge to try to live up to those expectations, and be aware that my path is a different one—no easy feat.  In college and graduate school I took fewer classes, for instance, and it took longer. I got extensions for projects, but poured myself into them. Nowadays, in my professional life, I am realizing that I need to slow down, too, and teach only one class per semester, because the workload and whirr of too many ideas that come with teaching different subjects to multiple people is overwhelming. I have no idea how people manage it. No idea, because it’s been here all along. I must tend to it.

Is This Normal?

Blog Summary

At a recent MS clinic appointment, I listed my cognitive lapses over the past year.  I have mild cognitive impairment; I was tested after twenty-five years with MS and a few suspicions that I wasn’t quite up to my old speed of thought.  Normal enough to others, but not me. Dividing my attention, shifting focus, and finding words have steadily grown difficult. But these three events were different: sudden, strange, like the seizure I had nearly twenty years ago: misfires, blips, spikes on some tiny chart kept by little scientists in my brain wearing white lab coats and horn-rimmed glasses. The charts ribbon out of their little machines, and when a blip occurs, the scientists rip them from the machines and conceal them in their lab coat pockets.So I asked the Physician’s Assistant the question we all ask at some point: “Is this normal?”  Supermarket Blip  My husband was somewhere behind me, off getting milk while I ducked the supermarket scooter into a quiet aisle. He approached and said, “Chobani’s on offer.”  “Chobani?” I said.  “You know, Chobani.”  “What  . . . is . . . chobani?” I asked slowly. His face went from quizzical to startled. I play little practical jokes sometimes, and he thought this was one of them. The startled expression came when he realized I was far from joking. I was confused.  “You really don’t remember what Chobani is?” he said.  “No.” I panicked. “Is it bread?” I thought of another word that begins with a ch- sound, but couldn’t place it. Ciabatta.          Two years before, I had come home from a trip to a Maryland writer’s retreat telling him all about the Chobani Greek yogurt I had for breakfast while I was there.   So you can imagine his surprise that I did not recognize the name.  I wanted to shrink into myself. How strange it felt, as though a shell of silence had formed around me and nobody could come in or let me out.  Oh . . . Blip  I forgot.  Please hold. I need to find my list in my purse to jog my memory. Listen to some muzak while you wait, or talk amongst yourselves. La la la . . .  Found it: my list says, “time concept.”  I was scheduled for a hair cut and color at 1:00 pm. It takes me half an hour to forty-five minutes to drive to the salon. I was aware of these things. At 11:45 I was answering email and remembered feeling as though I had plenty of time. I’ll just finish this up, I thought. I took a shower. Then it was 12:20. I grabbed a book, dressed, did my makeup. I took my time. Then I glanced at the clock. How did it become 1:09?  There was no way I could make it. I was beyond late. Perplexed.  At 12:15 I should have been thinking of leaving. At 11:45 I should have realized I was running late, but somehow didn’t.  I couldn’t tie it together.  Imagine two strands of yarn. One is the hours ticking by, time itself, and at 1:00 I had my appointment. Let’s put an imaginary pin down and call it 1:00. The other strand of yarn represents the amount of time needed to prepare and drive to 1:00. The problem is, in my head the two strands of yarn were very far apart, and parallel.  I could not connect them. They were loose and felt tiny in my mind, like when my hand is weak or shaky and I can’t grasp a small object.  Parking Blip  At the vet’s office there’s a steep little hill you need to accelerate to climb, so I drove up as usual. At the top I eased the brake. The car sped up. Why aren’t we stopping,I thought. Something’s wrong with the car. I pressed harder. We headed faster toward the building. Just as I reached for the emergency brake I saw my foot firmly pressing the gas pedal, not the brake. I lifted my foot and slammed on the brake just in time.    It took me two days to tell anyone. No structural harm, but I was shaken, ashamed, confused.            When I asked the MS clinic PA if having cognitive blips is “normal,” she paused a moment.  “It’s—common,” she said, her voice measured and lifting.  And I was grateful: more common than normal, strange but shared.