Lately I find myself wondering whether my multiple sclerosis has affected my … uh, what’s the word I’m searching for? Memory! That’s it.As I advance toward my mid-50s, I have plenty of opportunity to question whether my memory lapses are a normal sign of aging or a nefarious symptom of MS. I had extra time to ponder this situation last week while I was visiting my 87-year-old mother.
Shortly after my initial diagnosis at 17, I received two cards: a glossy membership to the National Multiple Sclerosis Society with my name printed on it, and a yellow card with no gloss, no lamination, printed on card stock one step above construction paper. Temporary, like some insurance cards, but for a lifelong illness.
In small black letters it proclaimed that the bearer of the card had multiple sclerosis, a disease which can manifest itself in a number of forms: slurred speech, unsteady balance, erratic gait when walking, and slowed motor coordination. These were not to be confused, the card instructed, with intoxication. There was a space on the card to fill in my name, and another for the doctor's signature. His office had typed his name, floating loose in yellow space. I was to carry the card with me at all times from that day forward.
One of the aspects of my multiple sclerosis that I try hard not to think about is the physical damage the disease has done to my brain.
My brain had always been my best feature. I have not been blessed with great beauty or athletic prowess; I’m not musically gifted or good with my hands. But I could always rely on my brain: I’m smart, I’m funny and I can write a decent sentence when I have to.
Early this week I noticed that my right eyelid and eyebrow felt funky and my right cheek felt numb. Those are my two major symptoms of multiple sclerosis, and they appear only rarely these days – typically when I’m overtired or under lots of stress. It took me a minute to remember the other situation in which they tend to pop up. But when I did figure it out, I practically slapped my forehead and said, “Of course!”I am menstruating this week. And when my period coincides with my being tired and stressed out, as is currently the case, my symptoms often re-emerge.I have a feeling that many women with MS will agree that there’s a link between menstruation and MS symptoms. But science has not yet done much to pin that relationship down. According to the National MS Society website, very little research has been done in this area.The site notes that a very small study has found that hormone replacement therapy (HRT) may benefit postmenopausal women with MS. That adds weight to the notion that hormonal changes may indeed affect women’s MS symptoms. I have learned to take the reappearance of my symptoms, during my period or any other time, as a clear signal that it’s time to slow down. So this weekend I’ll try to catch up on my sleep and make sure I get plenty of exercise, much of it outdoors now that – hallelujah! – the sun has finally come out and warmed things up around here. There’s a new yoga studio in town that I’ve been meaning to check out; now would probably be a good time to do that. And I’ll make time to sit down with a book and a beverage to read for a while. Anything I can do to reduce my stress is bound to help. Before I know it, my period will be over and done with. But it will have reminded me of a lesson that for some reason is very hard for me to learn, absorb, and put into action: Getting enough rest, exercising, and enjoying simple pleasures is an essential part of managing my MS.
Two phrases from my high school History and Comparative Religions teacher Willie Hall woke me this morning, the sound of his voice and clomping, swaying, gait resounding in my mind. These phrases—what I call the Tao of Mr. Hall—have helped sustain me through 26 years with MS.“Life is dukkha.”“You have to look at things with a different pair of glasses.”Life is Dukkha
Dukkha is a Buddhist concept with multiple meanings. Among them: suffering, transience, pain, change, impermanence. Life is suffering. Life is change. For everybody. In other words, we are all afflicted at one point or another with some kind of pain or change. Mr. Hall introduced me to this phrase the year before I would be diagnosed with MS. He himself was disabled, one shoe heavier and larger than the other. I picture him swaying through the classroom, lurching side to side. I totter like that, or shamble. It’s sometimes the only way forward. Is this dukkha? Mr. Hall might say, “If it’s part of life then yes,” (at least during our Buddhism unit).
MS brings undeniable change, reminding us of the fleeting nature of health, the losses that come with living in an unruly body. For some, unknown symptoms stir our deepest fears. I used to be most afraid of going blind from MS. And then that sort of happened, and it was different than I expected. I couldn’t read for a year and still live with residual effects, but I got through.
After that, I feared losing my memory, so at a poetry professor’s retirement ceremony I watched attentively as she looked through a wall for a word, the early stages of dementia claiming her. Nowadays, cognitive struggles and forgetfulness are “sort of happening,” and that’s dukkha, but so is the unexpected return of a stronger stride than I’ve had in years. Healing, the impermanence of a negative condition, is also change.
Recognizing that all of life is imbued with some form of suffering, it’s easier for me to accept my body’s betrayals, my mind’s cloud. Incrementally, MS has provided me early glimpses of some eventual fragilities we all will face. I already forget. I already pee my pants sometimes. I need assistance. May surviving these experiences help me empathize with seniors when they face similar humiliations for the first time.
A Different Pair of Glasses
When Mr. Hall would tell us “You have to look at things with a different pair of glasses,” he leaned forward, pinched the temple of his metal framed glasses, and shook them emphatically. Facing the uncertainties of MS, I have looked through many a pair of glasses. Literally. The first pair I wore after optic neuritis were bifocals with a dark amber tint. They helped me read eventually, but when I looked straight ahead through the line between magnification and distance, the watery, bright haziness felt too familiar. LAST RESORT is printed on the arm of the frames. I wore others with similar tints, often hastily purchased at big box stores with too-bright fluorescent lighting. The mock-snakeskin cat eye frames on my favorite pair has since peeled back to reveal a white plastic core, like frayed myelin on a nerve.
Last week at a museum I offered my glasses to my friend as I explained my flawed depth perception from lazy eye. These amber-tinted glasses contain prisms to align my vision. “Whoa!” she said, a bit too loud, dazzled. One would think she had taken the best drug ever.“How many do you see of things right now,” I laughed, knowing the prisms that prevent my double vision can prompt it in others. “I don’t know, maybe three . . .” She took in the room through another pair of glasses, multiplying everything.Looking through another pair of glasses of course refers to accepting other perspectives, getting outside of yourself for a while: re-vision, which is a huge part of the writing life. With relapsing MS, our bodies also revise old drafts of MS symptoms, which leave and return, similar but slightly altered. Poet Elizabeth Bishop revised her poem “One Art” in seventeen drafts(!). Two lines in particular illustrate the Tao of Mr. Hall:So many things seem filled with the intent to be lost that their loss is no disaster.The lost sensation, lost strength, lost balance, lost vision—even the lost mind: it’s horrible and frightening, but not the greatest disaster, if we can survive, even thrive.
I was in my 20s the first time I tripped while I was jogging. I skinned my knee and my hands. I didn't think much of it. It was dark and I was running in an older neighborhood in Washington, D.C., with lots of cracked sidewalks and tree roots. It could happen to anyone. Right?
Over the next 15 years, there were many more falls. Sometimes while I was running, sometimes walking. Sometimes in very famous places (good morning, Grand Central Station!), sometimes on anonymous sidewalks in quiet towns. I never had any trouble making excuses for my tumbles – clumsiness, ice or too-high heels. I told my stories for sport at cocktail parties, laughing them off and inviting friends to join me in that laughter.
According to the calendar, it’s supposed to be springtime here in Connecticut. But the weather begs to differ; an icky mix of sleet and rain is dripping from the sky, glazing the six-inch coating of snow that accumulated overnight.
It’s been a long, cold winter in these parts. That hasn’t slowed me down – much. I’ve walked the dog in all kinds of weather, braving wind, sleet, frigid temperatures and slippery paths. I’ve kept my spirits up despite the early dark in the evenings and the late light in the mornings.
I made up my mind long ago that if I were going to live in New England, I would have to learn to love it in all seasons. Otherwise, I might find myself less than happy for months at a time. That seems like a waste to me. So I forced myself to embrace winter.
But I’ll admit I’m more than ready for spring and ultimately summer. The sight of a robin on the lawn the other day made my heart glad. Because, as much as I say I’m okay with winter, I really don’t like being cold. In fact, unlike many people with MS, for whom heat exacerbates symptoms, I much prefer to be warm, even hot. Give me a tank top, shorts and a nice, long, sweaty day, and I’m golden.
It wasn’t always that way. Growing up in the Washington, D.C., area, I hated the blazing sun and the humidity that started in July and lasted through the end of September. But back then I lived in air-conditioned luxury, and the contrast between the cold I experienced inside buildings and cars, and the heat outdoors was miserable.
Today I live in a house with no air conditioning. I don’t even run the air when I’m in the car. Over time, my body seems to have adjusted. At first I was just okay with the heat. Then I kind of started to like it. Now I crave it.
But that’s not the whole story. About the same time I learned I had MS, I started experiencing funky symptoms whereby my fingers would turn yellow and waxy, and also kind of numb whenever I got cold. I finally learned I could reverse that by running my wrists under warm water in the kitchen sink. But before returning to normal, my fingers turn all kinds of strange colors, purple and blue and red spots mottling the wax-yellow background. It’s quite the horror show – just ask my kids!
I have since learned that I suffer from Raynaud’s phenomenon, a generally harmless, though ugly and uncomfortable, condition in which the capillaries in my hands (and now sometimes my feet, too) constrict and draw blood away from the surface of my skin. Another thing I have learned about Raynaud’s is that it can, like so many other things, including some symptoms of MS, be triggered by stress.
So I look forward to the coming warm months, which promise relief from the cold and from Raynaud’s, in a big way. How about you? Are you more comfortable and happy when it’s cold outside or when it’s nice and hot?
I was in a perfectly straight line, flat on my back, half in, half out of our powder room, with my head and shoulders resting on the seat cushion of my wheelchair. The cushion had slid with me and I’m sure it had protected my head and neck from hitting the hardwood floor of the hallway. This mishap occurred on election night. My husband Michael came in the front door, saw me, dropped his briefcase and computer in the kitchen, and rushed over. My husband helped me get back into my wheelchair, pushed me into the powder room where I had been headed for my pre-vote pit stop, and before I even got up I was down on the floor again.
I started to cry while Michael stood over me and pronounced that he could not get me up and was dialing 911. He told me to get a grip. I did not appear injured and at least I had all my clothes on! As I laid there, my daughter Hannah appeared, with an “oh there’s mom on the floor again" look. At least she inquired about my wellbeing and from my prone position I reassured her I was OK. Then, without skipping a beat, she inquired if I thought she had too much eye shadow on. She leaned over me so I could get a closer view and we briefly discussed the concept of how less is sometimes better than more.
As we waited for reinforcements to arrive, I remembered a summer when I had found myself in a similar situation. At the time I had a substitute aide, a woman of great proportion with tattooed eye brows. With the help of my petulant daughter, she dragged me out of the very same powder room and deposited me back in my chair. I was unhurt, but badly shaken. Hannah, sporting the same exact mom-on-the-floor look she had tonight, announced that she was going swimming. Then the aide asked if I knew that she worked in a strip club when she wasn’t doing home care. The timing was perfect: My mind immediately switched from self-pity to bizarre fascination. As I remembered this fond memory, the EMTs arrived and quickly had me back in my chair. God bless them! They even told me to never hesitate to call. I pulled myself together; Michael and I voted; we grabbed a bite to eat and returned home to watch the returns. Hannah came in and joined us. It was as if the evening’s earlier events had never happened. I don’t know about you, but falling to me is one of the most frightening aspects of having MS. Injury, embarrassment, loss of control and that nagging little thought that a fall could happen any time, any where even on a good day. But, on the other hand, my family’s ability to take such mishaps in stride reminds me that life does not stop for MS. Maybe it pauses sometimes, but it does not stop. And even from the floor, life can be interesting. A strip club?
Growing up in the 80s, family trips to the local shopping mall usually involved my brothers and I heading to the arcade and playing video games until our parents gave us the sign that it was time to go. For this ten year old, it was sweet music to my ears as the fresh quarters rattled around in the coin dispenser, the converted dollar bills courtesy of Mom and Dad. My time and quarters were spent playing mostly sports-themed games, as not much else really piqued my interest. After I spent my last quarter, I’d wander over to the game “Gauntlet,” not to play, but to watch for a few minutes until it was officially time to leave. “Gauntlet” was very different from “Tecmo Bowl” and the other sports games I usually gravitated toward; rather than trying to beat another team by scoring more points, it was about pure survival.My eyes were always drawn to each player’s score, highlighted in big red numbers, usually rapidly descending as players struggled to complete the various levels. There was one memorable phrase I remember from the game: “Your life force is running out!” It was uttered by the computer narrator whenever a player’s health had decreased to a threatening level. As I watched, I’d try to predict in my head at what precise moment the computer would start providing this ominous and repetitive alert.SO TIRED OF BEING TIREDFor those with MS, energy is a prized resource, available only in limited quantities. Read any medical definition of multiple sclerosis and “fatigue” will be listed as one of the more common symptoms. The quotes are an intentional and caustic nod to this word; personally, I find the term “fatigue” lacking in accuracy and descriptive affect on the realities of living with MS.Webster’s defines fatigue as “weariness or exhaustion from labor, exertion or stress,” but with MS no exertion is required to enter a state of exhaustion; rather, weariness is constant - a baseline. Normal, daily routines, like showering and shaving, are obstacles to be planned for and managed, all in the name of preserving my energy. Even on my best days, I regularly feel the dark cloud of exhaustion hovering, tempting me to surrender and retreat to a dark and quiet spot, isolated from others. One moment I’m reading a story to my children or enjoying a dinner with my wife … then suddenly, my energy has vanished, my bones feel cold and achy, my mind is hazy, unable to think clearly. Often, I worry that my children think I’m ignoring them, my friends and family feel I’m disinterested, or new acquaintances wonder why I seem so tired and unengaged.MY OWN GAUNTLETBut what if I had my own colored indicator, floating above my head, clearly identifying my energy level? My “life force” would blink in big numbers, and a friendly alert would go off when a low level was reached, notifying me and others that my energy was tapped out or, as with most days, surviving on fumes. Understandably, some might hesitate to broadcast their personal battle, a scarlet MS for all to see. But it would also be a portal for seeing through the MS looking glass, easing confusion and misunderstanding, highlighting our strength in battle and a wonderful way to educate ourselves and others on the moment-by-moment struggle we face against our own bodies.
"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 WoundMy 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.
I'd like to think that I am a rational person, guided by logic and good common sense, but then it gets hot outside and that goes out the window.
Like most people with MS, I am heat intolerant. Many of my symptoms get much worse in hot weather. I am pretty much constantly fatigued, with a headache. I have tremor that makes it hard to do tasks requiring precision with my fingers, such as typing a message on my phone. My feet tingle throughout the day and feel like they are on fire at night.