Thursday, December 13, 2012


Laurie Clements Lambeth

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. 

Laurie Clements Lambeth’s MS diagnosis at the age of seventeen brought her to poetry.  Her first book Veil and Burn (University of Illinois Press, 2008) was selected for the 2006 National Poetry Series. Currently at work on her second poetry collection and a book of creative nonfiction about MS, she also teaches in the Medicine and Society program at the University of Houston, where she earned MFA and PhD degrees in Creative Writing. To learn more about her work, please visit


  1. I think the thing that hit me the most was the metal stand. I list to starboard at times. Lately, when I'm getting done with the dishes or have been on my feet doing "things". Frustrating.

  2. Beautiful written - the poem reference was very poignant too. Thank you

  3. It wasn't until my disease turned Primary/Progressive about 5 years ago that I began to realize I had been sick for a long time (it's been there all along). The periodic episodes of dizzyness, numbness, fatigue, etc were all shrugged off in my youth since they would all go away after brief periods and never got worse. One of the first signs of the turn was constant fatigue. Not feeling tired, worn out or run-down; I'm talking genuine fatigue. The "I just got out of bed and I feel like I can't move" kind of fatigue. I was the "big one" it was "here" and now I realize it had been all along. Thanks for making me feel a little less alone today.

  4. Most people I know think I have good days and bad days. In reality a lot of us have bad days (which we chose to mask) and worse days. I can easily get fatigued out shopping. I "hit a wall" and just have to go home. Traffic, parking, crowds, noise, and once you're in the store the decisions (or lack there of) can be stressful. I experience this a great deal of the time. Now I only go out with a short list and even then, if there's a problem with an item on the list, I get stressed. When I can get in and out with what you want, I am much happier when you get home...

    1. You just described every shopping excursion I take. I get in stores and immediately fold. My head spins, my legs weaken and I almost feel panic if it doesn't go just how I need it to. In and out is a must!

  5. So true that we are afraid that people will think we are lazy. Spent the day shopping and hit the wall, but had to keep going because I couldn't miss our Christmas celebration with my employees. Looking forward to napping today!

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  7. Great post. I didn't figure things out until my late 30's, after a couple of marathons and graduate school (during which I was having some problems but refusing to be seen as a hypochondriac). The problem is that you decide your just being "weak" and need to suck it up. Pretty soon it catches up to you. When I can't form words due to fatigue, I constantly make excuses to people around me, as if after 4 years of exposure to me in my current iteration hasn't taught them anything...

    Don't worry about what everyone thinks and turn down the RPMs!

    Thanks for the article!

  8. Great Commentary...Defeat is not an option, but having ability to recognise fatigue and knowing when to 'slow down' a bit, is. Shopping? No way! Thank goodness for online stores.
    Best of luck to you and everyone whob reads this!