The only people who know I have MS are my closest friends and family. I work hard to keep this circle small because I abhor the expressions on people’s faces when they learn of, well, my incurable disease. The silent stares of pity while, I imagine, they imagine me in a wheelchair. The knitted, upturned eyebrows of worry when they learn that I don’t take “life-saving pharmaceuticals.” I know that I should welcome the compassion. Instead, I just want to punch their sad faces. Even their cheery, generic words of encouragement make me angry. (Hey, anonymous blogs permit blunt honesty.) I feel a gaping, impassable divide between us: the healthy (them) and the convicted (me). Convicted with a life sentence. I don’t want to be reminded. I am quick to remind anyone with ears in this small circle that it has been more than 15 years since my diagnosis, and I have no wheelchair, no cane. I meet my 10,000 step goal each day. Ten thooooousand, that is.
For those to whom I would never divulge my diagnosis, I work very hard to project an image of extraordinary health. I refer not infrequently to my experiences running two marathons (two! not just one; two, I said!), playing on high-school and college teams (I was a tennis-doubles champion! voted “most improved in a single season” on my swimming team!), trekking in the Annapurna range in Nepal’s Himalayan mountains (with a giant backpack and no prior training because I am so darn strong and a little dumb), navigating the uneven pavement on the twisted streets of Hanoi (code words: uneven pavement — a colorful description for most, but a nightmare for anybody with walking problems…not me! I am so healthy, I didn’t even notice the uneven pavement, except I really, really noticed). I have done all of those things over the years and more. More, I said! I don’t mention that most of those activities happened before my diagnosis. While I am still very active, MS has limited me in some ways (a future story).
For both groups, I am “in the closet.” While, truthfully, some days are good and some days are bad, my constant message is: don’t worry, I am great! I am sooo healthy! I practically brag that a bizarre side effect of MS is that I get the common cold much less frequently than the average person. I don’t go into detail about the reason why: my immune system is in over-drive and tends to attack everything from the occasional bug to my own spinal cord. Details.
I feel a distinct pang of guilt for lying to anyone whom I convince that I am healthy because each person’s “disease course” with MS is unique. Despite all of my efforts toward health, I still have an incurable disease and could end up in a very, very bad situation. Let’s be honest. Officially, nobody dies of MS; however, I *know people* in their 30s and 40s with MS in nursing homes on 24/7 care, and the mother of Dr. George Jelinek (who also has MS and is truly as healthy as a horse) died from complications of MS. Dr. T. Colin Campbell says in The China Study, “No group of diseases is more insidious than autoimmune diseases.” Insidious. Ugh. Definition: “stealthily treacherous or deceitful; operating or proceeding in an inconspicuous or seemingly harmless way, but actually with grave effect.” Waaaaaa.
Most of the time, my “lie” is harmless — I spare my friends, family, and even strangers of worry, and their lives mostly won’t be negatively impacted if my health declines. But in some ways, my proclamations of good health are the worst kind of lie. My husband will absolutely suffer from declines in my health — our plans for an international and active retirement — poof. Of course, he could divorce me (and I would let him do it without objection), but I know it would break both of our hearts because we have such a nice life together.
For my employer, which sends me on assignments overseas to conflict zones or developing countries with plenty of uneven pavement — what would be the cost of medically evacuating me, if I am incapable of doing that work that I love? In fact, I did not divulge my MS when I accepted a two-year assignment in Kabul, which in retrospect was an invaluable, life-changing experience. In our pre-travel, preparatory “hostile environment awareness training,” we practiced defensive tactics in gun fire, which required me to run a short distance, bent at the waist with my head tucked down. I could do it, but only just barely, but I convinced the trainers that I was capable. Before and since then, I have taken many assignments overseas without any noticeable problems. If I had told my employer that I have MS, and they had not allowed me to travel due to fears and stereotypes of the worst MS scenarios, what would I have lost? As well, what risks did I knowingly incur for myself and my employer? Was I selfish, stupid, or hopeful — or maybe all? I think quite a lot of one of my favorite books, “Crime and Punishment,” in which the main character’s mental health rapidly disintegrates from the guilt of getting away with murder. It’s not such a stretch. This s#!+ could get real.
But is it selfish to be hopeful; to stay “in the game?” Clearly, I don’t want to be “left out” because of what might happen some day. Is it OK to have hope? Yes, absolutely, definitely, uh-huh, yep. There is huge hope, based on scientific evidence, that overcoming MS is possible (see the “Stuff I Love” section on my landing page). I devour anything that fuels my favorite theory: nature loads the gun, but the environment pulls the trigger. My daily choices are a big part of that environment. I believe in my heart — and now I have mountains of evidence to support — that I will stay mobile and healthy if my daily choices are impeccable: if I exercise, eat big organic salads, use only toxin-free beauty products, meditate, sleep a minimum of seven hours each night, journal, cultivate healthy relationships, and spend a lot of time with my beloved, furry pets. Phew, it is a full time job being impeccable.
Except when I am not impeccable, and then I feel a tidal wave of guilt for likely (yes, very likely) subjecting my loved ones to the burden that MS has the real potential to become. I swear that 99% of the time, I reject the cookie or whatever other zillion temptations with which we are pummeled incessantly in the U.S. The other day while on vacation, I ate a microscopic piece of baklava (no wider or taller than the top joint of my pinky) because it looked really, fricken tasty, and I didn’t want to be a party pooper. Everyone else’s pieces of baklava were multiple times the size of mine, and my friends looked so carefree and happy eating it. I actually figured that I had some karmic credit for being so impeccable on so many other days/months/years.
The next day, I got a familiar, totally predictable rash at the corners of my mouth that happens whenever I eat dairy. The rash was just like the eczema that covered my face like a hard mask of red crust for more than a decade before I changed my diet to vegan. Other times, I stay up too late doing something fun and get fewer than seven hours of sleep. I figure that fun cancels-out sleep deprivation in the mysterious cosmic equation. Or does it? No, I am here to remind myself (a blockhead) and you that I am fooling myself, and the cumulative effect of bad choices is bad health for me. For others, enjoy the baklava!! But for me, keep my eyes on the prize of good health. That prize is a million times more enticing than the baklava, even while others knit their eyebrows in pity or confusion, depending on whether they know that I have MS or think I am just a radical health nut and party pooper. For me, dessert is an orange (or whatever fruit). I will never deny that I.want.that.fricken.baklava, while still I marvel at the awesomeness of Mother Nature that provides everything we need, including dessert.
Impeccability is impossible. I know that, logically. But to those with MS who doubt it or who, like me, were mostly symptom free throughout the decade following diagnosis: I say, proceed with extreme caution. MS is not a joke. I would add all sorts of expletives to drive home my point, but I subscribe to the philosophy espoused by Dr. Jelinek that we are not aiming to conquer our disease. We need to care for our bodies.
Ultimately, MS scares the s#!+ out of me, but the evidence fills me with a tidal wave of power. Here, I return to enormous gratitude — for the rash at the corners of my mouth and for the ever-present, ultra-subtle unsteadiness in my walk — that reminds me that MS ain’t going anywhere. I am grateful for the knowledge of what I can eat and do (based on mountains of research) to get rid of the rash at the corners of my mouth; stop the vertigo, numbness, and tingling in my hands and feet; walk more steadily, and so on. And yet more gratitude for the strength to lift really heavy weights in a gym class full of other healthy people, jump rope (even though I can’t run — go figure), and meet my Fitbit goal. In the old days, I hated exercise. Now, I marvel at its instant, positive effect on my body.
The truth is that I can only do my best. My charades to convince you of my glowing health feel like I am dragging a huge bag of wet socks. Your pity devalues all the scientific evidence that I have a right to have hope, and it enlarges the gap between us. So I’ll give you a break if you give me a break. Don’t ask me how my MS is doing, please — I can’t explain it, and it shape-shifts. If you are interested, ask me about the power of nutrition, and *then* I can convince you. Please treat me like any other human being — no pity, no worry. And I will not try to convince you of how great I am doing; I might even admit to you that today is not my best day. I may end up in a wheelchair in the future, and you might get eaten by an alligator. Or vice versa. Let’s just be real and have some fun.
This blog is dedicated to my beloved husband and life partner, who was the first person to disabuse me of the belief that I was powerless with MS, who never lets me pity myself, nor pities me, who always expects the most of me, and who makes me laugh hysterically (the best medicine) when I am crying, angry, or pitying myself. Thank you, Sweetie.