Twenty years ago, on a snowy November night in Chicago, my girlfriends and I were walking to the Cabaret Metro to see a rock show, when the left side of my body was erased. Sensation and liberty of motion disappeared between drags off my cigarette. Frozen in mid-step, unable to take my next—and freaked out of my wits—I spent the night at my friend’s apartment in Wrigleyville drinking beer and smoking pot. I knew that wherever I was headed next was not going to offer beer and bong hits. Within 24 hours I found myself in St. Mary’s hospital in my hometown of Madison, Wis., with an IV steroid plunged into the top of my nonworking, unfeeling hand.
When most people think of multiple sclerosis, they think of wheelchairs. As the doctors told me, MS is a chronic degenerative disease that affects the central nervous system. But paralysis isn’t the only way MS can strike. It badgers its victims with a myriad of symptom combo-platters that include numbness, tingling, blindness, spasticity, incontinence, and a long list of other extremely unpleasant, embarrassing, and very uncool symptoms.
After my hospitalization, I had no other choice but to move back home. I read mountains of books about MS, chronic degenerative diseases, healing and wellness, and the first offerings of what was the beginning of a burgeoning self-help book revolution. Most of the books ended up in our orange chrome fireplace. In an effort to heal and return to my earlier rock-and-roll dream, I rode an Exercycle and received steroid injections twice a day. Working the afflicted fingers on my left hand, I practiced guitar scales and wrote letters to strangers (Lorne Michaels, Dave Thomas)—things I felt compelled to do after watching endless hours of television in hope of numbing my shocked, hurting psyche.
The following August, deeming my condition undetectable to the untrained eye, I packed all of my possessions onto a Greyhound bus and moved up to Minneapolis with a single goal: starting an all-women rock band. In the land of Mary Tyler Moore and 10,000 bands (most of them good to great), my girlfriends and I taught ourselves how to stand, play, and sing all at the same time. During our self-imposed band boot camp we mastered the guitar tuner, while chasing swinging microphone cords duct-taped to the ceiling and offering loose interpretations of Black Sabbath’s “Iron Man” and Kiss’s “Rock and Roll All Night.” Always in the back of my brain was the fear I might be struck down—it spurred me to work quickly and with intense concentration. (Both new concepts for me.) Once we had cobbled together 20 minutes of original material and a handful of easy covers, we played our first gig. From there, we never looked back.
Aside from a handful of close friends, no one in Minneapolis knew about my preexisting condition; I was fortunate to be symptom-free enough to keep my dark secret in the closet. Rock and roll has saved many lives, and it certainly saved mine. This very loud, rhythmic, physically demanding scream therapy, coupled with the meditative act of writing song lyrics gave me some semblance to salvation. Before my diagnosis, I was starting to resemble that college-town loser who’s older than the other undergrads that Ben Folds sings about. MS was the kick in the seat that knocked me forward.
Intimacy is difficult when carrying around a heavy secret. In the years following my diagnosis I felt obliged to introduce my albatross to fellows I’d been dating for a couple of months, in hopes he’d like me enough not to dump me, in spite of the fact I was a walking time bomb with an unsavory disease. I’d usually say, very quickly, something to the effect that “I was diagnosed with MS, but I’m not sick or experiencing symptoms—chances are I might not have it at all!” To my shock and amazement, I was seldom dumped because, as a defense mechanism, I worked overtime trying to be extra-pleasing to my partner. Or because I became the dumper.
It seems to me that most of us have something, whether we can see it or not: family history of mental illness, color-blindness, inverted nipples, etc. All of us are somehow afflicted, and we just plod through. Dealing with neurologists steeped in the teachings of Western medicine can be challenging. The true workings of the human brain are still a mystery, and the origins of chronic degenerative diseases are still only theories—things scientists tend to be uncomfortable with. When I told my first neurologist in Minneapolis that I ingested evening primrose oil capsules daily along with a pile of vitamins, he gently chuckled—he might as well have patted me on the head and scooted me back to my bed, playing the Grinch to my Cindy Lou—and said something like, “Do whatever makes you feel like you’re helping yourself.”
When I mentioned that the steroids prescribed to me for six months following my diagnosis made me balloon in size and question my sanity, he responded with, “Well, yes, I usually prescribe a mood stabilizer called lithium.”
Funny, but vitamins, yoga, a better diet, and playing in a rock band were working wonders. No one knows for sure why some people get sick and stay sick and some people are able to move through life symptom-free after an episode. So far I’ve been very lucky.
After a few years in remission, I relaxed a little. It seems to me that most of us have something, whether we can see it or not: acne, family history of chemical dependency and mental illness, lupus, color-blindness, crippling shyness, inverted nipples, etc. All of us are somehow afflicted, and we just plod through. Not much else we can do, really. I comforted myself with the idea that at least I knew what I was dealing with and became less paranoid about how I would be received by others after learning about my condition.
I very much wanted to have a baby, though I was very frightened of what could follow. Conventional neurological wisdom states that MS symptoms disappear when a woman is pregnant, but worsen after the baby is born. Again, I didn’t let it deter me. After our son was born, our morning coffee jockey at the corner shop suggested we meet her mother, Janis, who had done a fine job of raising her and her five siblings.
A kindhearted hippie, Janis would drop by for a few hours a day, helping out where she could and running errands with me. She put me on a diet rich in lineolic acids and made me carry my baby instead of putting him in a stroller. She had me walking all over town with said baby in a sling while imparting the wisdom of her experience. She recognized that I was more frightened of motherhood than I was of becoming sick and disabled. I breastfed because, according to my reading, it was supposed to bolster the mother’s immune system as well as the child’s—and because Janis was, of course, a La Leche League leader. I waited to be struck down. Nine years later, I’m still standing, running, writing, biking, dancing, and singing.
Once a year I undergo an MRI of my brain, which involves lying on a table with my head strapped in place before I am plunged into a sarcophagus-style chamber while listening to industrial noise. A double dose of tranquilizers are required for this annual excursion and I pretend like I’m in a German disco. After a radiologist has read the results, I meet with my neurologist. So far, so good.
New courses of treatment for MS have emerged since my diagnosis. There are daily or weekly injections available that are supposed to stop the disease in its tracks. I know people who depend upon these injections and do very well with them, and I know people who became so ill from the side effects of the drugs that they decided to take their chances without. My doctor so disagreed with my decision not to take them that I had to replace him. I’m not inclined to fix what isn’t broken, but if I ever get in trouble, I’m grateful that there are options out there.
I’ve become adept to recognizing eyes that won’t meet mine, the individuals who recoil and jump ahead to visions of me in a wheelchair. There’s not much I can do about them. I think that not getting stuck somewhere sad and hopeless in the recesses of my own mind have helped me keep moving. After 20 years of remission (and psychotherapy), I’m still chasing impossible dreams. They keep me on my feet.
