"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.