I live in a suite of rooms in my mother’s house: a bedchamber with tall windows that let in the light, an office space with a computer and a bookcase, and a bathroom large enough to accommodate a chest of drawers. These rooms are perfectly aligned; I can crawl out of bed and walk straight into my office without opening a door, then push open a door to the bathroom without the slightest deviation from my trajectory. No instantaneous reaction to sensory events is necessary as there are no objects in my path. It is a fledgling robotics engineer’s ideal laboratory. Or the perfect layout for a primate cage at the zoo.
That is not to say that I feel like a prisoner in my mother’s home, quite the contrary. This layout is freeing, I can hobble about with a minimum of risk. I don’t need to use my cane inside the house, I can grab the back of a chair or press my palm against a door frame to steady myself. And when I feel motivated, I can dust and vacuum and scour out the bathtub. Those tasks take all day to complete, but the economy of space in my suite makes these activities manageable. They make me feel useful.
It is important to feel useful. My mother is 80 and suffers from macular degeneration. I drive her to her eye appointments, do a little grocery shopping, perform clean-up after she has cooked for us. I like to think she needs me because I like to feel needed. Seven months ago my husband insisted I leave his house, I had become an unnecessary burden. He didn’t need me, I needed him, and the guilt I felt had driven me to spend hours in front of the computer while he sought a more interesting life elsewhere. Things feel better now, my mother needs my company and my help. This arrangement feels better for both of us. I should say it feels better for the three of us. My husband visits regularly and we all get along quite well.
It would be easy to say that developing MS shrank my life both physically and psychologically. After all, I can no longer take impromptu walks around town or fantasize an expansive future full of accomplishments I can enthusiastically work towards now. The rules have changed. For example, what little exercise I can do does not make me stronger; the problem isn’t in my muscles and exercise does not repair nerve damage. Retirement on a fixed Social Security income guarantees me a lifetime of poverty and medical debt, which considerably narrows my future plans. I have no wakeful dreams that are not defaced by the graffiti of my disease. When I watched the movie “Avatar,” I interpreted it as a cripple’s ultimate escape fantasy, the story of a paraplegic who permanently flees his broken body. Before I developed MS, I would have watched it like everybody else and applauded Sully’s superhero rescue of the Na’vi’s home from the jaws of military industrial exploitation. Whenever I go on a first date with a man, I overcompensate for my limp and the presence of a cane by standing up straighter than usual, and, with a superhuman (and physically risky) burst of initiative, I hobble so quickly through the restaurant to the exit after the meal is over that the poor guy has no chance to open the door for me. This seems to challenge the inspirational narratives within the MS community. I have MS, but MS doesn’t have me. I am not my disease.
Can I deny that MS has me by the ass, tighter than a shark’s jaws on a hunk of flesh? But, on the other hand, how much has MS really changed my inner landscape, my unique thoughts and motivations, my temperament and daily habits?
I would like to claim it has not. I think and behave as I always have with the addition of a couple of 75-pound iron anchors strapped to my body and mind. Having MS has nudged me farther along the chronological continuum. Having MS is like suddenly becoming elderly when you are still young. I am a creakier, more deeply wounded, less impulsive version of my former self. Despite having memory problems, mental fatigue and focusing issues, I have no symptomatic brain damage. Really, how different am I?
The fact is, I have always paced the cage. Always lived intensely in my head. Never ventured far from my rooms. Always built up self-imposed inertia until I reached the combustion point and then burst into a frenzy of productivity. Always and never. Such qualifications are false narratives, just as I have MS but MS doesn’t have me and I am not my disease are false narratives. I tell myself a great many things about who I am. It seems to soothe me, these declarations of selfhood. I’m convinced I’ll forget who I am if I don’t recite these narratives.
The problem with such recitatives is that they are static concepts. Life is not static, it changes, it decays and it dies. So, too, identity. The notion of perfection, for example, is a static, fixed concept and therefore of no use to a living thing. Any attempt to describe our identities is paradoxical. The moment we say who we are or state how things are, the thing said is no longer true.
Having MS can cause rapid, sudden changes, often unpredictably so. We push against these changes by insisting we have not changed. I have MS but MS doesn’t have me. I am not my disease. But the disease is indeed an inseparable part of who we are and MS does, in fact, have us, just like experiencing the death of a loved one changes us forever, just like breaking up a marriage obliterates everything we thought we knew about love and commitment. We are not the same afterwards, nor should we be. We become, for a time, members of a select group: the divorced wives club, the middle-aged people who have lost their first parent club, the patients-in-MS-purgatory club who have had one attack but still no diagnosis. The longer we live, the more club memberships we accumulate. As worthless as I might feel on any given day, I can soothe the sting of self-loathing by reviewing my memberships. It feels even better than showing off the Girl Scout badges on my green sash when I was in fifth grade. Things might change from day to day, but what has already happened is as eternally frozen as a broken watch.
Sometimes, when I’m pacing across my three rooms at five-thirty in the morning after a night of sleeplessness, running a narrative in my head of how useless my life is and that I really need to get on the stick and do something to save my pride and self-worth, something makes me stop. Sometimes it’s the sound of a bird singing as the sun starts to rise. Sometimes it’s the sound of our renter in the apartment above as she stirs from her sleep and gets ready for work.
The sounds of life stirring and waking. For a few moments, it’s enough.