I’ve been examining the longest relationship of my adult life — with multiple sclerosis. Having just passed our 28th anniversary together, I’m beginning to understand the ways in which MS has gradually, silently eroded my friendships with people I hold dear.
I am no longer a good friend; no longer do I have what it takes. If you lean on me, I just might fall. Literally and figuratively.
I think it started over ten years ago, when I was having coffee with a friend. We were facing each other on a green, coffeehouse sofa, and a lamp blazed on the other side of her. Maintaining eye contact grew painful as the lamp’s beams haloed around her face, turned, burned and twisted around my slow-healing optic nerve. I doubt I said anything about it; I rarely do in such situations, since the efforts people make to move out of the brightness sometimes don’t fully work, and I don’t want to appear fussy. I want to listen without barriers, but the barriers seem vaster as years pass. I came home that evening, my eye heavy in its socket, and I knew that from then on, I would need to weigh my social life against my pain.
At one point, it was my medication that kept me from friends. On the days I named “post-shot days,” hearing a voice through the telephone intensified the pain already clogging my head. And even when I was able to listen, I couldn’t retain it for more than a minute, my mind dulled by flu-like side effects.
Nowadays, clouds cluster in my mind as my cognitive abilities decline. I forget about readings and functions I mean to attend, so I’ve slipped a little off the local literary radar. Of course, any public reading held outdoors during the warmer months (which is the majority of the year where I live) will fry my neurons anyway. When I do manage to make it to a reading and then chat afterward, I find myself contributing less and less to the conversation. Ideas bubble up in my mind, witty responses, but I can’t quite reach particulars, and then I lose the thread of the conversation anyway.
I have asked friends not to call me while I’m writing; my mind enters another zone where I should focus on little else, but my concentration is easily broken. If I enter a phone conversation — another imagined world where I picture my friend’s life and try to piece together clues as s/he tells me a story — there’s no going back to the writing zone. I’m all tapped out. Remembering the conversation afterward is challenging. It comes back much later, in fragments. I now receive very few calls at all. I embrace the silence but worry that I’ve abandoned my friends, particularly those who define friendship by these conversations, especially friends who now live elsewhere and can no longer meet in person.
Meeting up with friends is still lovely, although it also drains my thinking juice. I prefer it to the phone, because when later I try to recall the conversation I don’t need to imagine something described by a disembodied voice. I just picture where we were. Less energy is required. My favorite way of maintaining contact is email; I can read and circle back to certain details that would most likely elude my grasp over the phone. It’s possible to be an attentive friend through writing.
I’m currently participating in a clinical study investigating MS’s effects on cognition. I do computer exercises as homework and go to a class once a week, where we try to identify problem areas in our thinking and share strategies to work around them. The majority of the people in the group have noticed that their cognitive symptoms of MS have adversely affected their social lives, too. Like me, they may let a spouse do the talking, silently witnessing a conversation instead of speaking up.
So far, we’ve learned that some things we might initially interpret as faulty memory or trouble multitasking might have more to do with attention and alternating between bits of information. The pathways are foggy, blocked. “Attention,” though, implies intention, as though we don’t want to listen. Now I imagine a giant phone towering above the class, shouting, “Wake up! Pay attention!”
We are. We just never knew before that attention — and friendship — would be such hard work.