My futile attempts to avoid my disease are thwarted daily. I tell myself– go to school, it’ll keep you busy, you’ll forget for a few hours. While this is partly true, and school keeps me busier than I’d sometimes prefer, it doesn’t form a sturdy enough blockade against the creeping truth that wears heavily on me. I’d very much like not to think about MS for a day. An evening. An hour. I’d like to separate from it and lift the drawbridge between denial and recognition. I try to forget sometimes, but I never really can. I end up on the bridge, walking the blurred line between reality and fiction.
If you’ve ever had a lucid dream, you’ll understand how fragile this in-between realm can be. It’s powerful and delicate. Something clicks, and you realize that you’re dreaming, and the dream is wonderful. You find that you can offer little commands to your body and control your environment. Sometimes the signal weakens, and you fear you’ve gone too far. Perhaps you’ve angered your brain because sleep is the only time you shut up long enough for it to soak up any ‘me’ time. You hide from the sentinel’s searchlight, leaning nonchalantly against your brain stem, whistling an innocent tune, and pretending that you’ve not the slightest clue what’s going on until the exposing beam passes. Once it’s all clear, you head right back out into the holodeck for more. Far too soon, the dream fades away slowly and ominously, as if it were an oil lamp’s flame deprived of an oxygen source, fighting for every last flicker, getting smaller and smaller until it’s snuffed out, and nothing is left but a tiny puff of smoke.
I shower and dress and head out to school in the mornings. I sit down in my quasi-comfortable chair in the lecture hall. I set my station up with water and coffee and snacks and a laptop and a pen and some paper. I open my mind for the firehose. No MS to be found. Then I hear words like autoimmune, interferon, neuropathy, progressive multifocal leukoencephalopathy, lesion, MRI, subcutaneous injection, tremor, fatigue, infection, immunosuppression… I take notes and do my best to listen faithfully, but I can’t. I start thinking about myself– about MS. I catch myself and shake it off like a wet dog, but the professor and the class have moved on.
Some days, I shrug the thoughts away effortlessly and laugh that my self-absorption knows no bounds. Other days, I want to pack up everything and never look behind me at what could have been. That feeling surfaces frequently but doesn’t hang around long. I suffocate it with visions of twiddling my thumbs at home alone every day, too frightened to accomplish anything. Not to mention still facing my MS. There are the emails and calls from the drug company, the explanations of benefits from the insurance company, the appointments to be scheduled with various doctors, the shots to be given every evening, the symptoms that tap me gently on the shoulder every so often as a friendly reminder, itchy injection sites that need to be scratched…
I watched the film, 127 Hours, about the young man with his arm stuck between a boulder and a rock wall, and a desire to survive strong enough to escape death. As amazing as he is, the whole ordeal irritated and sickened me. While I watched the movie, I didn’t understand why I resented this guy. I should have been inspired by his will and persistence. It nagged at me for days that his story bothered me that much.
I thought at first that it was because he had made that choice to go out alone and live with a high degree of risk. That wasn’t it. The more I thought about it, the less it made sense. The introduction, going out climbing and exploring caves alone, and the resolution, removing a limb, are two different things. A lot of people out there would have accepted death.
Then I thought maybe I’m envious of this incredible will to live. He broke and cut off his own arm. Could I do that? What kind of person does that? A courageous one? A stubborn one? A crazy one? And this made me think of my later undergrad days…
I was in this graduate-level (meaning–> weird projects) mammalogy class with this righteous hippie professor. Everything was touchy-feely– putting together raccoon vertebral columns, skinning and stuffing roadkill, you know, the usual. Well, this one project involved going into “the field,” both literally and figuratively. We were learning how animal populations are tagged and tracked. We were counting rats and mice. We’d put out traps and come back later in small groups in shifts to count and tag. I went for my shift with a few other students. Secretly, we were all wishing our traps would be empty. We went around locating and checking them. Empty. whew. Empty. Then I lift the last one and bingo. It’s our lucky day. We caught a little, sweet, adorable, defenseless, mottled-brown field mouse.
The tension in the pollen-filled air could have been popped like an over-inflated latex balloon. Imagine us– a bunch of adult humans, hovering around a mouse in a little box-trap like there’s a hungry tiger inside. We mumbled to ourselves while scanning each other to see who wanted to be the executioner. Not that we were going to kill the mouse… Nauseated by the excuses these pansies were offering up about why they shouldn’t or couldn’t do it, I snatched the nail clippers and said with a mocking tone, “I’ll do it.” I picked the creature up by the scruff of the neck, held him belly up, and pulled his skin taut until he stopped wriggling. I took the clippers in my right hand. My inner voice screamed at me and called me all sorts of terrible names to try and stop me, but like flipping a switch, I silenced it. Swiftly as possible, I clipped one of the mouse’s toes off. With the deed done and a little dot of blood protruding from the nub, I apologized to him and set him free. The other kids kind of stood there dumbfounded and disgusted. That mouse is long gone, but I still remember him. He paid a big price for living in that otherwise peaceful, trap-laden field. The toe I clipped was not the only one he was missing. Apparently, he was a sucker for the trap.
Of course clipping a mouse’s pinky toe off doesn’t compare to clipping my own toe off, let alone a limb. But the disconnect involved, I suspect, is similar. Though I can’t seem to do it for myself. That adds another layer. I mean, I didn’t feel the mouse’s sensory experience when I clipped off his toe. I had my own distinct sensory experience. The soft fur in my hand. The tiny bones underneath. The gritty crunch as the clippers closed over his toe. I guess it would be interesting to add that I’ve kept his toe all these years in a locket I wear everyday in remembrance, but don’t worry, that’s not the case. It didn’t cross my mind at the time to save the toe. Chalk one up for me in the sanity column. Overall, I think I’ve a pretty vigorous will to live, so I didn’t think that’s what bothered me. Whether or not I’d actually cut off my own arm, I hope never to know.
After stewing for a good while on this, and after telling a few people that this story perturbed me, the reason manifested in a clear and easily understood thought. I have nothing to cut off. I’m trapped by my disease but removing my CNS is not an option. It’ll just have to happen naturally, and my movie title would be more like 262,000 Hours. If someone did come to me today and showed me proof that cutting off my pinky toe would cure my multiple sclerosis, I’d run out to the shed and get the machete. But an arm? I don’t know… I certainly wouldn’t make a hasty decision.
When I flesh it out that way, my bitterness simply dissolves into absurdity. Ultimately, I have to learn to deal with my MS. I can’t deny it. I can’t diminish its effects on my life and relationships. I definitely can’t breathe it day in and day out. For the sake of my mental health, I have to walk that blurred line and establish my equilibrium.