Month: June 2011

The Illumination

The Illumination
By Kevin Brockmeier

Every day, I am in pain. Every day, I read. Coincidence? Maybe not. I have multiple sclerosis to blame for my quotidian pain. But today I suffer from a form of pain that can’t be attributed to chronic illness, but rather, to chronic habit. I’ve got a crick in my neck. I blame the brilliant author Kevin Brockmeier. His novel, The Illumination, near immobilized me. It’s not the kind of book you walk away from (assuming you can walk.)
The premise of the novel is deceptively simple. One afternoon, there is a random change in the universe. Pain takes on a new property. Pain emits light.
To give an example: if I were a character in the world of The Illumination, there would be a white light emanating out the back of my neck, shimmering from the cervical through the thoracic regions of my spine. My tingly calves would glow with neurologic noise. It is entirely possible that my hair would be adorned with bright pinpricks, like the ones I see on MRIs of my lesion riddled brain. As my pain increases with the passing hours, so would the wattage. By nightfall, I’d be a beacon. It would be impossible to fall asleep or stay asleep beside me, as I am also an insomniac. No doubt I would be confined to a rocky outcrop on the coast of Maine, where I would be propped up facing the ocean. I would accept my fate as a living lighthouse, and wear a long white t-shirt dress with one thick red horizontal stripe.
Or maybe not. The actual characters in the Illumination are more interesting than that. They don’t come off as metaphors, but as ordinary people, doing the extraordinary job of expanding the narrative while simultaneously moving it closer to the goal. The personal, the religious, the literary, and the cosmic ramifications of The Illumination are explored from multiple points of view, all equally compelling. That’s quite a trick.
This playful narrative opens with a character that blames her pain on her ex-husband, in much the same way as I blame the crick in my neck on Kevin Brockmeier. It’s not Kevin Brockmeier’s fault that I got a crick in my neck trying to unwrap the many layers of meaning in his book, any more than it’s the ex-husband’s fault that his wife nipped off the tip of her thumb while trying to cut through a package he’d wrapped in “a thick layer of transparent tape, the kind fretted with hundreds of white threads, the latest in his long campaign of bring needless difficulty to her life.”
Brockmeier’s novel is fretted with perhaps hundreds of narrative threads, none of them needless, each a delight. I would love to dissect every chapter in this post; but I will leave the pleasure of discovery to you. It’s the first novel I’ve read that managed to coerce me into literally reading through another point of view. Get ready for the shock of recognition once you realize that this is not an ordinary novel, but an elaborate game. Move over, Nabokov.

Prescription

Me: My neck hurts from too much reading.
My son: Maybe you should take up bird watching.

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Still Standing

Sixteen years ago, I coerced my husband into doing something crazy. I had just come back from a doctor’s appointment that hadn’t gone at all well.
When I arrived at our shack, I was crying like a baby. I mean this quite literally. I was crying so hard, I could not form a word.
We both found my speechless sobs distressing. My sweet husband’s dark eyes were widening with horror.
Just a few months earlier, his mother had been diagnosed with terminal cancer. He’d already learned about the flipside of love.
My husband loved me. I now knew he was going to lose me, was losing me already, one little brain lesion, one little spinal cord lesion, at a time.
Until that day, I hadn’t heard of multiple sclerosis. I didn’t know for certain if an MS diagnosis was better than a terminal cancer diagnosis, or far, far worse.
I wanted it to be better. Far better. As much for my husband’s sake as for my own. I wanted to comfort the poor guy, who was standing there, unflinching, receptive, gathering his strength to endure the unendurable, in whatever form it would turn out to take. I wanted to tell him, the love of my life, “I’m not going to die.”
Which was, of course, both the immediate truth and a big fat lie. I wanted to say it anyway, but I was blubbering so hard, even I couldn’t get a word in edgewise.
I knew MS wasn’t terminal. The doctors had been very clear on that point. I was going to die with MS, but not necessarily of MS. When I eventually die, it will most likely be due to some other cause.
But to deliver even this cold comfort, I would have to quit bawling. I would have to pull myself together. I would have to form some words.
We had the same idea at the same time.
My husband handed me a pen. The man can be counted on to carry a pen. And that’s when it occurred to me that I didn’t have to do the explaining. As he rooted through our rotting shack for a blank piece of paper, I rooted through my cluttered pocketbook for the wrinkled MS Society brochure.
Then we made our exchange—a sheet of blank paper for a printed pamphlet.
I wrote on the sheet of blank paper, “I’m not going to die.” When I looked up, he was scanning the pamphlet.
The look we exchanged said it all. We were in deep trouble.
Oddly enough, I didn’t sob harder.
Already, I started to feel better. The good news was, I wasn’t in it alone. And yeah, that was also the bad news. But as bad news went, it was at least bearable bad news. For me. I couldn’t imagine how it could possibly be bearable bad news for my husband.
Lucky for me, my husband exceeds the boundaries of my imagination.
The man was capable of deciphering the pamphlet. More so than I was. I have a head for nuance. I have no head for statistics. The nuance of the pamphlet was ominous. It conveyed this the-glass-is-an eighth-full kind of optimism that I found highly suspect.
My husband has a head for nuance, but he also has a head for statistics. He could at least calculate the specific inverse of an eighth full. He isn’t bullied by statistics. Conjecture outright bores him. The guy has a constitutional aversion to freaking out about the future. This quality has served us very well. Which is not to say the diagnosis did not scare the hell of him, out of us.
My husband and I had always intended to have a kid “later.” “Later” meant after we’d both finished grad school. “Later” meant after we’d upgraded our living quarters from a $375/month shack.
The MS Society pamphlet blew apart our concept of “later.” We were just kids. To us, “later” had always meant, kind of like now, but slightly better. But even according to the optimistic pamphlet, “later” meant, kind of like now, but an indeterminate fraction worse. And then worse still. And then worse still.
As I saw it, this meant only one thing. We couldn’t count on “later.” If we wanted a kid, we had to have one immediately. Like, while I could still push a carriage. Like, while I could at least lift a baby to my breast.
Gentle reader, “later” turned out to be a whole lot rosier than my mildest conjectures.
Our son is fifteen now. The child has never spent so much as a night in a shack. (Wait ‘til grad school, kiddo.)
We recently took our healthy son with us to Iowa City for the 75th Anniversary of The Iowa Writer’s Workshop. We gave him a tour of all the places we’d lived while I’d studied there, from the crazy apartment on North Dodge in the back of Hilltop Tavern, to the farmhouse in Swisher, to the metal house on G Street, to that sorry, ramshackle shack.
My husband took a picture. He said, “I can’t believe that place is still standing. I underestimated so many things about the world.”
So did I, my love. So did I.

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Stress and MS

Happy day! The verdict is in. Multiple Sclerosis (MS) is not caused by stress.
The NIH (National Institutes of Health) has been following two enormous groups of nurses over two massive spans of time, and they have found no link whatsoever between traumatic life events and the onset of multiple sclerosis.
Zero, nada.
I know I sound a bit overblown. But that doesn’t mean that I am exaggerating. I’m not even over-exaggerating (a distinction we often make in my larger-than-life family-of-origin.)
The two groups studied really were enormous: 121,700 nurses in Study One, and 16,671 nurses in Study 2.
The two time spans really were massive, maybe not massive in geologic time, but certainly massive in biologic time. The first group has been followed since 1976 (Number 1 song of ’75: Silly Love Songs by Paul McCartney and Wings.) The second group has been followed since 1989. (Number 1 song of ’89: Look Away, by Chicago. Was I asleep that year?)
The nurses in both enormous groups were asked to complete a questionairre about their personal history of stressful events. After they handed in their questionnaires, they went about their normal lives. A minority of the nurses who completed this questionnaire would later find that their normal lives would be disrupted by MS.
When investigators compared the answers from the group of nurses who were destined to develop MS with the answers from the nurses who were destined to remain healthy, they found no significant difference in self-reported levels of stress and/or stressful events.
I feel so vindicated.
There are so many subtle and not-so-subtle ways of blaming of victim. With my MS diagnosis came the injunction to avoid stress. I don’t necessarily think that was an entirely bad piece of advice, although, under the circumstances, it wasn’t particularly easy advice to follow. No one ever outright accussed me of creating my disease state because I’d been under too much stress. That was entirely my own inference. I’ve been blaming myself ever since.
Since my diagnosis, I have made it a priority to avoid stress. I’ve done plenty of yoga. Not enough meditation. When I’ve gotten pissed off, I have, on occasion, actually slowed down long enough to count to ten. I am, without a doubt, a happier, more even-tempered person than I was before my diagnosis. I might not have made such an effort had I not believed it would contribute to my health.
So I can’t say I have a quarrel with avoiding stress. I have a quarrel with the notion that a person with MS has a stronger obligation to finesse stress than a person without MS.
I would like to propose that there is something intrinsically wrong with the assumption that multiple sclerosis is a flawed emotional response, rather than a flawed immune response.
I’ve had MS since at least 1988 (Faith, George Michael). I am a study of one. I am lacking a control group. As both investigator and subject of my own disease, I have had a “massive” amount of time to explore the complex interplay between multipe sclerosis and stress. For what it’s worth, this is what I have observed. Stress is not the only response that can trigger MS symptoms. Any old emotion will do. Joy, for instance. I will never forget the excruciating pain that shot through my legs when I learned that a family friend would be lending us his apartment in Paris.
If I want to eliminate pain from my life, does that mean I ought to eliminate joy?
I don’t think so.
I’d like to propose a paradigm shift.
Let’s stop fussing over eliminating stress. Let’s focus, instead, on eliminating MS.

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