Today a specialist asked me if I had a certain personality.
I may have responded with an arch look.
He rephrased the question. “How would you describe yourself? Your personality? ”
I knew where he was going with that line of questioning. He wanted me to confirm his at-a-glance hypothesis that I am a Type A personality. Apparently The Specialist subscribes to the popular theory that Type A personalities are more prone to autoimmune diseases like multiple sclerosis (MS.)
“Has anyone ever told you that you are a control freak?”
He has nothing to gain from this line of reasoning. Think about it. Of the two of us, who is more likely to have a Type A personality: the guy with the medical degree, or the gal with the MFA?
I countered, “I think that’s just blaming the victim.”
I don’t (necessarily) have a bad personality. I just have a bad disease.
The Specialist kept describing the Type A personality. “Do you set goals for yourself?”
“Sure I do. And maybe I’ll accomplish all of those goals in a day, and maybe I’ll only accomplish only one. Or none at all. My body has the final say.”
“So you’ve reached Acceptance.”
Acceptance. I didn’t know what The Specialist would think about that. Acceptance doesn’t carry much of a cachet among Type A personalities.
I ventured, “I don’t know if that’s good.”
Though of course, I do know that it’s good. In my case, Acceptance is reasonable. All my MRI’s in the past four years have come back showing no new lesions. It’s appropriate to reach Acceptance when you’re on a drug that actually works.
The Specialist was happy to hear about the efficacy of the drug, even though he couldn’t find “daclizumab” or “DAC HYP” on his portable information device. (I probably spelled it all wrong.) He seemed more frustrated that he couldn’t shoehorn my personality into his Type A hypothesis. He kept trying. He listed high achievers who had autoimmune diseases. Montel Williams’ MS. Michael J. Fox’s Parkinsons.
I could think of one other thing these guys had in common, besides autoimmune diseases. “These guys are both celebrities. You kind of have to be a high achiever to become a celebrity.”
Whereas, you absolutely don’t have to be a high achiever to become a patient with MS. It’s just not that simple. I know plenty of high achievers. And most of them are not celebrities. Most of them don’t have an autoimmune disease, either. Nor do they deserve one.
I don’t deserve one, either.
“Do you think you used to have a Type A personality, back before your diagnosis?”
Back before my diagnosis, I’d majored in philosophy. What kind of Type A personality would be stupid enough to major in a thing like that?
The kind of Type A personality who thought English majors weren’t thinking hard enough.
Fine.
Have it your way, Specialist.
He proposed, “Some people think meditation could be helpful for people with multiple sclerosis.”
So now he’s “some people.”
“Meditation could be helpful for anyone.”
Touché.
I’m not making a very good case for my being a Type other than A.
The Specialist is an Ear, Nose, Throat guy.
He finally got around to asking me to stick out my tongue.
“You know, thousands of years of Chinese medicine has taught them to diagnose an entire person with one glimpse of the tongue.”
Diagnose?
Or simplify?
I had my tongue sticking out, so I couldn’t reply. And anyway, I didn’t think of a good comeback until after I left the examining room. Here it is: “For hundreds of years, Gypsies have said they can see a person’s fate with one glimpse of the palm.” You don’t see me rushing out to consult any gypsy. I consulted my half-Chinese husband instead. My half-Chinese husband said my sharp tongue was one of the first qualities he loved about me.
So maybe there is a perk to being Type A, after all.
The Specialist had said, “Things happen for a reason.”
I agree with half of that statement. Things happen. But If you’re going to look for a reason, don’t stick your tongue out at a Chinese guy, and thrust your palm onto a gypsy’s lap. That’s just silly. None of us are so special we should waste our breath whining, “why me?”
I may have a strong personality, but I don’t think it’s so strong it could cause a disease.
While I was waiting for The Specialist, I was reading Population 485, a delightful book by a Michael Perry, a volunteer fireman. He writes, “We are creatures of myth, hungry for metaphor and allegory, but most of all, hungry for sense.”
Sometimes our hunger for sense has us gobbling up nonsense.
Perry writes, “Surely, we tell ourselves, we can’t die just because we hit a patch of pebbles on a curve.”
But as Perry clearly illustrates, we can and we do.
We identify with our problems, with our illness, with our fate, instead of detaching, and researching cause and effect.
I think I’ve figured out why I contracted MS. It had nothing to do with my personality, and everything to do with my intestinal parasites.
Surprised? So was I.
It’s a wild, random world. (Is this the observation of a Type A control freak?)
Namaste.
Month: July 2011
Heat Wave
Interior Night Scene. Concerned Husband sits in profile at metal desk, stage left. He is wearing a white T-shirt and bright red Patagonia boxers. His face is illuminated by the glow of a gigantic iMac. Wife with MS is seated on leather couch, stage right, facing audience. She is wearing a pale blue cotton nightshirt. Her brand new Malcolm X style bi-focals are illuminated by the MacBook open on her lap.
Concerned Husband (still facing iMac): “We should look into getting you one of those refrigerator vests….”
Wife with MS (still facing open MacBook): Silence.
Concerned Husband (still facing iMac): “I know you can hear me.”
Lights dim.
The Answer
In the past few months, I’ve made the same complaint to every health care professional I meet. I report that my range of abilities is shrinking. That I don’t feel as fantastic as I used to back when I first went on daclizumab to treat the multiple sclerosis.
Year One on daclizumab, I was inspired to stretch myself to my physical limits. I was suddenly able to swim three hours a day. I could hike for an hour at a time. Every other day, I’d be off to the gym. Once a week, I’d attend an hour and half yoga class. Year One, I discovered I could stretch pretty far.
I am now in Year Four on daclizumab. I still stretch myself to my physical limits. But I tell you, those limits are not what they once were. Hike for an hour? I’m lucky to walk a few blocks. The funny thing is, I do feel lucky. But isn’t that also perverse? Shouldn’t I feel…outraged?
These days, if I decide to go to an hour and a half yoga class, that means I am implicitly deciding to write off any further physical activity for the remainder of my day. Which would be fine if I didn’t have a family. But I do have a family. My day is also my husband’s day, is also my son’s day, is also my dog’s day. My cat could care less if I walk or not, as long as I am still able pour his food. But the rest of my family is aversely affected if I overextend. They would probably prefer it if I would under-extend.
I wouldn’t want that. I’m not dead yet.
Every day becomes an experiment. I check in with my body more or less continually. If I don’t, my body checks in with me. More and more often, my body is saying, “Enough.” More and more often, I listen. I stop what I am doing. And I agree it is enough.
Is this acceptance? Or is it complacency?
I think there’s a difference. Acceptance is wonderful. But complacency is dangerous, particularly when you have a debilitating disease. You can mistake a medication for a cure. You can think you are doing enough, and by the time you find out you’re not, it’s too late.
Lately I’ve been wondering if daclizumab is doing enough.
I will whine to the nurses, or to the neurologists, “I feel like my physical range is shrinking.” I will speculate, “Maybe I don’t have Relapsing/Remitting MS anymore. Maybe I’m slipping into Secondary Progressive.”
No one can tell me. There’s no clear line to cross. What they can tell me is this: every MRI of my brain comes back showing no new lesions. How have I responded? I’ve asked to have an MRI taken of my spine. I want the whole story, even if it doesn’t have a happy ending. I don’t want to be living a lie. I want a clear answer to the question: why I do I feel I am in a long slow decline?
A very clear answer occurred to me just this afternoon. I was downtown, picking up a new pair of glasses, which happens to be my very first pair of bifocals. These glasses are totally and completely nerdy looking. It turns out my distance vision is -11.75. And all these years I thought the vision span only went to -10. It looks like the parameters for bad vision can stretch like the debt ceiling. Maybe the parameters for physical (dis)ability will stretch that way, too. And stretch. And stretch.
In the optician’s office, I thought of an explanation for this insidious phenomenon I’ve been experiencing. I am aging. That first year on daclizumab, I was still in my thirties. I’m not in my thirties any longer. Maybe the answer could be as simple as that.
Does it stop?
The other day, my husband found a cryptic message scrawled on a Post-it note by his computer: “Does it stop?”
He looked severe as he passed the note to me—so severe, I just had to laugh.
The content of the note was ominous. The form was ominous, too—the writing barely legible. Why, then, was I laughing?
Our son came rushing over to inspect the note. “That’s Mom’s handwriting.” I couldn’t argue with him. “But worse.”
Those two seemed so serious. Too serious. I tried to remember why I’d written, “Does it stop,” but nothing was coming to mind.
Two matching sets of brown eyes were fixed on me intently.
No pressure.
Does it stop? Does it stop?
Surely, I could not have been writing about multiple sclerosis. It’s been sixteen years since my diagnosis. C’mon, people. Give me some credit. I wouldn’t scribble an angst-ridden message about that.
Does it stop? I’d recently been on hold with the phone company. Had I written the note then?
Being on hold could feel interminable. But no. That wasn’t “it.” I didn’t write the Post-it while I was on hold.
Then, when?
What was, “it?”
It.
I quit laughing long enough to confess, “I don’t remember writing that.” Which merely served to ratchet up the tension. Apparently, I was not merely angst-ridden. I was amnesiac. And to top it off, I wasn’t even disturbed about being an angst-ridden amnesiac. There was the question of my laughter. Was my laughter not disturbing?
Sorry.
My son hypothesized, “Maybe you wrote it in your sleep.”
The note was indeed sloppy enough to have been sleep-written. But c’mon. I can—and do—write sloppily enough while fully conscious, as all who know me can attest.
I just didn’t buy the sleep hypothesis. But try as I might, I couldn’t disprove it. I could not recall the exact circumstances surrounding the Post-it note, which in my mind was an argument against its emotional significance. Surely, if I had crawled out of bed to scrawl a message from the depths of deep despair, wouldn’t seeing the note trigger some dark association? I was certain the Post-it had a trivial origin. Yet clearly, I was the only person in the room with that certainty.
For years, my husband has carried around this hip little black book—a Miquelrius—designated for jotting down his observations of my MS symptoms. I’ve never been tempted to peek inside. I find it all a bit… humiliating. When I’d first fantasized about becoming this man’s muse, I was thinking he might fill the pages of a very different little black book.
There is nothing remotely sexy about a long slow decline.
I could tell by the mood in the room that my husband was way past considering whether to include the Post-it note in his little black book. He was considering whether he should categorize the note as a symptom of depression, or as a symptom of cognitive loss. Both depression and cognitive loss crop up fairly often in the MS population.
I am no stranger to depression. Which is why I was pretty certain that, had I been struggling with depression, I would have been the very first to know.
Whereas, if I were struggling with cognitive loss—I would be the very last to know. Which made remembering the origin of the note all the more important. And all the more inaccessible.
The answer came to me a few hours later, while I was brushing my teeth. With my new electric toothbrush. The old electric toothbrush had made a buzzing sound every 30 seconds. It had put me in the habit of polishing every surface of each successive tooth, slowly and deliberately, so that each time the buzzer buzzed, I was exactly another quarter of the way through brushing. Four beeps equaled two minutes of another round of pristine dental hygiene. I would be just finishing the final wisdom tooth when the old electric toothbrush would emit a final, conclusive sounding buzz, and would turn off. The synchronicity had been very satisfying.
Over the years, however, brushing my teeth with the old electric toothbrush had become less than satisfying. The vibrations would cause the toothbrush head to shimmy up and off the communal toothbrush post. I quit using our old electric toothbrush months ago, preferring an old style manual toothbrush that didn’t suck up electricity or spit itself out. By the time my husband came around and bought us a new electric toothbrush set, I was thoroughly out of the habit of the two-minute brush.
Even so, I felt like the new electric toothbrush was working overtime. The new electric toothbrush beeped…and beeped…and beeped…and beeped, but I wasn’t in synch with it, like I’d been in synch with the old one. It seemed to me like this session was dragging on to be an awfully long two minutes. And then the answer to that nagging question finally came to me.
When I had written the Post-it note, I’d had a vibrating toothbrush in my mouth for what I could swear had been more than two minutes. The darn thing would just not shut off. I’d tried pressing the off button with my feeble finger. It only buzzed the louder. And vibrated more. So I’d sidled up to my strong-fingered husband as he tapped away on his computer. I couldn’t very well pull a vibrating toothbrush out of my mouth to ask him if this new fangled electric toothbrush was on a two-minute timer, like the last one. I reached for a pen. And a Post-it note.
And wrote…
author’s note: As it turns out, my husband had not posted the note in his little black book. He hadn’t been as concerned as I’d thought. When I went hunting for the visual aid, he recovered the crumpled Post-it from the trash.
Ms Lab Rat 