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.

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An Objective Answer

The first time a perfect stranger assumed my husband John was my son, I asked, “Do I look that old?”
In the awkward moment that followed, I realized I would never get an objective answer.
The second time a perfect stranger asked me if John’s was my son, I dismissed her “innocent” question as a perfect mind game.
Do I look that old?
If John’s mother were alive right now, she’d be eighty three.
I am forty-three. I am older than my husband John, but not significantly older; I’m older by a year and a half. I ought to look like I could have been in diapers on the day he was born; not like I could have spent that day stretched out on a delivery table.
How painful.
It has been suggested that maybe the issue is not that I look old, but that John looks young. John still gets carded when he buys alcohol. If I can be comfortable with looking like the mother of our fourteen-year old son, why can’t I be comfortable with looking like the mother of man who is (mis)taken for under-twenty-one?
It doesn’t bother me that John looks young. It doesn’t even bother me that I look old…as long as we’re talking forty-three years old. It does kind of bother me that Multiple Sclerosis could make me look older than I really am; it just adds insult to injury. And it really bothers me is that there is no way to objectively determine if I look my age, or if I look older than my age.
Or so I thought.
Today I sought a piece of personal property every patient is entitled to; I requested my medical record. I had recently taken a trip to a specialist, and I needed to share his discovery with the doctors at the NIH, who must keep track of every event that occurs in my body while I am on their experimental drug.
I am always eager to read the notes my doctors take. I’ve learned a lot that way. One of my past doctors was either a poor listener or a poor note taker. He’d had me down for two to three alcoholic drinks a day, whereas I’d said I might sip from two or three alcoholic drinks a month. I had the office correct my record. I am a borderline social drinker, not a borderline alcoholic, and I didn’t want to be treated as though I had the additional illness of alcoholism.
When I got the notes from last week’s visit to the specialist, I slid them in a manilla envelope, but pulled them out again before pressing the button on the elevator. By the time the elevator reached my floor, I’d read that I’d moved to this city from New Hampshire. I kind of liked the image of myself as a lady from New Hampshire. I’d be more rugged, maybe, than a lady from Connecticut. Certainly less Italian.
On the elevator, I read:
General appearance: healthy, alert, no distress, cooperative, smiling, in no acute distress, appears stated age, alert and oriented x 3
Appears stated age.
Finally. The objective answer I’d been looking for. From a professional. And not a professional bartender either. A medical professional. Medical professionals, I well know, can be trusted to get the story straight.
I stepped out of that elevator smiling, in no acute distress, brandishing my precious envelope, the objective proof that I don’t look that old. I appear to be my stated age. I feel alert and oriented x 3.