Full Speed Ahead on MS Diet

After twelve weeks of anticipation, I finally learned which MS Diet I would be assigned for the duration of the study.

And the winner is…

confidential, at least until I complete the remaining six months of the trial.

I agreed to this stipulation, just as I agreed to injesting certain supplements, to saying yes to certain foods, to saying no to others. A clinical study is a group endeavor. Like any group endeavor, it comes with the perk of getting group support. Observe the above photo, in which I effortlessly glide above the lush tree canopy of the Arenal Volcano. Am I alone in this picture? Only because of how it is framed. A tico named Aaron suited me up, belted me in, and sent me on my way. A tico named Pépé was waiting for me on the other side. And a whole bunch of brave souls I never did meet set this whole contraption up in the first place with some fishing line and moxie.

My husband went ahead of me on the zip line. Unbeknownst to him,  I took some comfort in lighly touching the vibrating line as I watched him glide to the other side. I take no small comfort in having my husband accompany me on this MS adventure. I am grateful, too, for the many friends who have shown support and interest, and to my family of origin, who are all set to eat according to the diet when I fly in to visit them on Sunday. I do not take this challenge on alone.

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Dump Him

Mother’s Day, 2012

“If you want to know how a guy is going to treat you down the road, take a look at how he treats his mother. If he’s respectful of his mother, he’ll be respectful toward you. If he’s a jerk to his mother…you’d better dump him. Fast.”

My mother’s guidelines were intended to direct me to a suitable marriage partner. I applied them accordingly, and married a guy who adored his mother. That was twenty years ago. My mother’s advice proved so effective, I thought I’d never have the need for it again.

This summer, I was given a rare opportunity to apply Mom’s precepts to a relationship in an entirely different sphere. The man in question had done some business with my lady-parts, but that did not make him a potential romantic partner. The man in question was my urologist.

When I’d met the urologist in his clinic, I’d been dressed in a johnny coat. He’d been dressed in a suit and tie. His old-world formality, his swarthy complexion and his slicked-back, jet-black hair reminded me of my dear departed Grandpa Blanco. But despite the family resemblance, deep in my heart I didn’t trust the guy. I thought he was a show-off. He seemed more interested in impressing me with the latest gee-whiz treatment than in treating me appropriately.

A relationship with a doctor ought to be strictly professional, not personal, so I put whatever personal reservations I might have about him to the side. Yet a nagging voice inside me wondered if perhaps this man’s showmanship might lead to a less than desireable outcome. I was on the fence about seeing him again, or pursuing his “cutting edge” treatment, in part because I didn’t want to go through the trouble of shopping for a new urologist, and in part because mere intuition didn’t seem like a reliable measurement of a doctor’s professional aptitude.

As fate would have it, my intuition would be proven correct, luckily without the messy consequence of an undesired clinical outcome.

In what would be my last encounter this urologist, I was dressed in street clothes, and he was dressed, as always, in his suit and tie. I was carrying a parcel, a bright silk dress I’d purchased off the $50 rack in the back of the shop, which was nestled in the heart of the self-proclaimed “largest bridal district in North America.”
We both did a bit of a double-take, as sometimes happens when you run across a familiar person in an unfamiliar context. My husband and son arrived at the shop, having finshed their task of getting measured for tuxedos across the street. I introduced them to my “doctor” without spelling out his specialty for all the assembled would-be brides and bridesmaids to hear. And then the explanation for the urologist’s presence in a bridal shop became clear. A little old lady hobbled over to us on the arm of a lovely young college girl. The urologist introduced us to his daughter and his mother, who had just flown in that morning from Iran for a family wedding.
I couldn’t help it—I shared my delight at the bargains on the fifty dollar rack. “You couldn’t buy this much silk for fifty bucks! It’s Dupioni.”
As it turned out, the urologist knew all about the $50 rack. They were only there for the bargains. As nothing on the rack “carryies her size,” the urologist was planning on driving his mom to Goodwill to peruse the dresses there.
Goodwill? I wondered if his shopping plans weren’t a bit labor intensive. Why not pay full price at one of the 250 bridal shops within these scant two blocks? Hadn’t the urologist’s mother already had quite a day, flying all the way out to our fair midwestern city from Iran?
“She’s made of iron. Look at her.”
At this point, our party of two families had moved onto the street. My husband was halfway down the block, in a hurry to get to the car so he could deliver me from this unpleasant awkward encounter here in bridal shop purgatory. My son was halfway between his dad and his mom, tarrying in case I needed an arm. The urologist was keeping up with me, while the urologist’s mother, that stalwart traveler, was shuffling slowly but determinedly past the fifties-era storefronts, unaided by her granddaughter or her son.
At that moment, I made my decision. Dump him. The urologist wouldn’t wait up for his ancient mother, no matter how I tried to slow our pace. The man was too cheap to buy his mother a new dress for a wedding she’d traveled a long way to attend. If he could afford a plane ticket from Iran, he could afford a full priced dress.
My husband pulled up alongside us. My son opened the car door for his mother.
That is how it’s done.
When I waved goodbye to the urologist, I knew it was forever. The next specialist to weigh on the situation was a gynecologist recommended by my local MS doc. She told me that if I were to continue to follow the advice of that urologist, I would end up in bad shape. Not that I needed a professional opinion to confirm …Mother knows best.

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One summer night, my husband and I were sitting on a picnic bench outside an ice cream shop in one of the more precious neighborhoods in Cincinnati, as our son and his buddies from Shakespeare Camp clowned around and blew off some post-performance steam. The flavor of the outing was pure vanilla. Let’s just say none of the boys would be a shoe-in for the role of Othello.
My husband said, “I don’t feel white here.”
My husband is white. Half white. He is also half Chinese.
He spent most of his childhood in North Dakota, except for a year in Pakistan. There were no Chinese kids, or other half Chinese kids, in Grand Forks, North Dakota. There were no Chinese kids, or other half Chinese kids, in Lahore, Pakistan. Of the two cities, Lahore was by far the more racially diverse.
In North Dakota, my husband-to-be was regarded as an alien. In Pakistan, he was regarded as an American. It’s hard to guess which must have felt more uncomfortable. Even back in the ‘70’s, Americans were not exactly beloved in Pakistan.
In any case, his identity as an American pretty much evaporated as soon as he returned to the good old US of A.
Chinese Americans can tell at a glance that he’s not Chinese. Just like white Americans can tell at a glance that he’s not white.
There is one state in the union where my husband blends right in. While vacationing in Hawaii, he may be offered a local discount via a top-secret hand gesture and a knowing smile. For an hour or two, he’ll be all puffed up. And then he’ll be offered a fork at a Chinese restaurant. Deflated, he’ll be forced to ask for chopsticks.
When we moved to Cincinnati, I think things got a little easier for him. (I could be dead wrong.) Race in Cincinnati is black and white. Black Cincinnatians and white Cincinnatians can all agree on one thing. My husband isn’t black. Which means, for all intents and purposes, he’s white.
That standard generally holds, unless my husband happens to be surrounded by unfamiliar white people. Then he’s not-white. And the question hovers, usually unspoken, unexpressed, except through second glances.
“What is he?”
On this vanilla flavored outing, my husband and I talked to the other Shakespeare parents about volunteer opportunities at the arts school, about an upcoming pool party at the swim and tennis club. We did not openly mock the affluent white street guitarist playing Bob Marley. Instead, we exchanged whispers and surreptitious snickers.
After our breathless son rejoined us, my husband went off to get the car. He wasn’t just being a gentleman. That particular evening, it wasn’t physically possible for me to get up and join him for the three block walk on a mild summer night.
Once my husband pulled up in front of the ice cream shop in our Element, the gig was up. It was my turn to be the outsider. I stood. My knees buckled. Our son took my arm. My knees buckled again. Once, twice, three times more before fair Hamlet got me to the car.
I, too, have a shifting identity. For me, relapsing/remitting multiple sclerosis (MS) means sometimes I can walk, and sometimes I can’t.
What am I?
I am disabled. I have a placard to prove it.
What am I?
I am healthy. I can swim a lot of laps.
Once—only once—a man yelled at me as I walked or ran, I suppose with undue vigor, away from my placarded car.
“You’re not disabled.”
What does he know?
Usually, when I run from my car, I am running to the bathroom, ‘cause I have an MS bladder, and I’ve really got to pee.
Sometimes, when I see an available handicapped spot, I don’t have to pee. My legs feel just a wee bit tingly. I entertain the notion of parking further back. If there is only one empty handicapped parking space, I may just keep the placard in the glove compartment, and park somewhere less accessible. Which doesn’t always turn out to be such a smart decision. I can’t tell you how many times I have parked politely, and then felt not-so-good on my return. I have had to lean on a full shopping cart as if for dear life, my legs in excruciating pain, as I’ve pushed the cart past two, maybe three, perfectly empty handicapped parking spaces.
So much for that.
My husband doesn’t get to choose when he is perceived as white. I don’t get to choose when I am perceived as disabled.
I look disabled when I’m in my wheelchair.
I look fit when I swim my laps.
If I didn’t swim, if I didn’t persistently lift very minimal weights, I would not be at all toned. I would not be able to blend right in with all those other white parents from Shakespeare Camp, if only for a while.
Oddly enough, my husband still hasn’t gotten over caring what other people think about our parking our car in a handicapped spot. He will often run around the car, and give an ostentatious show of offering me his arm, whether I need it or not. It’s like he’s broadcasting, “See, people, my poor wife is handicapped. That’s the reason why we’re using this spot.”
He clearly feels the pressure of the unasked question.
“What is she? Is she really handicapped?”
Screw that. I’m not dead yet. Don’t put me in box.
And while you’re at, screw, “What is he?”
Race is a construction.
So is disability. All of us have an uneven distribution of abilities. These attributes will wax and wane over time. We might as well relax about affixing any labels. They all peel off eventually.
What am I?
I am.
Who are you to ask?

Power Outage

Six days and six hours after Hurricane Irene blew out the power, a friend in Connecticut finally got her electricity back. She posted on Facebook that she’d started the dishwasher and the washing machine. She wrote: “I have to say it wasn’t entirely a negative experience. I’m actually happy to have experienced it.”
I have a hunch I know what she means. I’ve lived through a few power outages. They transform the humdrum household into an exotic locale, where previously automatic tasks require improvised solutions. With every reflexive, futile flip of a light switch, we are reminded of how much we ordinarily take for granted. We feel entitled to our electricity, darn it. And then we adjust. Instead of cursing the darkness, we light candles. We grill all the meat. We gather together. We entertain each other. We tell stories. We sleep deeply. The remaining food rots. The dirty clothes pile up. We understand the power company is working tirelessly to fix the problem. We wish they’d hurry the hell up. We understand it is useless to complain. We complain. We wish everyone else would quit complaining— we’re all in the same boat. We’re all in the same boat—and that’s kind of cozy. The power comes back again. We are oh so grateful for a good five to ten seconds. Then we scatter—one to load the washing machine, one to buy the milk, one to download distractions. Normal life resumes, with all its quotidian conveniences and isolations.
An attack of multiple sclerosis is also a power outage. The brain blows another fuse, and a function is lost, maybe for a few days, maybe for forever. A previously automatic task requires an improvised solution. I feel entitled to cross a room on my own two legs, darn it. And then I ask for assistance. I take my husband’s arm. My son pushes the wheelchair. The family draws closer together. We see ourselves as problem solvers. We wonder when the power will come back. We understand the pharmaceutical companies are working tirelessly to fix the problem. We wish they’d hurry the hell up. We understand it is useless to complain—we don’t know anyone in the same boat. We prepare ourselves to live this way forever. “This way” doesn’t stay this way for long. It gets better. We are oh so grateful. Or it gets worse. We adjust.
We never take my relative health for granted. No one understands the vast complexity of the central nervous system better than a person whose central nervous system is constantly on the fritz. The basement fuse box presents a laughably simplified metaphor. We are only dimly aware of the multitude of problems that could yet occur, and we are fully aware that such ignorance is bliss.
After our last multi-day power outage, I proposed that maybe our family could consider off-the-grid Sundays. By off-the-grid, I envisioned something sort of fuzzy and candlelit, nothing as hard-core as an unplugged refrigerator, although an unplugged stove, and the consequent necessity for Thai take-out, seemed perfectly reasonable to me. Needless to say, I was met with immediate opposition.
There’s no need to opt for hardship. Hardship will come to us. It’s too bad we can’t fully rejoice with every flip of an operative light switch, or with every synaptic leap in our central nervous system. But we can’t. If MS relapses have any benefit at all, it’s that I keep getting new chances to recover, whether fully or partly. I get to be aware of the health I’ve still got. It’s not often that I’m not in pain. I know, then, to celebrate its absence.

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.