Reality Check

Early this morning, Dr. Z. said softly, “You have a very severe case of MS.” Dr. Z. is the most dapper neurologist in town. He was wearing yellow wool pants and a pastel striped tie and fancy orange loafers, the kind with the little pinholes. I’d dressed up in a floral dress and a purple scarf and a white summer sweater with pearly buttons. My hair was back behind a perky blue and white polka dot hair-band. The healthy façade was futile. We were looking at the MRI scans of the brain behind the hairband.

I couldn’t help but notice his use of present tense. I always say, “I used to have a severe case of MS.” Because my multiple sclerosis has been fairly well controlled since I first went an earlier formulation of the drug that is now being released as Zinbryta. I am able to live a full life; I do meaningful work, I exercise, I spend lots of time with friends and family.

“You have scores of lesions throughout your brain, and significant brain atrophy.”

It wasn’t news that I had a lot of brain lesions. For over two decades, MRI’s have revealed those lesions festooned throughout my brain with the all the density and regularity of Christmas tree lights.

But brain atrophy?

No neurologist had ever said the word, “atrophy.” Most doctors have emphasized the positive—how I present in person rather than how I present via MRI. I’m used to hearing, “You look great!” from neurologists and lay people alike.

Please don’t conclude that Dr. Z. was being negative. He wasn’t. He was being honest. Because I’d forced him.

What kind of patient goes on experimental drugs? The kind of patient who likes to experiment. And since Zinbryta is officially on the market, and I am no longer taking it for research, I’ve been restless to see what new way I could approach my disease.

I’d been telling Dr. Z. about how once, while at the NIH in Baltimore, I’d met another MS patient who’d also been on the original formulation of Zinbryta, way back in the days when it was delivered monthly through IV infusion instead of through a slender needle. As we two lab rats hung out by the MRI machines, we’d compared notes on the two formulations, and had agreed that while both versions of the medication were effective in stopping the progression of the disease, the earlier version had felt like it had shrunk the MS activity to insignificance.

Now I wanted to know, was there any chance Dr. Z. could prescribe the infusion?

There was not.

I then asked about the diametric opposite treatment extreme; some people I admired were treating their MS with diet and exercise alone. I have a great diet and exercise regime; was it possible that my lifestyle was responsible for my apparent good health? Could I possibly experiment with a medication vacation, once my supply of Zinbryta ran out?

And that’s when Dr. Z. said gently, “You don’t have any brain left to experiment with.”

Sometimes the truth hurts, at least for a moment. But in my experience, the truth is always more manageable than any lie. I thanked him. It was actually comforting to hear confirmation of what I feel, and conceal, every day. That every day I perform a thousand little miracles just to make it through.

Did I cry? Yes. In the elevator, a little. And one big sob in the car. But I was calm through the appointment.

Dr. Z. observed that medications alone were never sufficient for MS treatment. The patients he’d had on the best medication available to him still got MS relapses if they continued to make poor lifestyle choices.

We agreed that I had to stick to good lifestyle choices…and to the good medication that has worked for me thus far. I have (present tense) a very severe case of MS. Thanks to Zinbryta, I also have the luxury to expect that the next time I see him will be for a follow up appointment in three months, and not in a state of emergency during the MS relapse I can’t afford to endure.

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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?

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.

MS Mermaid

My son requested that I tell you the story of what happened the last time we were in Hanauma Bay:

Once upon a time, on an island not so very far from the equator, Mermaid opened her sea blue eyes and saw she was in trouble.

Earlier that morning, Mermaid had grown restless as her husband, Landman, and their son, Halfland, fumbled around the coral in their rented flippers. She shot off after a brilliant green parrotfish, leaving Landman and Halfland to doggie paddle in the shallows of the bay.

Hour after hour, Mermaid frolicked with bright and beautiful fish. She witnessed many wonders. But as time went on, more and more blubbery white Surface Creatures came crashing across the coral reef. As the bay grew crowded with  Surface Creatures, Mermaid grew restless yet again. She missed Landman and Halfland. She wanted to be with them, even if that meant climbing out onto the sand.

Mermaid was as clumsy on the silver sand as Landman and Halfland were clumsy in the water. Mermaid fumbled as far as a little palm tree, and then plopped down to shelter in its meager shade.

Mermaids never nap. But on this day, Mermaid’s frolicks must have worn her out. When Mermaid awoke, she was no longer lying beneath the slender shadow of the little palm tree. The shadow had shifted.

Mermaid was no longer sheltered from the Sun. And Mermaid was no longer alone.

A group of  Shade Seekers from the Far East were noisily unfolding their straw mats along the new angle of the palm tree’s slender shadow, chatting away as if Mermaid did not exist.

Mermaid did not understand the Shade Seekers’ culture, or the Shade Seekers’ language, but she had to be grateful for their bizzare proximity, and their incomprehensible chatter. Had they not been so close, had they had not been so loud, the Shade Seekers might have not have waked her. Had Mermaid remained asleep beneath the Sun, she may have napped her way smack into oblivion.

You see, all mermaids’ powers melt away in the heat.

Mermaid looked down at her lovely legs. She knew the heat of the Sun had rendered them as useless as a mannikin’s legs.

Mermaid gazed longingly at the sparkling sea; if she could only make it back, she would be safe from the heat of the Sun.

Mermaid turned to the Shade Seekers. The Shade Seekers did not meet her sea blue eyes. You see, Shade Seekers do not believe in mermaids. These simply pretended Mermaid did not exist. And even if Mermaid were to somehow convince the Shade Seekers that she did indeed exist, she still had no common language to explain her predicament.

All the while, the Sun beat down relentlessly. If Mermaid didn’t act soon, she’d lose control of more than just her legs; her sea blue eyes would cease to see.

Mermaid was feeling desperate. Her lovely legs couldn’t take her to the water. The Shade Seekers wouldn’t take her. Mermaid decided on a course of action. Since she could not walk to the water, she would have to roll there.

I will tell you a secret about mermaids. Mermaids are like you and me. They can not abide to lose their dignity.

Mermaid imagined that the Shade Seekers would start seeing mermaids as soon as they saw one rolling in the sand. That would give those Shade Seekers something to talk about.

Just then, Mermaid heard two beloved voices over the din of the Shade Seekers’ chatter.

“Mermaid!”

“Mommy!”

Landman and Halfland were running up the beach toward their lost Mermaid. They were so happy to see Mermaid, they forgot to be cross with her for swimming away. They understood immediately that Mermaid wouldn’t be going anywhere, not without their help.

Now, this was no ordinary bay, but rather, the crater of an eroded volcano, one that had sunk so low that the sea could sneak inside. Landman proposed he carry Mermaid to shelter on the crater’s rim.

The crater’s rim was a long way up. Mermaid wanted nothing more than to return to the water, and to her natural form.

Landman loved Mermaid. Landman wanted nothing more than for Mermaid to be whole again. Instead of carrying Mermaid to the crater’s rim, he carried her back into the water, and released her alongside the battered coral reef.

As the family expected, the ocean worked its magic on Mermaid. She was soon swimming as though she had never been pinned by the heat of the Sun. Landman and Halfland were happy to see their Mermaid restored, yet the entrance to the path to crater rim remained a great distance away. Mermaid refused to be carried there, and they all three doubted she could walk.

Halfland proposed they all swim toward the entrance. But Mermaid knew swimming would not be much fun for the boy. She urged Halfland and Landman to walk there, instead.

After all that had happened, Halfland and Landman were reluctant to leave Mermaid. But Mermaid had learned her lesson. From now on, Mermaid would not be distracted, no matter how colorful the fish. She would keep her sea blue eyes on Landman and Halfman, for those two were more precious to her than all the fish in the sea.

Landman and Halfland sloshed back to the shore, and Mermaid swam along in the sea. But they were still together, all three. They proceeded in parallel toward the path to the crater rim; Landman and Halfland walking on the beach, and Mermaid swimming in the bay. Mermaid’s gaze did indeed remain fixed upon Landman and Halfland. Those two were the most soothing sight her sea blue eyes could ever see.

Not even the Shade Seekers can tell you how Landman and Halfland managed to get their Mermaid to shelter on the crater’s rim, or how Landman, Mermaid, and Halfland have managed to stay together, happily ever after. There is much about a mermaid that must remain a mystery.

Commuter Drag

IMG_4232I am commuting today to the NIH for my monthly dose of MS medication. Look around the airport. You won’t pick me out. I am streamlined, like every serious commuter. I know which security line is actually the shorter one. I know the latest TSA regulations. I don’t flinch at the full body scanner. My boots are easily unzipped.
My red Chrome messenger bag is a red herring. I haven’t straddled a bicycle in over a year. Not since I kept falling off. But I can look like I still ride a bike. I can pass, at least for the outgoing flight.
I am not the one fumbling with her shoelaces, or the one in the wheelchair. I am not the one in that golfcart-like vehicle. I am not the one boarding the tram.
I am the one strutting to the gate.
I am not the one on the people mover. I am not the one on the elevator.
Whenever possible, I am not the one on the escalator. Whenever possible, I am the one on the stairs.
I am not the one sitting in the handicapped row.
I am not the one being offered the opportunity to pre-board.
I am the one who doesn’t look up as boarding is announced, who continues writing her notes by hand. No one needs to know I am a creature with brain shrinkage. That I’ve left my computer behind in too many taxis, too many times.
No one needs to know that on the way back, I may just be the one in the wheelchair, or the one in the golf-cart like vehicle. I may just give in and take the tram. I might take the elevator. I might accept an offer to preboard.
I am one of you. Until I’m not. Then I am of one them.
I am one of all of us. We each carry baggage. We each carry pain. Sometimes it’s visible. Sometimes it’s not.