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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Saving Face

“God has given you one face, and you make yourselves another.”
William Shakespeare
Act 3, Scene 1 of Hamlet

I knew I was in trouble before I opened up my eyes this morning. I could feel that my eyelids were swollen before I attempted to wrench them apart. A trip to the mirror confirmed what my senses implied. My upper eyelids were elephantine. Worse, there were tender red patches beneath each eye. Worse still, tonight I’m scheduled to sit in front of a hundred or so paying audience members with a spotlight shining on this problematic face. Worst of all…it’s kind of my fault.
I write, “kind of,” because last night, when I applied my makeup, I hadn’t realized the potential for this consequence. I write, “my fault” because my neurologist had given me the opportunity to take an all-expense paid trip to the National Institutes of Health, (NIH) in Bethesda, Maryland, and get my rash seen by a dermatologist there. At the last minute, I’d chickened out, and had the NIH cancel my flight, because on that particular morning, my skin didn’t look so bad, nothing a little concealer couldn’t fix. I couldn’t stand the thought of flying all the way to Bethesda over a couple of little scaly patches that could be covered up with concealer. Believe it or not, I thought I was saving face. I couldn’t stand the possibility of being regarded as a hypochondriac.
Yeah, right. That hypochondriac option has been out for decades. Who did I think I was fooling?
I’m going to have to back up a bit. I’m going to have to be straight with you about a thing or two.
Starting with this: I set up this blog to share my experiences on an experimental medication for multiple sclerosis, DAC HYP. It’s only now that I notice that I’ve underplayed…as in, possibly haven’t mentioned…that I’ve experienced a side effect. That side effect is rash.
You might well ask, why not?
Here’s why not. I’ve got multiple sclerosis (MS) a horrible, and so far, incurable, degenerative neurological disease, and DAC HYP is the only medication I’ve taken—and I’ve taken plenty—that has actually served to stop the disease progression.
That’s pretty significant.
Rash? As side effects go, rash just hasn’t seemed that significant.
To put it into context, a potential side effect for a competing drug, Tysabri, is sudden death. So, yeah—rash. What of it?
I’d rather have a rash I can see than a brain lesion I can’t see. The choice to take the medication, and bear with the side effect, has been a no-brainer, at least for me. For a while there, I thought that anyone who saw things differently must just be more brain damaged than I am.
Two things have happened since I’ve started this blog that have changed the way I view the risk/benefit analysis of taking a drug that stops MS, yet causes rash.
Thing One: after years and years and years on this drug, I finally did get one—and only one—new brain lesion. And still, as far as I can tell, that’s a phenomenally good result if you compare the efficacy of this drug to that of any other MS drug out there. I’ve been told this one lesion had the good grace to show up in a “silent area.” I don’t agree that the damage was silent—I felt pretty horrible for a while there—but in truth, I’m feeling all right now.
Except for—
Thing Two: the rash has gotten worse.
Way worse.
When the rash first showed up—I believe that happened around the time the medication changed its formulation—it appeared on the inside of my hand; a nice, innocuous spot. No one was too likely to see it. And that was important to me. Some people call MS an invisible disease. I like it’s invisibility, thank you very much. MS only stays invisible if it isn’t allowed to progress.
The rash itched. I applied hydrocortisone. It went away. And then the rash reappeared, on my face of all places. A place everyone was likely to see. And that made the rash something I had to…um…face.
I managed to not face it.
I had a solution. I used a cosmetic. A simple concealer. Perhaps if I were a man, and not in the habit of putting on makeup, that move would have felt like a big deal. But I am a woman. Most of us women are all too familiar with, shall we say, putting our best face forward. (See: Hamlet.)
So yes. I wore concealer over my rash every day. Even on those days the NIH flew me out to examine me, to, you know, see if I was experiencing any side effects on DAC HYP.
Maybe we’ve been at cross-purposes. Whenever I visit the NIH, I always strive to be mistaken for a doctor instead of taken for a patient. My most treasured moments in Bethesda are the times I (almost) get away with this, like when a driver for the NIH picked me up from the hotel and asked, “Are you a patient, or…”
I treasured that “or.” I gave that driver a big tip.
The NIH culture supports these seemingly innocuous mistakes of identity. A nurse once berated herself after she’d asked me a question about my condition in an elevator. “I shouldn’t have done that. I’m not supposed to address you as a patient in front of other people.”
I’m not to be treated like a patient. I’m to be treated like a peer. One never gets too personal with one’s peers. I’ve had one neurologist actually apologize several times during an examination, for having to touch me, for asking me to disrobe. I understood she was expressing her respect for me. But that sentiment can go too far, and actually disrupt the messy process of getting down to the ugly truth.
And it’s hard to get there. For instance, you’ve been reading paragraph after paragraph about my rash, and I still haven’t mentioned I also have scaly dry patches on the inner folds of my arms and my legs. These patches itch. But I tend to forget to mention them, not only to you, but to my neurologist. Why? Because these itchy patches are not visible to others, at least not in the winter months. I can bear almost any amount of discomfort. I just can’t bear exposure.
Which brings me to the prospect of going onstage with a rash in front of about 100 people.
I’d had other plans for this evening’s appearance. I’d planned to get a professional make-up job. I’d planned to get an elaborate up-do. I’d planned to look fabulous, like I did on opening night, just a few hours after I made that cancellation.
Life doesn’t always go as planned
When I’d cancelled my flight to the NIH and my appointment with the NIH dermatologist, my neurologist had suggested I quit wearing make-up. After opening night, I complied. As of last night, my face was repaired, just in time, I thought, for me to take the stage again. Thinking the problem was over, I’d applied a little makeup before going to a concert. We know how that turned out.
This morning, I cancelled my make-up session. I didn’t want to make my elephant face any worse. I did not cancel my up-do.
And then I went to yoga. I’m so glad that I did.
Our teacher, Sharon, shared a passage from a book in which yoga instructor Sianna Sherman answers the question, What’s the best advice you’ve ever gotten?
Sianna answers, “Inner body bright,” a phrase she’d picked up from her teacher, John Friend. Sianna explains that this phrase is “his way of saying ‘It doesn’t matter what’s happening on the outside. No matter how fierce and intense and up against ourselves we feel, if we tap into that place—the place that yoga guides and invites each one of us to—we’ll find that our essence is bright and that our inner freedom is fully present.’ Often, it’s our outer freedom that’s compromised by own mind. We say: ‘Oh I’m not free’ or “I’m a victim, I’m not empowered. Or, ‘This happened to me…’ And then we start to close down. And that’s easy to do, but if we go inside and wait a minute, there’s this inner freedom that’s never compromised; there’s this inner light that’s always true. So you say to yourself, ‘Inner body bright, let me melt the outer body, melt all the crazy stuff that’s happening into the fire of my heart, into that inner light, and then I’m going to stand tall in this light and keep going, no matter what.”
As it happened, that message was exactly what I needed to hear to muster the courage to get onstage with a rash, and without the makeup. When I sit in the spotlight, I somehow doubt I’ll be whispering to myself, “inner body bright.” But I did get the message there’s more to me than meets the eye.
I have lived a long time. I have sported many appearances. I have been a cute little girl, a wince worthy adolescent. I’ve been a woman in a wheelchair. Last week, just before my opening night performance, when I was the lady with the fabulous updo, the owner of an upscale restaurant rushed up to my beautiful family, and asked, “Where do you come from?” in awestruck tones, as though he expected us to answer, “We have descended from Mount Olympus.” That night, it didn’t feel like a challenge to take the stage.
Tonight I’ll have to give the audience some credit. I’ve cancelled my up-do. I won’t apply concealer. I’ll see if I can summon up enough inner beauty to outshine the rash. (The swollen eyelids had calmed back down.) I am, after all, performing for trueTheatre. The audience expects me to be vulnerable. What better occassion to take that risk?

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.

Visualization 3.0

My third draft of the Visualization essay, with thanks to Jeff Groh for coaxing out another thread:

For all my adult life, I’ve done my best not to be defined by multiple sclerosis (MS). It’s easiest to escape other people’s pity, and other people’s judgments, if they don’t know I’m disabled in the first place. Because I have relapsing/remitting MS, most of the time I can still get away with passing for a Normal. But only to the untrained eye.
No matter how gracefully I walk into a neurologist’s office for my annual evaluation, the dreaded heel-to-toe test invariably punctures my façade.
As soon as I place one heel directly in front of the other foot, I start to sway. My arms float up, like a gymnast…a gymnast on the Titanic. I tilt toward the left. I regain my balance…for one brief hopeful moment. I tilt toward the right. My legs start to buckle. Then twist.
It’s all very suspenseful.
Inside my atrophied little brain, I’m reminding myself of all these tricks I’ve been taught at yoga. I press into all four corners of my front foot. I root down into my tail-bone. I lengthen my spine. Oh yes. I breathe.
I lift my back foot. Gently swing it around my front foot. Start to set it down…
Oops.
Not again.
I tilt toward the right. A little too far. I break my fall…by breaking out of heel-to-toe.
Inside my atrophied little brain, I’m thinking that losing my balance is all my fault. I wasn’t…yogic enough. I didn’t make the right mind-body connection. Of course! Mind-body connection! Why didn’t I think of it sooner? What I should have done was visualize myself walking down the hallway.
Visualization. That’s the ticket.
I request another try.
This request typically inspires a panic.
“Oh, no, no, no. That’s fine. You don’t have to do that one over. I’ve seen enough.” And I wind up feeling like an out-of-work actor who has just asked for a re-try on a crappy audition.
The first time I took the heel-to-toe test, I made a lame joke. “I guess my tightrope walking days are done.” The joke fell flat. My stand-up comedian days were dead-on-arrival. Fine. I don’t want to play the role of the wisecracking patient with multiple sclerosis. I don’t want to be in that sitcom. Or even on that channel. I’d rather be on the yoga channel, floating two feet above the gleaming wooden floor without even noticing, a tiny, enigmatic smile on my placid face.
Yeah, right.
As soon as I got diagnosed with multiple sclerosis, I got it into my head that I could fight off the disease by learning yoga. My first yoga instructor told me I was being unrealistic. That was sixteen years ago. A lot of people with MS don’t last this long without ending up in the wheelchair. Maybe I’m still walking because I have a more mild form of the disease. Or maybe I’m still walking because of yoga.
I wish I knew. I just can’t say. I don’t have a control group; a clone or a twin sister with multiple sclerosis who thinks yoga is a complete waste of time.
What I can say is that my expectations for my balance are consistently higher than my performance in the heel-to-toe test.
My performance in my normal daily routine can be fairly convincing. I pass for a relatively fit healthy woman at least 90% of the time. In public. Before 8 pm. But still. I’ve got a good façade going. I’m fond of it. I don’t want that façade punctured. Which is why I don’t like the heel-to-toe test. Not one bit.
I never thought I could ever meet a person who could make my objections to the dreaded heel-to-toe test seem petty. That was before I met Dr. X.
I wasn’t supposed to be meeting Dr. X in the first place. My appointment was with Dr. Y. It so happened that Dr. Y was running behind, so she sent in a resident. Into the examination room wheeled…a black man…in a wheelchair. To see me: a white woman who felt irked every time she was asked to take the dreaded…never mind.
The instant I saw him, I realized I was operating on a cruel assumption…the assumption that losing my balance was a failure of my willpower, rather than just a manifestation of a cruel disease. I would never assume that this neurologist was a failure for being in a wheelchair. Why then, did I consider myself a failure for flunking heel-to-toe?
When Dr. X had me take the heel-to-toe test, I failed it, as usual.
But this time, failing the heel-to-toe test felt fairly privileged. At least I wasn’t stuck in a wheelchair. Dr. X would trade places with me in a flash.
Or would he?
Was Dr. X’s life really all that bad? Is mobility, or lack thereof, the decisive factor in anyone’s quality of life?
As we chatted afterward, I came to see that Dr. X’s life was actually pretty good. He was nearly done with medical school. He was on the verge of a lucrative career. He had a job lined up for him in his home state, where he could live near his beloved family of origin. His upcoming move wasn’t all he was looking forward to; he was getting married in a few weeks. His honeymoon plans included snorkeling in the Caribbean.
My atrophied little brain thought it appropriate to mention a book I’d just read, The Body Has a Mind of Its Own. I enthused about the data showing that visualization could improve sports performance, and shared my plans to visualize walking down my staircase without using the banister.
Dr. X’s response? “Use the banister.”
I take it Dr. X doesn’t visualize leaping out of his wheelchair. Or passing heel-to-toe tests. Dr. X is more focused on what his brain and his body can actually do. I’ll be the first to concede, his brain and his body can do quite a lot. So much for visualization. Maybe there’s something to be said for looking around, and seeing the world clearly. The world is a beautiful place, from any perspective. I bet the world looks spectacularly beautiful while snorkeling in the Caribbean.
Altogether, I left my examination with Dr. X a little less fearful, and a lot less judgmental, about the likelihood of my ending up in a wheelchair. I figured I was done freaking out about flunking heel-to-toe.
The funny thing is, the next time I took the heel-to-toe test, I did pretty well. When it was time to begin, I looked down the hallway, and thought, screw visualization. But some habits die hard.

I automatically deployed those tricks I’ve learned at yoga. I rooted down into my tailbone. I lengthened my spine. I breathed.
I pressed into all four corners of my front foot. I lifted my back foot. Gently swung it around my front foot. Set it down…
I didn’t tip.
I just kept on going.
One step. Two steps. Three. Four.
One foot in front of the other. Like any Normal would do it. Five steps. Six. Like any Normal moron. Seven.
My legs buckled. I swayed.
Eight.
I had to break out of it, or fall.
Old habits die hard. I called to my neurologist, “Sorry!”
And felt instant self-loathing.
My neurologist tilted her head. She looked puzzled. “What do you have to apologize for?”
Exactly.
Would Dr. X apologize?
I don’t think so.
“You’re right.” I agreed. “I have nothing to apologize for. So I flunked the heel-to-toe test. I have MS.”
She was still looking at me funny. “Actually, you didn’t flunk it this time. Your score was perfectly normal.”
Normal! Precious Normal!
That was just what I wanted, right?
Instead of feeling satisfied, I felt chagrined. I will only truly pass the heel-to-toe test when I don’t define myself by the results.