TRAP (part 2 of Ms. Lab Rat’s new adventure)

The vast lobby of Building 10 of the NIH was nearly vacant of the usual international mix of medical professionals and imperiled pilgrims, yet it felt cluttered. This majestic bastion of scientific research had been stuffed with numbered tables bearing garish gingerbread houses, presumably made by the in-patients and staff. It looked like a pop-up church raffle. I glanced past the hapless man marooned at the Welcome Desk and noted that the coffee shop was now barricaded by scaffolding. The scent of coffee had been replaced with insidious notes of powdered white sugar. I wondered if perhaps my system of always accepting the first appointment of a given span of available dates would finally let me down. We were three days out from Christmas. The speculation on the van was that the leading physicians would still be on vacation. I didn’t buy into that. I expected to see leading physicians. Then again, I’d also expected coffee.

I ducked into the area on my right to fill out the paperwork for meal reimbursements. Over the years, the reimbursement office has retained the right to perpetuate various iterations of needlessly awkward exchanges. The first few years I’d gone there, the cashier’s desk was an inch or two too deep for the cashier to actually reach the exchange window to grasp a lab rat’s ID or to pass a lab rat some cash. It added a bit of tension, a bit of comedy, to every exchange. After a few years of these capers, the cashier figured out she could use a pincer device to bridge the troublesome gap. Her victory was short lived. By my next visit, the entire office was moved. By the visit after, the “short-armed” cashier was gone.

The tradition of inventive obstructions was still in full force, I noticed. There was a sign in front of the office that receives reimbursement forms which instructed all form fillers to stand at a certain distance in front of the glass door, and further warned that those who did not stand would not be seen. In other words, Wheelchair Users, Begone.

Furthermore, the very layout of the office was designed to prevent eye contact, even with compliantly standing non-wheelchair users. The L-shaped desk for the sole employee in the office was set back and to the side of the glass door. The computer was placed along a wall at a ninety degree angle from the door, so that the occupant of the office effectively had her back to the door every time she looked at her computer. Once again, the office had been created to make it structurally impossible for the employee to do her job effectively.

I wish I could say this office is an anomaly in the NIH. It is not. There are doors in the MS clinic without wheelchair accommodation. If that’s the NIH plan to stop MS progression…it isn’t working yet.

The only other pilgrim there was a man sprawled out on a chair. Had he been conscious, I would have asked him if he needed me to signal to the functionary behind the glass door. Instead, I waited for the functionary to complete her personal phone call, then check her computer screen, then finally swivel somewhat to notice me standing the appropriate distance from the glass door, like a good wheelchair-free pilgrim.

She waved me in.

I used to feel unworthy of meal reimbursements. But that was before the drug the NIH tested on me came out on the market, and my monthly deliveries came with an invoice of seven thousand four hundred and something dollars per month.

I handed in my clipboard, feeling entitled to every last penny, darn it, and headed for my appointment at Phlebotomy.

The acronym for this new study? TRAP.

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Addicted to Trials

My name is Ms. Lab Rat. I have multiple sclerosis. I am addicted to clinical trials.

It had been 32 days since I’d finished my last clinical trial in Iowa City when I slipped out of a white van on a cold December morning and surrendered my coat and my purse to the jocular security crew at The National Institutes of Health in Baltimore, Maryland. When asked by a cheerful ex-navy, “Have you been here before?” I had to smile back. I’m terrible with numbers, but by my feeble estimation, I’d been to the NIH 44 times before: once a month for three years during the trial for Zinbryta, once every six months for the three years it took for the FDA to approve Zinbryta, plus twice for initial trial visits. Gentle reader, chances are your brain is less riddled with lesions than mine. You do the math. Numbers aside, I think we can all agree; I’ve been a regular.

Back when I started the Zinbryta trial, when the drug was still fairly new to me, my life had been much more limited by my disease. I was a regular at my drug store, a regular at the places I volunteered. No one paid me to hang around. Zinbryta stopped the raging inflammation that had peppered my brain with lesions. My relapsing remitting multiple sclerosis stopped feeling so…unremitting. And gradually, I was able to get small but super-meaningful jobs. First I was hired to host creative writing sessions with a uniquely brilliant group living at an upscale assisted living center. I am in awe of the supportive creative community we have maintained. Then I was hired to teach writing classes to radical, relentless, radiant young artists at a celebrated arts college downtown. The younger generation fills me with hope for a more just, more equitable, more dazzling future. Through the years, I have maintained the same prolific community writing workshop. We all publish. Some of us publish quite a lot. Zinbryta has allowed me to expand my identity beyond MS patient, to teacher. When the security guard handed me my one-day NIH ID, you’d better believe I thanked her.

I hopped back into the white van with a couple from Georgia. The husband had spent the trip describing the career he’d had to abandon. “I want to get back to work, do what I can from a wheelchair. But first I’ve got to get this cancer under control.”

I could relate to his frustration. I could relate to his hope. Zinbryta has helped rein in my MS. It’s been necessary. But it hasn’t been sufficient. When we reached good old Building 10, I hopped out of the van. I was eager to get my MS under control.

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Balance of Superpowers

Yesterday, my MS flared up out of nowhere.  That’s how I saw it, anyway, when out of the blue my legs just sank from beneath me. What an insult! I kept saying,”This is so surprising.”

My husband was unflappable. Finally he said, “This is not a surprise. You have MS.”

You would think, twenty three years after the diagnosis,  I wouldn’t need to be told I have multiple sclerosis. But it does still surprise me. I haven’t had my legs drop out from beneath me in months. I’d kind of hoped maybe that symptom would remain in the past.

While I depend utterly on my husband’s acceptance of my MS, I depend equally on my own stubborn denial to ensure I live my fullest life. Denial may be my greatest superpower. Acceptance may be his.

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An Open Fan Letter to Roxane Gay

Since hearing an interview with Roxane Gay on Fresh Air, I have been obsessed with watching or listening to every interview with her that I can find. Her point of view is refreshing and relaxing because she’s not trying to be an example to anyone. She’s just trying to be herself in a body that many in society dismiss at a glance. As a person in a disabled body, I can relate. Nobody cares about disabled people. That point was driven home just yesterday, when Capitol police dragged protesters out of their wheelchairs to jai.

Roxane Gay is a model to me, because she does a better job than I do of giving an honest portrayal of what it is like to live in a body that is not sanctioned by society. As she said to  Trevor Noah,  “I wanted to tell the story of my body, because when you’re fat in the world, people have assumptions….I think it is important to show what it is like to live in this world in a fat body.”

When I replace the word “fat” with the word “disabled’ I see we have the same goal. I am further from my goal than she is from hers. Her achievement shines light on where I need to go.

I am always trying to make my site accessible to people who can’t imagine what it’s like to have MS. I want to be that example of a person trying her hardest every day to overcome. But I’m afraid that in my quest to be a create a palatable persona, I might be neglecting the complexities of living with MS, a debilitating illness that has no cure.

For instance, I was very eager to post the image of myself zip-lining down a volcano in Costa Rica. That moment was a dream come true for me. I’m a person who has a hard time walking. Why wouldn’t I want to fly?

I felt chastened, though, when I came home and someone told me, “I have to show that picture to my son with MS. He would never zipline!”

I hate the idea of my blog existing as a rebuke to people with MS who don’t have the financial resources or the supportive spouse that make my adventures possible. I know what team I’m on. I also know what team would never choose me. (I’m looking at you, Mitch McConnell.)

I’ve been thinking about the images I share on this blog, and on Twitter. My profile picture on Twitter is of me in mid-jump. You might think from this image that I’m a super-athlete. In a way, I am. But that’s just because moving anywhere near normally is a lot harder for me than it is for the able-bodied. My legs can feel very heavy to me, because I can’t control them terribly well. If you’ve ever had to move a full-grown human being whose body is not attached to your central nervous system, you might get the idea. I can be dead weight to myself. So yeah, I often do feel a great deal of accomplishment by merely crossing a room. The closer I get to appearing to move normally, the more I feel I’ve gotten away with something. But this is what I fear: by aping normalcy, I am rejecting the very people whose daily experience I actually share.  Today I am posting a picture of myself not flying, not jumping, but squatting, as I take a break during a jungle hike. You will notice I used walking poles. I myself want more images of people using walking poles out here in cyber-space, so that people like me, who need them, can feel more comfortable about using them to go a little further in this world.

I am very eager to read all of Roxane Gay’s books. I am also eager to try harder to be true to my own experience, which isn’t all transcendence. Let me know when I fall short.

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What’s Wrong With This Picture?

Bad Decision

Yesterday my friend Monica and I went kayaking on the Miami River. When you read, “kayaking,” you might get the impression we were paddling madly. We were not. We were just two women of a certain age, bobbing along on a still lake, dipping our paddles occasionally as we chatted.

Monica and I met at a yoga class for people with MS. We’ve both had MS symptoms for decades. We share the same neurologist, Dr. Z. MS gives us a lot to talk about. I told Monica how much I admired her decision to stay away from MS medications, despite Dr. Z’s recommendation to start one. I think she’s been managing her disease really well. Monica runs her own business. She can hike for miles. She can drive without hand controls. She can put on a sneaker while standing on one foot. If I could do those things, I’d consider myself pretty well cured.

Monica told me she admires me for being brave enough to try experimental medications. I assured her I haven’t been brave, only desperate.

I would be oversimplifying to present us as taking opposite tacks. If you were to draw a Venn diagram of our approaches to MS, you’d find a pretty big overlap in the center. We both do yoga. We both experiment with controlling MS through diet; me in a clinical trial, and Monica in the privacy of her own kitchen. We are both total strivers, still hoping to get healthier, not sicker, as though we weren’t aware we have a degenerative disease. What’s our secret? Delusion, we agreed, laughing. Every day, we push forward, not necessarily ignoring the bad stuff, but not letting that stuff define us either.

When I observed that we’d been under the sun for a while, we paddled over to a shady spot, being the proactive types who wouldn’t ignore the sun and overheat, thereby triggering our MS symptoms.

Monica took a picture of me in my rented kayak, wisely sheltering beneath an overhanging tree. I’d made a good decision, right? Nope. I’d made a bad decision. This morning I’d woken up itching.  Turns out, I’d been nestled in poison oak. I’m not saying I would have been better off heating up in the middle of the lake. But maybe I should have chosen to not shelter quite so deeply in the shade.

Here’s the thing about living with MS in these times: there are many treatment options to choose from, including the option to not medicate. Smart, conscientious people can labor over these options for days, or even years, yet make a choice with grim consequences. When I was a little kid, I used to think I’d eventually recognize the bad option when I saw one. Boy, did I underestimate the complications of this world.

 

Steadier Together

As soon as I got diagnosed with multiple sclerosis (MS), I started practicing yoga…with people who did not have MS. Yoga is not a competitive sport, and I am not a competitive person, so I’ve never wasted any energy comparing my abilities to anyone else’s. It didn’t matter if mine was the wobbliest “Tree” pose in the yoga studio. Trees can wobble, in the right wind.

At no point did I feel a need to join a special class for people with multiple sclerosis. I was doing just fine, I thought, in the yoga classes at the Fitness Center, practicing with “beginners” ranging in age from early twenties to mid-seventies. But when I saw the flyer for MS Yoga in my neurologist’s examination room, I immediately decided to join that class, too. The MS Yoga class was free. I had nothing to lose. And besides, I liked the concept. Yoga has helped me, probably in more ways than I know. Wasn’t it nice that the neurologist was offering something positive that his MS patients could do for their bodies and minds? I saw my attendance as a yes vote to the whole idea.

I might have felt a bit apprehensive the morning of the first class…I’d met people with MS before, and most of them just brought me down. The only close friend I’d made with MS up to that point had had a sparkly, positive attitude…and the progressive form of the disease. She’d recently died, hopeful to the end.

The women I met at MS Yoga that morning were charming, charismatic, joyful, and curious. We started asking each other questions, and comparing notes, before Megan, our instructor, got a word in edgewise.

Did I like the class itself? Not at first. It didn’t seem remotely like any form of yoga I’d ever encountered; starting with the fact that Megan never even mentioned breath. To me, a yoga practise without breath is like a church service without prayer; every pose starts with breath, extends with breath, transitions with breath. If you don’t have breath, you don’t have life, and you sure don’t have yoga. But what our class did have, right away, was community; we were as fascinated by each other as if were all reunited siblings, separated at birth.

Our ending “Namaste” (“the light in me greets the light in you) would not be a goodbye. There was a lunch place two stories down from our ad hoc conference room/yoga studio. We all agreed to extend the party through lunch. We called out the high performers as we prepared to leave; “You can still balance on one foot as you put on a sneaker!” And as we went down the stairs, “You can walk without a banister!” We commiserated with the one who forgot her yoga mat and had to go back for it, “I forget things, too!” And the ones who had to rush off to the Ladies Room, “I have an MS bladder, too!” We peppered each other with questions over our salads and soups, universal ones, like, “Do you have any kids/grandkids?” As well as MS related ones, like, “Do you still work?” “Do you get social security?” “Where did you get that cane?”

After subsequent yoga classes, the lunches went on, and the confessions of various disabilities grew bolder; not every symptom was found to have a match. The confessions of memory loss were by far the loneliest; what was the self, without memories?

In the meantime, I grew frustrated with the classes themselves. What was yoga, without breath? When Megan finally told me her reason for withholding breath from the practice, her explanation shocked me. Apparently she’d been taught that handicapped people should not be “burdened” with such instructions. I said, “Everybody breathes.” The assumption that people with MS couldn’t handle breathing made for an insulting pedagogy. She took note. And stopped following it. Megan invited us to breathe in class, invited us to laugh. Classes got better, week by week.

One day, Megan introduced us to the Tree pose, that pose I found so challenging in my able-bodied yoga classes. In Tree, one must balance on one leg, and rest the foot of the opposite leg somewhere on the standing leg; perhaps on the ankle, the inner calf, or as high as the inner thigh. Megan proposed that we do Tree pose in a circle, while supporting our neighbors, palm to palm. This was a method we all could achieve. Instead of forming individual wobbly trees, we formed a steady grove.

As suddenly as the class was offered to us, the class was taken away. The department of Integrative Medicine gave no explanation. The UC neurologist who was involved with this program is seeking to reprise it, to this day.

On the last meeting of the MS Yoga Group, Megan closed with this poem by the Revered Sapphire Rose:

“She Let Go

She let go. Without a thought or a word, she let go.

She let go of the fear.  She let go of the judgments.  She let go of the confluence of opinions swarming around her head.  She let go of the committee of indecision within her.  She let go of all the ‘right’ reasons. Wholly and completely, without hesitation or worry, she just let go.

She didn’t ask anyone for advice. She didn’t read a book on how to let go  She didn’t search the scriptures. She just let go.  She let go of all of the memories that held her back.  She let go of all of the anxiety that kept her from moving forward.  She let go of the planning and all of the calculations about how to do it just right.

She didn’t promise to let go. She didn’t journal about it. She didn’t write the projected date in her Day-Timer. She made no public announcement and put no ad in the paper. She didn’t check the weather report or read her daily horoscope. She just let go.

She didn’t analyze whether she should let go. She didn’t call her friends to discuss the matter. She didn’t do a five-step Spiritual Mind Treatment. She didn’t call the prayer line. She didn’t utter one word. She just let go.

No one was around when it happened. There was no applause or congratulations. No one thanked her or praised her. No one noticed a thing. Like a leaf falling from a tree, she just let go.

There was no effort. There was no struggle. It wasn’t good and it wasn’t bad. It was what it was, and it is just that.

In the space of letting go, she let it all be. A small smile came over her face. A light breeze blew through her. And the sun and the moon shone forevermore.”

We have had to let go of the yoga class, but we have stayed in touch with each other. We are no longer individual w0bbly trees, but a steady grove.

 

The MS Diet Study: A Radical Idea

I value this study of the effect of diet on MS, not the least because it is radical. It isn’t often a rigorous clinical trial is run in which the end goal is not a marketable commodity in the form of a drug.

The end goal of this trial is patient health. It’s not about profits. There’s no cookbook cabal conspiring to profit from the chronically ill. Sure, a few thousand farmers markets may see a rise in sales of organic produce. No harm there. The fish oil industry may get a bump. But overall, no single party involved in the outcome stands to gain as much as wealth as Big Pharma does every time they release a new medication they can sell to captive consumers for as much as $7000 per month.

And yet: if you are to follow this link to the logical, researched TED Talk by the inventor of the Wahls diet, you will encounter a red warning label superimposed over the opening frame:

“Note from TED: This talk, which features health advice based on a personal narrative, has been flagged as potentially outside TED’s curatorial guidelines. Viewer discretion advised.”

And if you follow this link to learn more about the Swank Diet, Wikipedia will inform you, “The widespread claims made for the diet have not been substantiated by independent medical research.”

The good news: this MS Society sponsored clinical trial is being administered by the University of Iowa, and should finally provide the objective substantiation all people with MS deserve.

And while Big Pharma might not have much to gain financially from the results of this study, that doesn’t mean this study, if successful, won’t have a mighty economic impact. If we trial participants regain our health by merely adjusting our diets; if we leave our walkers and our reclining wheelchairs and our social security checks and go back to full time work, to do whatever it was we were schooled in, and trained for, if we can once again have the freedom to follow our dreams—we will be more effective than any worker who has had the luxury of taking health for granted. And if those $7,000/mo drugs are no longer needed, that will go a long way to correcting our nation’s disgracefully costly health care system.

Follow this link to Dr. Wahl’s rebuttal of the TED Talk warning.