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.

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.

Wahls Elimination Diet vs Swank Diet: Which Is the More Effective Treatment for MS Related Fatigue? Ms. Lab Rat jumps into the maze.

Some Background (faithful readers can skip to paragraph 5):

As my faithful readers know, I am a machine with faulty wiring. Multiple Sclerosis has somehow managed to convince my T-cells to attack the insulation that surrounds the nerves conducting all the information my body needs to function optimally. This insulation is called myelin, and my myelin is ratty with scars. (Multiple sclerosis=many scars.)

When I got the diagnosis, I refused to accept my fate. I tried the first medication I was offered. And when that didn’t work, I tried a second. And when that didn’t work, I entered a clinical study of a new medication, one, I was told, that really made a difference. But as will happen 50% of the time with clinical studies, it turned out I was assigned to the control group. I didn’t get the new medication. I got a placebo. And I got more scars.

I not only tried new medications, I tried new doctors. (I moved around a lot, at first, so that part could not be helped.) When my fourth neurologist gave me the dour news that I was doing very badly, and could expect to do worse, and then much worse until I died, well, I switched to a cheerier doctor. Who gave me the same dire news, but with a big smile. I dumped her, too. Instead I found a brilliant researcher, Bibiana Bielekova. Researchers are always looking for better ways to do things. So am I.

Long story short, I talked Dr. Bielekova into letting me try an off-label drug that worked with the immune system, rather than fight it. Daclizumab works by boosting the population of Natural Killer Cells, which function like the good cops in the Wild West of my immune system; the Natural Killer Cells keep the rouge T-Cells, or bad cops, at bay. Daclizumab worked. The T-Cells stopped attacking my myelin. Eventually, the National Institutes of Health (NIH) funded a study of Daclizumab. I was lucky enough to join the safety arm of the study, so I was assured a constant supply of Daclizumab. In the last ten years, this medication has been so effective, the T-cells have only once managed to create a new scar. Earlier this year, the FDA apporved Daclizumab under the name Zinbryta. On the day I injected my last dose of free study medication, I was accepted into a new clinical trial.

Faithful readers, jump in here:

Finding a drug that stabilized my MS only solved half of my problem. While my T-cells have stopped chewing on the fatty myelin that insulates my nerves, the many scars created by years of insatiable gobbling still interrupt the signals of my central nervous system. I have to cope with fatigue, pain, lack of coordination and balance, and a digestive system that’s out to lunch. Oh yes, and a brain that continues to shrink. You would think, then, that a person as proactive as I am would have immediately acted when I saw a very convincing TED Talk by a smart researcher who overcame an even worse case of MS than mine. Like me, Dr. Terry Wahls took the latest greatest MS medication. And like me, her MS only got worse. Dr. Wahls soon found herself confined to a tilt-recline wheelchair. Unlike me, Dr. Wahls is a physician. She read the latest medical research about diseases in which brains shrink. She read studies in which animal brains had been protected from shrinkage using fish oil, creatine, and co-enzyme Q-10. She started taking human proportioned dosages of these substances, and started getting better. This was her first round of self-experimentation. Slowly but surely, she tweaked her diet to include and exclude certain nutrients and ultimately found herself out of the wheelchair, biking to a full day of work as a doctor, and, of course, promoting the diet that saved her. She managed to get the Multiple Sclerosis Society to chip in 1 million dollars to fund a scientific study to compare her diet with the Swank Diet, one that has been  found to help people with MS for decades. I, who was somehow too intimidated years ago to follow the Wahls Protocol, have now agreed to be part of this study, which is going to be a much more onerous and complicated option than simply buying her book and following along. How much more onerous and complicated? I’ll share the details in my next post. But strange as it is, a Lab Rat is a Lab Rat. I would rather experiment on my diet in a study as a contribution to the greater public knowledge than to simply tinker with the diet on my own.

How about you? Have you ever participated in a clincial trial? Would you?

 

 

Decisions, Decisions

Last Friday, I had a simple decision before me: ziplining or kayaking?

My friend Elaine and I had agreed to go ziplining—oh, two Octobers ago, and somehow our plan kept getting put off. We were on the verge of letting yet another bright autumn slip away with no zip. Neither of us wanted to be the first to admit that we are no longer in the market for thrill seeking, that a sedate afternoon of kayaking is now more our style; thus the question of which activity to pursue was still dangling by a text message thread as I entered my optician’s office for my annual exam.

I wasn’t all that keen on keeping the appointment—I already had a lifetime supply of contact lenses. This is how old I am: I am so old, I remember when “soft” lenses were not yet a thing; when contact lenses were suffocating brittle little plates. A ripped contact lens meant penury, for in those days one contact lens cost far more than today’s one year supply of soft “disposables.”

As the oldest of three, then four, severely myopic children in a family with little or no disposable income, I would have been astonished to learn civilization would eventually produce disposable contact lenses. To this day, I find the concept offensive. Why throw out a perfectly viable technological miracle?

We children wore our contacts until the lenses cracked, or until our prescriptions worsened, whichever came first. As such events occurred with horrific regularity, our severely myopic family of five, then six, was a winning lottery ticket for our local optician. I couldn’t help but resent our optician’s relative wealth. And feel deep personal shame every time I let the family finances down…again…while contributing to that mustachioed man’s vacation fund.

I’ve never quite outgrown that shame, or my indignation when suddenly little slips of plastic went from being worth hundreds of dollars each to being sold in 365-packs for way cheaper. There has never been an intermediate stage of cheap single serve contact lenses…except in my medicine cabinet. I still wear my contacts until they rip or until my prescription becomes obsolete. I keep reaching what I think must be the outer limits of nearsightedness—a -10 on what I assumed had to be a scale of -1 to -10—only to learn in subsequent visits to subsequent opticians that there are further negative integers.

Last Friday, I hit a new low: -13. And that wasn’t the bad news.

The bad news was that the flashing lights I’d sensed as coming from behind my left eyeball weren’t some silly commonplace symptom of my multiple sclerosis, as I’d assumed. The optician referred to those flashing lights as an “event” that signaled my retina was maybe thirty days from detaching. She then recommended I get an appointment thirty days out, though I should see her earlier, if “a dark curtain falls across your vision. Or an array of floaters.”

I made the appointment to be polite; I was already thinking of consulting a specialist. There had to be a more proactive approach.

I refused to enter “detached retina” on Google. Instead, I texted my husband about the problem, figuring he’d Google for me, and spare me the worst. He texted, Don’t stand on your head. Stay away from roller coasters.

Excellent! The zip-line vs. kayak decision was made for me! No zip-line.

This retina crisis was wonderful. Clarifying. I would put my affairs in order. Pronto.

Another decision—vote early or vote on Election Day?—resolved. I would vote first thing the next morning.

The future is…more and more problematic.

For months now, I’ve been looking forward to driving up to Iowa City to participate in an exciting study funded by the MS Society which will compare two popular diets to treat MS-related fatigue. I’ve been fascinated by the possibility that MS can be treatable through diet, but I’ve always been hesitant to go all-out. Joining the study is going to force me to be one hundred percent compliant, while also being a force for the greater good.

And while participation in the study has been reason enough for visiting Iowa City, I’ve also been planning to stick around town the following day for a ceremony to honor James Alan McPherson, a brilliant writer and compassionate teacher of mine from the Iowa Writer’s Workshop. Other writers I love and esteem and/or have read will be traveling from around the country to gather in his honor. I’ve been reading his work all week, revisiting some of the very themes I remember him bringing up in workshop, to little avail. Most of us students weren’t yet well equipped to respond. I, for one, was too young at the time, too narrowly focused. Which is why I’ve appreciated his words being frozen in time in his essays, waiting patiently for decades for me to finally grow up.

While I’ve lost my chance to ever talk to Jim again about Spartans vs. Athenians, I’m happy to say that at least I did have a chance to reconnect with him five years ago, at an Iowa Writer’s Workshop Seventy Fifth Anniversary Reunion. He had been sitting alone in a crowded room; unrecognizable in that he was thoroughly unacknowledged. I sat and talked with him a long time, comparing notes on living with chronic pain and chronic illness. When I left him, I didn’t expect he’d make it another five years; I don’t think he was expecting that, either. The ceremony for him will be a vast and profound validation. It will be something to see. I’ve wanted one of us to get to see it.

So I went to a retina specialist. While I carry that old grudge against opticians, I have all the respect in the world for ophthalmologists. I’d expected an ophthalmologist would be proactive, would have some sort of plan to prevent a “dark curtain” or “an array of floaters” from falling across my vision. Surely, a retina specialist wouldn’t keep me in suspense for thirty days.

The retina specialist saw me promptly. He took a very fancy picture of my eye. That was service. He said I should make an appointment to see him in thirty days, or to call him immediately , if  “a dark curtain falls across your vision. Or an array of floaters.”

I had to admit it. The optician wasn’t so far off.

But this guy is better. He has to be. He told me he can fix the problem. He told me that if I get to him early enough in the trauma, he can fix the problem in his office. But if I get there later? He can fix it in the OR.

I already knew from my husband’s Google foray that those OR surgeries take weeks to recover from.

It seemed to me, then, that it was a good thing I lived a mere ten minute walk from his office.

“So,” I ventured, “I like to travel. Do you think it’s a good idea to travel right now?”

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The specialist answered soundly, “Travel.”

I went ahead and made an appointment with him for thirty days out.

Yesterday, I packed my bags for a three day trip to Iowa City. It was a gray day; perfect for my light sensitive eyes. I made it seventy miles before I started seeing floaters, squiggly little lines wafting across the gray sky. I wondered, how many floaters constitute “an array?”

I still had four hundred miles to go. There was so much waiting for me at the other of this trip. People I haven’t seen in five years, in twenty years. People I’ve been eager to meet. But the only person I was thinking of was my husband. How awful it would be for him to get a phone call asking for a rescue. Or worse, a phone call from a far-away hospital.

I had to make an uncomfortable decision.

I could keep driving, keep asking myself, every few miles or so, is this an array?

Or I could turn around.

It wasn’t a difficult decision, after all.