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.

 

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Today I’m a Guest Blogger at Solstice Literary Magazine

Solstice, a magazine of diverse voices, added my voice to its choir today. This lovely venue gave my essay a sweet write-up. Follow this link to read my essay about race and disability and love.

Today I got some good news and some bad news. The good news came from my retina specialist, who regards the opinions of the last two doctors I’d spoken with as “outdated” and assures me I can continue to practice yoga and even do inversions without increasing the risk of dislodging my retinas. The bad news came when I arrived, pupils still dilated, for my writing workshop at a senior living facility. I learned that one of the writers had died while I was in Costa Rica. She had died suddenly but died well, in the midst of a bridge game with her lifelong friends. Had our departed author learned in advance the circumstances of her own ending, I think she would have been mostly pleased, but she would have wanted to have finished the novel she’d been working on. Her characters, who had seemed so alive, are  in a kind of purgatory at the moment. I’ve given my workshop the assignment of imagining fit endings for her characters. We will finish her book with our own versions, in our own minds, in her honor.

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Full Speed Ahead on MS Diet

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

And the winner is…

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

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

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

About to Launch

I am about to complete the Phase One, the Usual Diet phase, of the MS Diet study, which compares the efficacy of the Swank Diet with the Wahls Protocol in improving fatigue for people with multiple sclerosis (MS).

My husband and I concluded the Usual Diet Phase by going somewhere unusual. We’d never been to Costa Rica before. We wanted to eat our way through a new country without making any gringo requests for “gluten-free” anything. As it turned out, we ate very healthily there, and could have followed either diet without causing a stir. At one of the bed and breakfasts where we stayed, breakfast consisted of a neighbor’s eggs, seasoned with herbs growing in the kitchen garden, accompanied by juice squeezed fresh from oranges I’d picked myself in the backyard. And the coffee was picked right there in town. Food can’t get more local than that.  Yum! Costa Rica is a much healthier nation than the USA. (More on that in a later post.)

Tomorrow morning, my husband and I will take the seven hour road trip to Iowa City, IA, the site of the Diet Study.  This town has some sentimental value to us; it was here that I went to grad school, here where our only child was born. The hospital hold memories, too. It was here where I worked for the Telemedicine Resource Center, here where I had my first MRI, first lumar puncture, first spinal headache (when the puncture went wrong.) Here was where I got the diagnosis, twenty two years ago, that made me think I’d have less than ten years left outside a wheelchair. I’m still walking. But more slowly than I’d like.

On Wednesday, after my fasting blood is drawn, my food records are handed over, and my motor assessments are taken, my husband and I will meet with the study nutritionist, who will announce which diet we will be expected to adhere to for the next twenty four months. My hope, of course, is that whichever diet we get will reverse my disease course, that this will not be a mere twenty four month change, but the beginning of a lifetime shift. Are my hopes too high? My husband thinks so. He thinks we eat pretty darn healthy already. But he’s open to giving either diet a chance. I am so grateful for that.

The Swank Diet is a low saturated fat diet that eliminates red meat and high fat foods and includes whole grains and fat free dairy products. The Wahls Elimination Diet eliminates all grains, dairy, legumes, eggs, and nightshade vegetables/spices. Both diets include fruits and vegetables and dietary supplements.

Wish us luck!

The Immortal Life of Henrietta Lacks Asks the Wrong Questions

I hope Oprah’s HBO version of the Henrietta Lacks story does not discourage people of color from participating in clinical trials. Our nation’s institutional racism has certainly extended to health care. I’ve been in three clinical trials, and the one I’m in now, which studies the role of diet in MS, certainly has the least risk associated with it, and the most benefit. From what I hear, not many people of color are enrolled. I understand the context. But I think they are missing out.

Ms Lab Rat

Rebecca Skloot’s painstakingly researched, thought provoking book, The Immortal Life of Henrietta Lacks, is the engaging story of a young white science writer who makes it her mission to humanize the patient behind the HeLa cells, a strain of apparently immortal cancer cells with a Zelig-like existence.

The HeLa cells have made and lost researchers millions of dollars. They’ve been instrumental in countless medical triumphs, and they’ve corrupted test results the world over. They’ve been shot into outer space, and into the arms of powerless prisoners. The HeLa cells originated in a woman who was never asked if she would agree to be a tissue donor, and who would never live to see any of the spectacular consequences of that surreptitious biopsy.

Henrietta Lacks was a young mother of five who felt a painful knot in her womb, and sought free medical care in the “colored” section of Johns…

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In Celebration of My Students

About ten years ago, I met a very nice woman with my last name who said she was working on a historical fiction. At the time, I was not a big fan of  historical fiction. She mentioned her historical fiction was also a romance. I was not at all into romance. (At least, not as a literary genre.) She confessed that her historical romance was nearly 900 pages long. And unfinished. I guess I must have thought she was a very nice woman indeed, because I volunteered to read her 900 page unfinished  manuscript of romantic historical fiction. On our second meeting, she looked more than a little apologetic when she handed over a very heavy sack of papers. At this point I may have warned her that there could be a problem with this arrangement: I am not a very nice woman. If I didn’t like her book, I would tell her so.

What was I getting into? Perhaps this would be the beginning of a very short relationship. When I handed her manuscript back a few days later, Maria McKenzie scanned through and saw my semi-legible scrawl wending through just about every page. I told her she did not have a novel. She had three novels. I have been scrawling over her manuscripts on weekly basis ever since.

The three books of Maria McKenzie’s Unchained Trilogy, Escape, Masquerade and Revelation, have gone on to become bestsellers on Amazon’s African American Historical Fiction list. And today Audible released the first of the trilogy on audiobook. 

When you are done reading Maria’s trilogy, you will jump to her gripping historical fiction from a more recent era, The Governor’s Sons. If you are in the mood for comedy,  you will laugh out loud reading her foray into mystery, From Cad to Cadaver: A Black Ops Detective Story. She’s got another African American Historical Fiction in the works now, and it is shaping up to be her most ambitious and controversial yet.

When my MS has acted up, this prolific author and unwavering friend has prayed over me, has baked my family delicious pans of lasagna. I am so grateful for the many students I have had who have turned into friends. Each and every one of them has shared their complex inner lives with me, widening my scope of interest.

Here is an incomplete list of links to my students’ works. It is incomplete, in part, because many of the talented writers from The Clifton Cultural Arts Center, The Art Academy of Cincinnati, The Kenwood Senior Living Center, The University of Iowa and my long ago workshop in CT have produced works of great literary merit but have not yet published.

Phone Scams by Lee German

A Winter Break by Elaine Olund

Letter Bomb by Elaine Olund

A Double Life by Elaine Olund

Sea Change by Elaine Oland 

You Are Unique by Maria Ramos

Something Sweet by Andrea Rotterman

Introducing the Eradicator by Edith Samuels

Jigsaw by Edith Samuels

A Circle of Gratitude by Joan D. Sattler

Thoughts and Attitudes by Joan D. Sattler

Two Visitors by Win Swormstedt

Put it on the Tab, Mr. Joe by Ida Zinam2012-04-03 CCAC _4039649

The Ordinary Woman in the Airport

 

My husband and I were hanging around the welcoming area of CVG, watching for our son amid the parade of newly arrived travelers, when I recognized someone I had never seen before. I recognized her deeply, with every thwarted nerve in my MS racked body.

The woman was ordinary enough; middle age, medium build, medium brown hair cut to a medium length. But her gait…wasn’t quite ordinary.

Don’t get me wrong, the woman was moving about as fast as any of the other newly arrived travelers. But it was clear to me that she was expending about ten times as much effort to do so. Her legs clearly had their own agenda; they wanted to dangle. She was forcing every step; her legs dragged and flopped but ultimately kept flopping in the right direction. And because of that, because she could see she was closing in on the greeting place, she had a big smile on her face—not a forced one—a smile of absolute triumph, like a marathoner approaching a spangled banner.

I recognized myself in her smile; I knew the depth of her achievement. I used to walk that walk, or a version of it, every month on my way home from another clinical trial visit to the NIH (National Institutes of Health) where I would receive another dose of the MS medication now marketed as Zinbryta. This drug has kept me walking, albeit with great effort.

Consider this post my small effort to remind you, gentle reader, that NIH is there for you, finding cures to diseases you may be unaware exist…until one day that disease strikes you, or a family member. Funding for the NIH is in danger right now. And if that doesn’t seem a relevant topic to you right now, congratulations. But good health is transient. You have to work to keep it. And sometimes, despite your best efforts, it slips away.

Please do what you can to maintain your health. Do what you can to maintain the NIH.

Keep smiling; ordinary people can achieve extraordinary things. Just think of that woman in the airport. Here’s the secret behind her smile: sometimes it takes ten times the effort to keep moving forward, but when the goal is in reach, there is ten times the satisfaction.