Endless Knots

Kudos to Phyl

Phyl Rubin, half the Boston furniture duo whose commercial ditty (it's sing-song-y and ends with "Bernie and Phyl: Quality, comfort, and price...that's nice") has a way of replaying itself in the minds of us who live in the Hub, went public earlier this week with the fact that she has MS. She's had it for forty years, as she told The Boston Globe's Jenn Abelson in the front-page story, "Bernie and Phyl share a long-kept secret."

Phyl decided to come clean to "speak out and to help end this horrible disease...I’m one of the lucky ones."

Along with many others with serious but for the moment manageable chronic illness, I understand her reluctance to speak about it. People -- you know, all those sentient beings you interact with on a daily basis -- have preconceived notions of illness and it's easy for them to begin to regard people as their disease, which is about as off-putting as it gets. But there's a risk. If "you don't wear your illness on your sleeve," as one friend put it to me, then you may present as healthier as you are. If you lead with your disease, then we're back to the second sentence in this paragraph. Or, if you manage it well, then you might run into the comment that made me want to slug someone: "Do you really have MS? I mean, do you actually have that diagnosis?" As if anyone would pretend.

I applaud Phyl for taking it public and for shining some light on what can be a dark corridor at times. I'm sorry to hear about the symptoms that she struggles with, or any symptoms that any of us struggle with...and I think her talking openly will pay benefits to others.

"Bernie and Phyl: rolling the honesty dice...that's nice."

MS interview on The Exchange now up!

Take a listen to Ben Kieffer's interview with three of us authors whose essays appear in Voices of Multiple Sclerosis on The Exchange, a program on Iowa Public Radio.

NB: This is the first time I've ever spoken publicly about MS. Please let me know what you think. There's a lot to learn from this show, including Dr. Terry Wahls's scientific research that supports what seems evident to anyone with serious illness: eat right (lots of dark green veggies) and exercise. Her research and findings are, of course, more complex but if you're ill today and looking to get better, start at least with these two sine qua nons.

"Voices of MS" authors on The Exchange, Fri, 1PM EST--@IPRTALK

Photo of Ben Kieffer by Tom Jorgensen (thanks!)

 Please join me, along with two other authors who contributed to Voices of Multiple Sclerosis, on Iowa Public Radio's The Exchange with Ben Kieffer, tomorrow, Fri, Jan 8, 2010, at 1 PM ET (GMT-5) for an hour-long live show. Here's the copy from the IPR site:

Ben Kieffer talks with individuals who have offered their compelling stories in the new book, 'Voices of Multiple Sclerosis'. The book offers candid, heartfelt, and inspiring testimonials of 40 diverse individuals who have been affected by the crippling disease. Among the guests is Dr. Terry Wahls of Iowa City, who overcame secondary progressive MS through intensive nutrition and exercise coupled with electrical stimulation.

In addition to Terry, whose courageous story, "Telling the World," of revealing her MS to her medical colleagues while maintaining an active clinical and teaching practice, is worthy of its own book, and me (my original essay, "Feeling Numb," from which the one in this book was extracted), will be a third author, Caryl Hunter, whose story in the book, "Tough Year," still haunts me.

And, in case you missed it, here's my last post on the book, including links to blogs of other authors in the collection.

Voices of MS sells out!

Publisher Victor Starsia reports this morning that Voices of Multiple Sclerosis, where an excerpt of my essay, "Feeling Numb," appears, has sold out of its first printing in barely three weeks since its publication date. "This is the fastest this has happened for any of the books," Victor told the group of authors in an email just moments ago. Congrats to everyone involved!

We (the contributors) are cross-posting. Please see my original post to click to everyone else's.

Oh, heck. I'll just post them here as well.

Off-Topic: Non-profit MS anthology release -- Rachel Pollock

Exclusive Interview with Dr. Terry L Wahls, a Doctor with MS -- Diane J Standiford

No longer silent -- Caryl Hunter

"The story" -- Terry Wahls, MD

"New piece in Voices of Multiple Sclerosis" -- Marie Carter

Self and non-self: Voices of MS

In reaction to the intense loneliness that accompanies learning that one has an intractable and sometimes potentially fatal disease, Debra LaChance took an unusual, healthy, and inspiring tack: She started a publishing company and a nonprofit.

For the past five years, LaChance Publishing and the recipient of its net proceeds, The Healing Project, Debra's brainchild that she happened upon while absorbing her diagnosis of breast cancer, has literally been giving voice to the stories of people with disease.

Voices of Multiple Sclerosis is the seventh in the series (Voices of Alcoholism, Alzheimer's, Autism, Caregiving, Breast Cancer, and Lung Cancer have preceded it).

It's not easy to write about illness. Writing "Feeling Numb," my essay, which originally appeared in Ars Medica and whose excerpt appears in this volume, was the second most difficult writing I can remember (the most, my mother's eulogy). I never wanted to write about it, recalling the details too painful, waiting for the words to come close to excruciating, but, at a friend's urging, I forced myself. When the first draft was done, written by hand, itself a departure from nearly everything I've ever written, I put it in a pile of unfinished material (now about a foot tall) and tried to forget about it.

Then I saw a notice in Poets & Writers, a call for submissions for a collection of essays on MS. I dragged my scribbles out of my own slush pile, wrote and rewrote then sent it in. Eventually, as is the way of waiting for acceptances, one arrived.

Thanks, LaChance, and thanks, Victor Starsia, the publisher of the series. My piece is one of nearly three dozen, whose themes capture the sweep of the "problem" of MS--from The "Medical Overview" by John Richert, M.D., head of Research & Clinical Programs for the National MS Society to the obligatory (she's a celebrity) and moving (she's really lived it) account by Teri Garr to a series of essays grouped by their commonality ("I Have MS," "Now What?," "Living with MS," "The MS Family," and "The Gift of MS.")

I took the title of this post from Dr. Richert's piece, where he very economically explains the disease and points to its core: the body mistakes what is itself for what is not itself. That's largely the way its symptoms make one feel--how can I not feel what is nerve? How can who I am be not who I am, who I've always known myself to be?

The idea behind these books makes sense--for those suffering, for those who suffer because those they love are suffering, for those who treat them. They are excellent outlets for writers (and non-writers) as well. Some pieces in this volume read like poetry, others like diaries, together, the poetry of illness, despair, and hope, pathways toward meaning. Highly recommended, which is why UPI ran a feature on this book, Library Journal recommends it, and I suggest that you buy it for all you know who are touched by MS.

UPDATED: Links to posts by other authors in the collection:

Off-Topic: Non-profit MS anthology release -- Rachel Pollock

Exclusive Interview with Dr. Terry L Wahls, a Doctor with MS -- Diane J Standiford

No longer silent -- Caryl Hunter

"The story" -- Terry Walls, MD

"New piece in Voices of Multiple Sclerosis" -- Marie Carter

What to ask your doc about MS

A few weeks ago, I had the chance to meet Jen Laskey, who writes for Everyday Health (among other places), part of a network of health-related sites with good, practical information. Jen referred me on to this excellent post of hers with questions MS patients can bring to their doctors. Comprehensive, well-organized, nicely written - the whole shebang. Really helpful, Jen.

"A Doctor with MS Confides in Her Patient"

Risky and very humane move by Dr. Anne Brewster, a Boston internist. Here. We need more Dr. Brewsters.

What MS does to people

A very dear friend sent "Feeling Numb," my essay about MS, to her brother, who is in his early forties and who was recently diagnosed with MS. Today she relayed his response, which I received permission from him to publish here. If you know anyone with MS, you might want to mention this post as his words capture so much of the confusion and psychic pain of debilitating illness:

I just got the courage up today to read the rest of this.  I started to read it when you sent it, but after a few paragraphs it hit too hard to continue.  It is quite remarkable how accurate her symbolism and descriptive prose is for this "thing."  It's so much different than any other disease in that it is not likely to kill you.  Instead, and in some ways more horrific than death's cold embrace, it will move about and mutate like dozens of mini-demons poking around inside of you.  One day in the electric jolt down your spine, the next in the simplicity of numbness, and the next in the mental and physical exhaustion from completing some "arduous" task - like walking 20 feet.
 
I think I have 1 book and one epic poem in me.  Someday I would love for a chapter in my book of life to allow for them to be written.  We shall see.  One is on my life and the other is on MS.  The working titles of these two projects are: "The Sins of the Mother" and "The Real Theory of Relativity:  How I used to think that having a numb penis was bad until I shit my pants."

If this is true, bye-bye MS

Thanks to Clara Shih, I've just come across this article reporting on research claiming that MS has been reversed in animals, namely mice. Researchers at Jewish General Hospital Lady Davis Institute for Medical Research and McGill University in Montreal are reporting that "a new experimental treatment for multiple sclerosis (MS) completely reverses the devastating autoimmune disorder in mice, and might work exactly the same way in humans."

According to the article in physorg.com:

The new treatment, appropriately named GIFT15, puts MS into remission by suppressing the immune response. This means it might also be effective against other autoimmune disorders like Crohn's disease, lupus and arthritis, the researchers said, and could theoretically also control immune responses in organ transplant patients. Moreover, unlike earlier immune-supppressing therapies which rely on chemical pharamaceuticals, this approach is a personalized form of cellular therapy which utilizes the body's own cells to suppress immunity in a much more targeted way.

GIFT15 was discovered by a team led by Dr. Jacques Galipeau of the JGH Lady Davis Institute and McGill's Faculty of Medicine. The results were published August 9 in the prestigious journal Nature Medicine.

The only proviso?

MS must be caught in its earliest stages, Galipeau cautioned, and clinical studies are needed to test the treatment's efficacy and safety in humans. No significant side-effects showed up in the mice, he said, and the treatment was fully effective with a single dose.

But when it was caught early, the treatment appears to be quite simple:

"It's easy to collect B-cells from a patient," he added. "It's just like donating blood. We purify them in the lab, treat them with GIFT15 in a petri dish, and give them back to the patient. That's what we did in mice, and that's what we believe we could do in people. It would be very easy to take the next step, it's just a question of finding the financial resources and partnerships to make this a reality."

Phenomenal.

Walking with MS--a triumph

Christie Beverly, who works with our friends at Strategic Knowledge Solutions, is participating in the Walk for MS, sponsored by the National Multiple Sclerosis Foundation/Hampton Roads Chapter, with the goal of raising $2000. Though I don't post many of these requests (if I did, I'd be running one every day), this issue is rather close to my heart. Please help and thanks. Here's Christie's appeal:

Why I Walk for MS

I walk because I'm a fighter. Diagnosed in 2005, I've been fighting ever since, and I refuse to let it own me. Thankfully, my case seems to be mild - at the moment - but most are not so fortunate. Not a day goes by that I don't wonder if tomorrow will be the day my MS reappears.

I walk because I have a beautiful daughter who I hope will make it through life without ever having to hear the words "You have MS."

I walk because two friends were also diagnosed this year, and I want to do everything to prevent more people from learning what it means to live with this disease.

There is no cure for multiple sclerosis, and with a diagnosis most often occurring between 20-50 years old, many people face a lifetime of uncertainty and unpredictability.

Why You Should Sponsor Me

Don't do it for me...do it for the millions out there who desperately need our help. The National Multiple Sclerosis Society will use funds collected from the MS Walk to support research for a cure tomorrow, and to provide programs that address the needs of people living with MS today.

Because we choose to walk for those who sometimes can't, because we choose to donate to walk MS, we are getting closer to the hour when no one will have to hear the words I heard four years ago and my friends heard this year -- "You have Multiple Sclerosis."