Buses and Automobiles

Thirty years ago, I was introduced to a guy at a party who said he was a writer.  Reader, I married him. His non-fiction sketch, Bus Portraits, got published this morning by X-R-A-Y Literary Magazine. The physicality  of this piece knocks me out. And yes, it does belong on a blog about disability.

Tom Grogan, a writer in my Tuesday workshop, recently wrote an eloquent essay about the pain and loss he felt when he gave up driving. It was published by the Cincinnati Enquirer.

As far as I know, the two men have never shared a bus ride together.

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TRAP Reboot

My husband and I are waiting at our gate for our flight to Dulles. I’ll be back at the NIH (National Institutes of Health) tomorrow morning at 7am to start anew with the TRAP trial.
This trial is exciting, because it is trying to address the woes of those of us who are no longer deriving much benefit from MS drugs.

MS drugs are most effective when they are started very early in the disease process. Over time, their efficacy declines. While FDA approved MS drugs have varying rates of success at preventing relapses, none of them are all that great at penetrating the brain tissue, where inflammation hides. The longer you have MS, “compartmentalized inflammation” insidiously drags you down, even as your MRI shows no new lesions.

The TRAP trial is investigating four inexpensive time tested medicines to see how effectively they work to counter the stealthy decline within cells in those of us with the progressive form of the disease.

The four drugs are: Pioglitazone, Montelukast, Losartan, and Hydroxychloroquine.

The trial is testing the performance of these drugs when taken alongside standard MS drugs, so as not to abandon whatever potential benefit the standard MS drugs may confer. When I’d first signed up for the trial, I’d been on Zinbryta. When Zinbryta got pulled from the market in February, I was instructed to stop taking the supplementary medication from the trial as well. Now that I am on a steady course of Tecfidera, it can be paired with one of the four investigatory medications when I start the trial anew.

Tomorrow they will be running a battery of tests on me at the clinic. I will be interested to see if I’ve been on a plateau since I stopped taking Zinbryta and the TRAP medication, or if the plateau has been…dipping a bit. No matter what news I get, I’m going to keep running up the down escalator as fast as I can. I’m not going to passively rely on medication. My own wellness program includes: a Wahls Diet, so many supplements, mini-weight lifting, meditation, yoga, walks with the hubby and dogs, deep friendships, and meaningful work that supports others.

Which reminds me, thanks for reading this blog. And deepest thanks to those who have endorsed my nomination for Patient Leader in the #WEGOHealthAwards, as well as those who have gone so far as to link to my video. Reading your passionate testimonials makes me feel like Tom Sawyer spying on his own funeral!

A Pat on the Back from Ms Lab Rat

On June 23, I finally realized I shouldn’t reduce my blog to being just about me as a person with MS. I’ve got a lot more going on than a chronic disease. When I’m not telling my own stories, I’m working to help others tell their stories. And often enough, my students have successes that ought to be shared. I vowed on this post,  ” From now on, when one of my students deserve a pat on the back, I’m going to go ahead and pat.”

Guess what?

A long time member of  The Clifton Writer’s Workshop, a group I facilitate, just had a fine editorial published in The Cincinnati Enquirer.

I do hope you follow this link and read Andrea Rotterman’s nuanced piece about a her dual roles as gun owner and gun violence survivor. She labored over this essay, because she wanted to get the details right. All too often, the press presents gun ownership as an issue that is black and white. I love that her editorial ends with questions, not answers.

Does a link to an editorial on gun violence belong on a blog about multiple sclerosis? Gun violence is a more pervasive health problem in this country than multiple sclerosis. There’s only about 10,000 new MS cases diagnosed a year. The CDC published data showing 38,658 gun deaths for 2016, including suicides. It seems to me it should be easier to eradicate gun deaths than it’s been to eradicate MS.  But as Andrea’s editorial shows, nothing is as easy as it looks.

I’m so proud of Andrea for joining in our national conversation. It takes a lot of guts!Head Shot

If you like what I do, please endorse me on the WEGOHealth page to amplify my voice and the voices of the chronically ill.  Thanks for reading!

“Look at the Pretty Flowers!”

Setting: Early Evening

My husband is walking our two houndmutts as I, with my sticks, am trying to keep up.

HUSBAND: So what’s the itinerary at the NIH? Do you get the spinal tap the first day, or the second day?

ME: The second day. My last visit they gave me the spinal tap the first day, which was ridiculous, because then I had to perform all the evaluative tests the second day while I was still recovering and had a mild spinal headache, so obviously my scores would have turned out lower than optimal. But in a twisted way I’m kind of happy those scores were probably lower than they should have been, because now my decline won’t look so steep, since this time they’ll be testing me before they drain my spinal fluid.  I’m kind of self conscious about my pronounced decline.

HUSBAND: (Glances down the street.)  Look at the pretty flowers.

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ME: (laughing) Like you ever say, ‘Look at the pretty flowers.’

We walked on. It was a pleasant walk, after all.

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There are a lot of pretty flowers in our neighborhood.

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The Overgrown Road of Laupāhoehoe

To live successfully with multiple sclerosis, you must become an artist of improvisation. You never know when (or how) your body is going to horrify you next. MS is, I dare say, a master class in mortality. Gentle reader, we are all on the same conveyor belt, heading for the same destination. Some of us just get to have a more challenging experience resisting the inertial pull as we dodge hostile takeovers on random locations throughout our nervous system.  We need to be flexible. We need yoga. And that is why, every morning of my stay at the Temple of My Dreams, I’d leave the downstairs living quarters and make my way up the stairs, and then up the ramp, to the second floor entrance to the yoga studio.

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Once I reached the pillars, this is a glimpse of what I’d see to my left:

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I wish you could hear the ocean, as I did. Or the breezes. Or the birds. I would sometimes see glimpse a cat (or two) on my approach to the temple entrance on the second level.

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The temple itself was inhabited by a black cat.

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This cat is apparently very used to partnering in yoga.

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Ostensibly, the cat and I had the studio to ourselves. But if you’ve ever taught me yoga, or shared a pose with me, be assured, I snuck you in, too. The studio was spacious. And full.

There was a reason our family had chosen to visit The Big Island. When my husband graduated college, he and his dad celebrated with an epic two day climb / one day descent of the massive volcano, Mauna Loa. What better way to celebrate our son’s graduation from Vassar than to follow this tradition? Once we learned our son had signed on with a start-up in Beijing, it seemed only logical to give him a head start on the twelve hour time change with a ten day vacation in a time zone six hours closer to Beijing time. As parents, we’d do anything to ease a transition that is in many ways absolute. We knew our son would be starting a life far outside our areas of expertise. Our opportunities to ameliorate  his life challenges were drawing to a close.

During the planning phase, my husband kept bringing up the issue of what I would do during the Father/Son volcano expedition. Sorry, I am not the volcano vanquishing MS superhero you might find on an advertisement or some other blog. (Though I’d love to be!) I’m a fairly ecstatic swimmer/snorkeler,  but in the past I’ve gotten in some trouble overheating on the beach. My husband is accustomed to being my superhero. What would happen if I were to get stranded snorkeling while he was busy scaling the volcano with our son? His idea was to set me up in some luxury hotel for the haole (white) tourists on the dry side. No thank you! I wanted to choose my own adventure.

Meanwhile, the adventure my husband and son had chosen was going up in smoke—or more accurately—in vog. (Vog being the term for smoke that comes out of an active volcano.) As packages arrived at our house with backpacks and state of the art camping equipment, so daily updates arrived in our in-boxes on the steady eruption from Mauna Loa’s sister volcano, Kilauea. My husband kept expecting the eruption to end. But the goddess Pele didn’t seem to be running out of lava. As the date for our vacation grew nearer, he finally called the Park Service, and learned all the trails were closed. The men in my life would have to cancel their epic hike of Mauna Loa. No problem. They too, are flexible. They, too, have to live with MS. My husband found an achievable walk: an eight mile hike on Pu’u wa’awa’a. Achievable—for them, anyway. I hate to write that my eight mile hike days are gone forever. I’ll say this much: the day of the Father/Son hike, I would still have to find my own way.

But once we arrived at the AirBnB, I knew it had everything I needed for a blissful day on my own.  I could do yoga, at my pace. Break for writing. Break for meditating. Break for sitting on the lanai, soaking in the sights and sounds of the garden. Break for walking down to the beach. A five minute walk. An achievable walk. I’d have plenty to do while my husband and son took their achievable hike.

One morning, as I was leaving the yoga studio, I got a text from my husband. He’d taken a walk on an overgrown road that ran along the mountain side of the Jodo Temple. My son and I had refused to go with him. It looked like this:

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My husband texted that you could see the ocean from the road. The views were incredible. We should come! So we did. The views were incredible.

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Sure, there was a landslide to scurry over. But everywhere: island foliage in all its exuberance. Over a low wall of carefully assembled lava rocks: a view of the ocean. And after an eighth of a mile or so, the unmistakable sound of a waterfall. The air got cooler. We found ourselves under a leaf canopy, staring up at this:

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A little farther along, we stumbled on a second waterfall.

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My husband said, “All this for us? You’ve got your paved road in the wild. Our own private waterfalls.”

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All that for us. For me. You’d better believe I returned on the day of the Father / Son hike. It was just the perfect mix of challenge and beauty and wild wild wonder. At just the right temperature. Mahalo, Pele. Thank you. It all worked out just right.

The Yoga Cat Will Have To Wait

A few posts back, I had promised I’d take you with me to the yoga studio over the living quarters of the Temple of My Daydreams, so you could meet the yoga cat. But did I do that?

No. I did not. Instead I inserted a post about my WEGOhealth best blog nomination, and patted myself on the back. If you do enough yoga, you learn to pat yourself pretty far down your back. Now that I’m done congratulating myself, I’d like to congratulate two of my students.  You would not believe the extraordinary quality of writing I see every week from ordinary people here in Ohio, the most ordinary state in the United States of America. My workshops generate unforgettable stories that have mostly not yet reached an audience larger than five to eighteen readers, but absolutely should. Which is why I’ve been so pleased that in the last few weeks, two of my students have managed to receive broader recognition.

I usually don’t blog about my role as a teacher. For instance, my heart just burst with pride back in February, when a student of mine, a long time community theater performer and first time playwright, received a standing ovation at the Aronoff Center for the Arts after the staged reading of her hilarious play Humble Pie. Did I blog about the staged reading? No, I did not. This is an MS blog, and Barbara Timmon’s play has nothing to do with MS. But maybe, by not blogging about my student’s success, I was playing into the notion that my life is conscribed by my disease. It is not. From now on, when one of my students deserve a pat on the back, I’m going to go ahead and pat.

My first pat on the back goes to Edith Samuels, a graduate of Vassar College. For years, I’ve been trying to find a publication for her deeply moving poetry series about a love that has persisted through Alzheimers. I was beyond thrilled when Reminisce Magazine contacted me with the acceptance of her story, The Spy Catchers, which is about her truncated surveillance career back in 1942.

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If you’re anything like me, you pass a good deal of  quality time in waiting rooms, and might easily locate the summer edition of Reminisce Magazine wedged between Neurology Now and the latest issue from AARP. You’ll find you have plenty of time to read Edith’s adventures as you wait for the sexy drug rep to stop batting her eyelashes at your neurologist. Those of you who spend your summer hours outside of medical facilities can treat yourself by listening to the author read her story here:

 

 

My second pat on the back goes to the ruthlessly honest storyteller Maria Frangakis, who first took a writing workshop with me  maybe nineteen years ago at the  Tabor Arts Center in Connecticut. Maria’s unseemly intellect and ambition earned her the nickname, La Mala in her hometown in Mexico, and has earned her an MA and an MBA here in the United States, where she has created a beautiful family as well as her own successful Biotech consulting company.

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You can read Maria’s unforgettable short story, Not So Great Expectations, by following this link to Typehouse Literary Magazine.

And while I’m doing all this promotion, I might as well prompt you, gentle reader, to buy Issue 30 of the literary magazine 34th Parallel, which features a short story of mine, Chorus of Exes. 

Those are my pats on the back. My next entry, I promise, will be about the cat in the yoga studio. It might even be about MS. (This is an MS blog, after all.) I know this much about cats: it’s not a good idea to keep a cat waiting. And I know this much about MS: I’ll keep MS waiting just as long as I can.

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If you are a fan of the blog, please consider following this link to endorse me as a “Patient Leader” in the WEGOHealth Awards. WEGOHealth is the world’s largest network of Patient Leaders, working across virtually all health conditions and topics. I would love the opportunity to broaden my reach even further. Help me out if you agree!