An App for That?

This wide and wonderful planet is not as handicapped accessible as it could be. Which leads to all sorts of conundrums for travelers who are in wheelchairs, or on crutches, or who just have to pee—now.

Is there an app for locating free, clean, accessible bathrooms? I want one. Until that day, I will simply follow the Golden Arches.  Gas station restrooms can be dicey. Highway rest areas are, in my mind, the pinnacle of civilization, but are prone to closure during state budget cuts. Which bring me back to McDonald’s. Again, and again, and again. Specials shout outs to the McDonald’s by the Arc de Triomphe and the McDonald’s in Waimea. Home is where they have to let you in.

I have another request of the App Gods. I want an interactive, updatable app to alert travelers with disabilities of situations like this:

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I was shocked, as was the lady in the photo above, to see that the elevator was out at the Metro Station at the NIH (National Institutes of Health), of all places. We’d been lulled into the feeling that we’d reached Oz and all of our problems were about to be solved. And now this. While believe I pointed the young woman in the direction of a working elevator, that could have been wishful thinking. The sun had just burst out from under a cloud, raising my body temperature, frying my neurological wires. So I was distracted. I had to pee. But in my distraction, I did wonder: why couldn’t Google Maps have a little alert that the elevator was out, saving this lady the effort it took to get here…and a little flag indicating the location of the next closest elevator? And that’s when my app idea was conceived. It’s still not fully formed.

Is this app a layer on existing apps that a disabled user can opt into?

Or is this a separate app? I know I love to read blogs about other people’s (mis)adventures traveling with MS, like the Xanax tinged travails of MSGracefulNot.   Wouldn’t it be nice if all the testimonials were in one place? That’s what the fine blog The MS Wire has attempted to do. Ed Tobias has compiled travel tips from his years of adventures, and has invited his readers to do the same. He’s started with some practical tips about traveling New York, with the hope of adding more cities in the future. It would be great to have folks check in from Ontario and Topeka or their own home town, with their praises of well tended sidewalks and/or their condemnations of doors within hospitals that can’t be opened without buttons. (Major pet peeve!) It would be great, on entering a new city, to have the dirt on the dirty bathrooms (I know, I know, I’m obsessed with bathrooms) and broken elevators from people who get it. It would be great to have travel anxieties dispelled by the knowledge that our peers have our backs.

Thank you for reading!

If you haven’t already, consider voting for my blog at the WEGOHealthAwards.

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Endorse Me! 

There is still time to endorse my nomination as a Patient Leader for the #WEGOHealthAwards. If I were to be selected, I could extend my reach  with movers and shakers in healthcare  to advocate for people with disabilities. 

If you haven’t already, please follow this link to navigate to my nominee profile at #WEGOHealthAwards. Under my picture on the right-hand side of the page will be an “endorse” button. Clicking this button will submit an endorsement. While you are there, take a look at some of the other outstanding candidates. As I understand it, you can endorse more than one person. If you know of an outstanding patient advocate in your community, you can nominate them here.

I am so thankful to The Clifton Writing Workshop members who sat through my first improvisation of this speech. And I am beyond thankful to my friend Maria Ramos, who directed and filmed the final product. If you like this video, please share!

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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!

My, oh my, How My Blogging Has Changed

When I first created Ms. Lab Rat, it was all about me. I didn’t think to read other blogs or comment on them, because I’d thought I had the big answer. I was participating in a clinical trial for an MS drug that seemed to have stopped multiple sclerosis in its tracks. I’d gone from having a really severe case of relapsing remitting MS to an MS in remission, and to a large degree, my life was restored to me. I’d figured, as soon as this drug hit the market, the MS community would be transformed. Everyone would board the Zinbryta rocket ship and we’d all blast off into recovery. That’s not what happened. Zinbryta, which was so helpful to me, caused a few cases fatal encephalitis in others, and was pulled from the market.
I was left with no answers. Just questions. Like, what drug would I turn to next? Or, could I treat MS exclusively through diet? I started reading other blogs, and learning so much about the incredible resourcefullness and resilience in the online patient community. These days, I value my time as a reader and commenter as much as I do as a blogger. I am thankful for all the other bloggers out there who are getting out of bed each day (or not) and taking the time to share their struggles and strategies. Faithful readers and commenters, I am grateful to you, too!
It’s been a journey.

“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 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!

WEGOHealth

I’ve been nominated for “Best Blog” at the #WEGOHealthAwards! These awards seek to recognize Patient Leaders who are making an impact with their advocacy. Learn more & vote for me today.

Like any writer, I’m a big believer in the power of story. Our culture right now is experiencing a bit of churn as those of us who have been historically overlooked, vilified, and ignored are getting out there and telling our own stories, without much invitation or permission.

I had a lot of fun at The Art Academy of Cincinnati last semester teaching Don’t Call Us Dead, a powerful book of poetry by Black, queer poet Danez Smith; Get Out, the subversive screenplay by Jordan Peele; and the Pulitzer Prize winning novel The Sympathizer, which was written by Viet Thanh Ngyen, an author who’d endured being separated from his parents as a child immigrant. (I know, I know: all men! The semester before I’d featured all women, so that’s the way the see-saw tipped.) As always, I’d urged my students to tell their own stories, and to share the stories that spoke the strongest to them.

In future classes, I would love to feature brilliant disabled poets, screenwriters, and novelists. I know they must be out there. (And maybe slowly getting published?) If you have any suggestions, add to comments.

Let’s lift each other up.

UPDATE: I just found my next poet, WordPress author Susan Richardson. https://burninghousepress.com/2018/06/23/3-poems-by-susan-richardson/comment-page-1/#comment-963