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.

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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!

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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

Temple of my Daydreams

Let me take you with me to the place my mind returns to, several times each day—the restored Buddhist Temple and current AirBnB tucked above the beach in Laupahoehoe, on the Big Island of Hawaii. It stands maybe a five minute walk away from the rocky shore where my husband’s ancestors arrived from China. I could not have asked for a better place to spend the last few days with our son before he embarked on his new adventure: a two year gig in China.

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The rental car places on the Big Island didn’t offer hand controls on their vehicles. This meant I never had to keep my eye on the road. I got to stare out the window and seek glimpses of the ocean  as our shiny red Jeep would peel off the Belt Road and descend onto Laupahoehoe Point Road.

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The Jeep would rattle. Our son, sitting shotgun, would firmly remind his father, “Fifteen miles an hour,” as we approached another blind curve.

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We would pass hand painted signs. Slow Down. Don’t Spray.  When I would catch sight of the bridge, my heart would expand with anticipation.

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It won’t be long, now.

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I can see the minty green Jodo Temple up ahead, tucked just beyond another hairpin turn as the road descends ever closer to the shore.

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We arrive at last.

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Outside the Jeep, we can hear many bird calls unfamiliar to our ears. We can hear the faint steady pounding of the ocean. A white wicker stool on the porch contains a sign reminding us to leave our shoes outside. Mahalo. Thank you.

We see a cat or two or five skulk past. We rarely see the caretakers. They are as silent as shadows.

As magical as it is outside, I am elated to go inside. Something—no, everything—about this house soothes me. The furniture consists of an eclectic mix of state of the art lighting and kitchy beach-casual tag sale treasures. I, who have little tolerance for tchotchkes, am deeply enchanted by each object.

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When we first arrived, whooping with delight over the character and charm of the place,  I hadn’t even made it through every room in the house before I caught myself thinking, “How can we get back here?” My desire to seal it all in my memory was immediate, and fervent.

My practice of going through each room in my mind began before I even left the place. I made it a habit to flop on my bed and stare up at the wire and crystal light fixture hanging in the corner, then close my eyes and attempt to recreate the lamp in a mental picture. I’d be disappointed, every time I opened my eyes, by my inability to create and maintain a mental impression which matched the reality of what I had just seen before me. I lamented the paucity of detail I could expect from future memories far from here.

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It is probably too late in my life for me to become a materialist. But if I could be converted, it would be through the carefully curated fabrics of each soft blanket, each sun-faded curtain I encountered there.

 

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This BnB has no air-conditioning, which would usually pose a problem for me, as my MS is heat sensitive. I didn’t stop to check for this feature, for any feature, before booking the place. I scanned through the images of gleaming wood floors and a private, sun lit yoga studio above the tempting headline—Peaceful, former Buddhist Temple—and I was hooked. I had to book. Immediately. Who wouldn’t want their own freakin’ yoga studio just upstairs from their living quarters? Everyone, right? It was only after I’d entered our credit card number that I noticed the place had no kitchen, just a well stocked snack station with a refrigerator. When my husband asked, “Does it have a bathroom?” I’d snapped, “Of course it does,” desperately scanning the text I’d neglected to read in my haste. “It has one and a half bathrooms, as a matter of fact. An outdoor shower. And a clawfoot tub.”

This lovely place would reveal many more amenities over time. Such as, our own private waterfalls. More on that later. First, I will have to take you on a tour of the yoga studio. You will need to meet the yoga cat.

 

Thirty Years of Living With Multiple Sclerosis Hasn’t Been A Walk In the Park.

Saturday, I walked through four parks. I did not walk alone, or unaided. My husband and son were there to give me an arm when necessary. My REI poles gave me the superpower of two added appendages.

When I first got my diagnosis, my fear of disability was entangled in a fear of losing access to wild places. I didn’t want my travels circumscribed by smooth asphalt. Give me rocks, sand, dirt trails. Saturday, all four mediums were at my disposal as we explored the Big Island of Hawaii.

My husband and I greeted the sunrise at Laupāhoehoe Point, the rocky shore where his grandfather first arrived from China.

It felt right to be there. Our son has accepted a two year position in Beijing. In a few days, he’ll be flying to his new job / ancestral home.

After visiting the point, we returned to our lovely AirBnb, a renovated temple, where our son could justify sleeping in as his preparation for Beijing time.

I unwound with some yoga.

The ocean breezes skimmed across the room and cooled my skin.

Then whole family set out for Waipio Falls.

The falls were stunning. But I forgot to take a picture. I was a bit rattled.

My husband was very keen on driving down this, the steepest slope on The Big Island, to get us to the falls. He’d rented a Jeep for the four wheel drive.

I’d imagined he’d rented the Jeep because his poor disabled wife couldn’t make it down this long perilous incline on foot. But no. Driving down a one and a half lane mountain road at 70 degree incline turned out to be his idea of fun. The road was so narrow, one vehicle had to fold its side view mirror to passu us. We made it through.

Our next stop was Akaka Falls.

The windy paved walkway around the falls gave us easy access to breathtaking views.

We wrapped up the day strolling through a lovely park in downtown Hilo.

I wish someone could have told me when I was first diagnosed that my days of access to beauty and wonder were far from over.