MS and exercise

Hard to Swallow

Location: Elephant Walk

Time: Another Monday night after a weekend of mass shootings

My husband and I are in our local Ethiopian/Indian restaurant. The owner is from India, his wife from Ethiopia. We are the only diners.

We’ve been seated at our usual booth. The sky outside is a vibrant post-thunderstorm blue, which reminds my husband of the skies in friendly Hawaii. We are far from friendly Hawaii. We are in Cincinnati, Ohio.

I am not seated on my usual side of the booth, facing outward. I am seated on my husband’s spot, the side facing the television. CNN is reporting on the latest mass shootings in Dayton, OH, and El Paso, Texas. Not Houston and Michigan, Uncle Joe. Not Toledo, President Trump. Dayton. El Paso. Say their names.

Protestors in Dayton are drowning out the meaningless thoughts-and-prayers speech our governor is attempting. “Do something!” The crowd roars. “Do something!”

Anyway.

As we wait for our meal, I mention that our son, who is midway through a two year contract in China, has posted on Instagram that he is not looking forward to returning to the United States.

I confess that I’d considered writing, “Then don’t return. I’d rather you live somewhere safer than somewhere closer.” But I hadn’t. I was too afraid a reply like that would manifest a cosmic comeuppance, in which our son settles somewhere with sounder gun laws (that would be anywhere) and somehow ends up getting shot. I have a lot of spooky superstitions about the power of the words I write. I am fearful they will manifest in some dark fashion. I long ago came to the conclusion that Trump has far too little accountability for the dark manifestations of the hateful words he tweets. And now this.

I am the usual subject switcher in our marital conversations. But everything is flipped tonight, so it’s my husband who switches the subject. He asks me about my morning physical therapy session. I tell him it was quite a workout.

“What did you do?”

“I swallowed. Eighty times.”

He laughs.

“You mean you sat in a room with someone and she watched you swallow eighty times? That sounds boring.”

“Boring? It’s suspenseful. You try five dry swallows in a row.”

My husband is on the other side of the swallow spectrum. If offered a glass of water with his Tylenol, he will invariably turn down the water, and take the Tylenol dry—whereas I seem to require half a glass of water at minimum to get a Tylenol down. He blithely accepts my dry swallow challenge. His first two dry swallows go easily, as we’d expected. The third swallow is an effort. The fourth is a struggle. The fifth swallow is…as painful to watch as CNN.

“That wasn’t as easy as I thought it would be.”

“I tell you, it’s a workout.”

My husband is the reason I’m going to swallow therapy. I’ve gotten in the nasty habit of choking during our meals. When he’d told me he was considering taking a CPR class, I’d told him that my friend M., who also has MS, had managed to improve her swallowing through physical therapy. He was all for my signing up.

His appetizer arrives—five pieces of ayib begomen—which are usually stuffed with collard greens but today, opposite day, the ayib begomen is stuffed with cabbage and mushrooms. He invites me to help myself to a piece.

To qualify for physical therapy. I’d had to drink barium “juice,” eat barium “applesauce” and down a barium “cracker.” It was all very cinematic.  There was a doctor to film the process, a doctor to narrate the process, and a technician to be—I don’t know, be the “gaffer” or “best boy”—one of those roles that are far down on the credits. I, of course, was the star/villain. It was revealed that when I made the motions of swallowing, I was actually stowing quite a bit of residue in my throat. The narrator doctor, the David Attenborough of the whole production, concluded that my tongue was weak.

Ouch.

I’ve never been accused of having a weak tongue before. A sharp tongue, yes. Back in the day. Never a weak tongue.

To make matters more menacing, my tongue was deemed more weak on one side than the other.

Twisted.

I taste today’s version of ayib begoman: I am a big fan of the usual collard green filling, but I appreciate the how the substitute cabbage cuts a subtle counterpoint to umami goodness of the substitute mushrooms.

Thanks to swallow therapy, I am paying attention as I chew this food. I realize my habit would be to stash half of a mouthful in my cheek, like a squirrel, and then swallow the other half. Not this time. I swallow both halves: a nice, forceful swallow. I imagine my therapist saying, “You’ve got this!” Rather than chase the ayib begoman with a demure little sip of water, as is my habit, I swig a big hearty gulp of water. Then I pat myself on the back. Yes, I do that. If I achieve something that requires a little push, I give myself a little pat.

My husband looks at me quizzically.

“My therapist tells me to think of each swallow as a push up. I just did two pushups.”

He says, “Good job. You’re not even talking with your mouth full.”

I share my revelation about my chipmunk habit. “So technically, all these years I’ve been talking to you with my mouth half full.”

It would be terrifying to blame my difficulty swallowing on multiple sclerosis. So I don’t.

If I blame my own bad habits, I can do something.

The proprietor is staring at the protestors on the screen, who are chanting in Dayton, forty-eight miles away.

Do something. Theme of the day.

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The Cold Keeps the Riff-Raff Out

IMG_9548I probably should not admit this; under certain circumstances, I do give up. I give up on big things. Things I love. Things that define me to myself. A few months ago, I gave up on swimming at the YMCA.

Swimming is one of the few cardio-vascular exercises still open to me; as I explained in an earlier entry (That Which Doesn’t Kill You) I have to avoid raising my body temperature. Any time I get too hot, my multiple sclerosis symptoms rear their ugly heads. It gets kind of tricky to keep fit while also keeping cool. Exercise isn’t about keeping cool; exercise is about burning calories. “Feel the burn;” that’s the mantra. Problem is, when I feel the burn, it means I’m about to go down.

I’ve found all sorts of ways to work around this hitch. I can use the weight machines at the gym; I simply lift the lightest increments. I walk over to the water fountain after each machine, and take a drink to avoid overheating.  Then I go on to the next machine; perform my repetitions. Rinse. Repeat. My system works. I do get toned. I don’t get overheated. There is just one flaw. I do get bored.

I am not about getting bored. I am all about joy. Did I say exercise is about burning calories? That’s a boring way to look at it. Exercise, at its best, is about celebrating the body, at its best. Exercise is an act of joy.

For me, the most joyous form of exercise is swimming. My husband calls me a mermaid, because even on those days when I cannot walk, when I cannot put one foot in front of the other, I can still swim. Being in the water levels the playing field. The water exempts me from negotiating my balance. It exempts me from gravity. I know why the dolphin grins.

After all this waxing rhapsodic over swimming, you would think that nothing would stand in the way of me and a swimming pool. Let me introduce you to the women of the YMCA locker room. Gentlemen, avert your eyes.

My first impediment was an aging Southern Belle, who introduced herself by stating, “You’re not from around here, are you.” She asked me for my name, and my birthplace. I told her I was born in the Bronx.

The Southern Belle stiffened. I added, I thought helpfully, “Bronx, New York.”

“Oh, I guess that’s all right.”

A few visits later, The Southern Belle grilled me again about my birthplace. The first time she’d asked, she’d been poolside, looming over me as I backstroked. The second time, I had just stepped out of the shower in the locker room. The Southern Belle apparently felt very comfortable in the locker room. As she was asking me about my birthplace, she was languidly applying her hairdryer to her billowy private parts. Startled, I averted my eyes. I towel dried and dressed as quickly as possible. The hairdryer droned on. I could not help but notice as I passed The Southern Belle on my way out that she was still aiming her hairdryer where the wind should not blow. I checked the clock on the wall. Eleven thirty.

Let me tell you something about the daytime YMCA regulars. They are creatures of habit. I am not, and can never be, a creature of habit. I am not, and can never be, a “regular.” I am a creature with brain shrinkage. I could not be tethered to a schedule, even if I wanted one. When I plan, MS laughs.

This YMCA regular was getting in my way. I figured she couldn’t possibly linger at the YMCA all day. The Southern Belle had to eat. By the looks of her, The Southern Belle had to eat quite a lot. She would likely take a break for lunch. I would no longer go to the Y in the morning. I would go instead at noon.

This plan was brilliant. I encountered The Southern Belle on her way out.  We were both fully dressed. She may not have recognized me; she didn’t ask me where I was born. I changed and showered unmolested by her questions; and arrived at the pool—with all the other lunchtime swimmers.

I waited for a free lane. One swimmer was gracious enough to offer to share his lane. I accepted.

I like to lose myself when I swim; I’m pretty sure I’m not unique in that regard. I knew what he was giving up. I tried my best to be a good neighbor; to keep to one side, to keep a pool length between us. All that neighborliness was exhausting. The man was a shark. He never stopped moving. I often outlast fast swimmers. I figured, if I just held out, I’d eventually have the lane to myself. Then I noticed the waiting swimmers still poolside. Not a chance.

Maybe going to the YMCA at noon was not such a brilliant idea, after all. I remained undeterred.  I could always go in the early afternoons.

Little did I know I would encounter an even more terrifying locker room adversary; an adversary who could get into my head. I feel almost guilty introducing her to you, because she’ll get into your head, too.

But maybe she needs no introduction; chances are, you already know a version of her. Perhaps you are a version of her. She is The Suburban Soccer Mom. All she does is judge. And judge. And judge.

Oh yes, and one other thing; The Suburban Soccer Mom never shuts up.

My first early afternoon swim went…swimmingly. I’d had a lane to myself. I could shut out awareness of all the other swimmers, but better still, I could shut out all my own thoughts. Swimming is my moving meditation. My mantra is simple…I count as I stroke. One. Two. Three. Breathe.

I headed to the locker room showers, dripping and peaceful. And then I heard a strident female voice.

“He’s says the kids should be there to have fun. I’m sorry, but if my daughter were winning a game every once in a while she’d have a lot more fun. Correct me if I’m wrong. Is there something not-fun about winning? Isn’t winning the point? Am I wrong, here? Am I wrong?”

A second, softer voice responded eagerly; a voice so soft I couldn’t hear a pandering word.

I stepped in a shower and turned on the water, hoping to drown The Suburban Soccer Mom out. I tried to regain the calm I’d felt after forty-five minutes of laps, of forming no words in my head besides “one, two, three.” I lingered in the shower a bit longer than usual, giving the Suburban Soccer Mom ample opportunity to exhaust her case against her daughter’s fun-loving/fun-destroying soccer coach.

As it happened, by the time I was done with my shower, The Suburban Soccer Mom was done lambasting her daughter’s soccer coach. She’d moved on to lambasting her father-in-law.

“He expects me to feel sorry for him because he just had back surgery. Why should I? It’s his own damn fault he needed the surgery. He’s too damn fat. His spine couldn’t take it. No surprise there. He should have gone on a diet. He should have gotten off his fat ass and exercised. Instead he runs to a doctor. You want to know the real problem with health care costs in this country? People are too damn lazy. They’re too damn lazy and they’re too damn fat. They overeat, and then they transfer the burden to the rest of us.”

I had to pass The Suburban Soccer Mom on my way to my locker. I didn’t give her glance. I try to avoid looking directly at the other naked women, with the presumption they might extend the same courtesy to me. Even though I didn’t look at The Suburban Soccer Mom directly, there are things I can tell you for certain about her appearance. The Suburban Soccer Mom is blonde and trim, though perhaps no more trim than I am. I can also assure you she must appear perfectly, unassailably normal. She couldn’t possibly tolerate herself otherwise.

I could not help but look directly at The Suburban Soccer Mom soft-voiced companion; she was cowering in front of my locker. The soft-voiced companion was soft-bodied. Her eyes bulged out in terror at the sound of the word, fat.

Once again, I found myself changing into dry clothes as quickly as possible to make a speedy exit from the YMCA locker room. I pitied the The Suburban Soccer Mom for her malady; an unrelenting/unremitting chronic illness that was causing her to assume she is surrounded by inferiors. If only she’d leave off judging everyone, she could be a happier person. If only she was more like…me.

On subsequent visits I heard subsequent rants. When The Suburban Soccer Mom was in a good mood, she’d alternate her judgments of other people’s failings with reports of her own successes; the laps she’d swum, the triathlons she’d won. According to The Suburban Soccer Mom, the world would be a much better place if we would all be more…like her.

And that’s how I ran afoul of The Suburban Soccer Mom. One afternoon she happened to notice that I am not at all like her.

That particular afternoon, I was fighting against fatigue. Fatigue is one of the toughest elements to deal with in MS. It feels like a personal failure. The Suburban Soccer Mom in me told me to drive to the YMCA and do my laps, though The Henry’s Mom in me thought I should save my energy so I’d still have enough vigor to pick my son up from school, to snack with him, to talk with him, to walk the dog with him, and after all that, to make the family dinner. I compromised. I decided to still swim laps, but only for fifteen minutes.

As I stashed my street clothes in the locker room, I heard The Suburban Soccer Mom announcing to the assembled that she and her daughter would be going out for a jog. I happened to return from my fifteen-minute lap swim just as The Suburban Soccer Mom was announcing to those assembled that her daughter had just texted to cancel their jog.  Oh, Sububran Soccer Mom’s daughter, wherever you are, I took the bullet for you that time. Your mother looked up from her cell phone, and found a target in me .

“Well, that was the shortest swim I’ve ever heard of.”

That was it. That’s all The Suburban Soccer Mom said. Yet I didn’t go back to the YMCA for two months. The next time I felt fatigue, I stayed home. And so on, for almost three months.

I shouldn’t bother to spend any more energy dissecting what is wrong with The Suburban Soccer Mom. I ought to figure out what the heck is wrong with me. I gave up something I loved to avoid someone I hated. Maybe I ought to do a little less hating. Maybe the prescription I’ve been writing for The Suburban Soccer Mom is prescription I ought be writing for myself.

I’ll have you know that on Friday I did return to the YMCA. There was a notice posted on the front door, regretfully announcing that though the lifeguard was on duty, the pool heater was broken.

Perfect. I learned a folk saying back in the days when I lived with the good, decent people of Minnesota. The cold keeps the riff-raff out. Sure enough, the pool was empty. I could swim in any lane that I pleased, for as long or as short a time as I pleased. Better yet, the locker room was empty, too.

I’ve got to go. The pool is only open another hour. I’ve got to get in my fifteen minutes of laps.

author’s note: On the drive home from a cold, solitary swim, I heard this thoughtful discussion about judging the judger on NPR. Listen and learn: http://www.npr.org/2011/01/10/132809627/concrete-ways-to-live-a-compassionate-life

For my review of “12 Steps to a Compassionate Life,” the book under discussion on NPR that day, connect to Goodreads http://www.goodreads.com/review/show/144053847

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If This Callus Could Talk

I was moving my index finger back and forth from the tip of  Dr. W’s index finger to the tip of my nose—a rote task in a neurological exam—when Dr. W. caught my right wrist and asked, “What’s the story behind this?”

There was a callus between my thumb and forefinger.  “I got that kayaking.”

The story of the kayak trip is more than the story behind the callus. It’s the story behind my marriage. That’s my husband’s take on it, anyway.

The weekend before our twenty seventh anniversary, my husband and I decided to venture out to the west side of Cincinnati to kayak. We decided against the familiar lakes, with their predictable views, and opted instead to rent from an unfamiliar kayak outfit on the Miami River. Perhaps we didn’t read the description of the activity too carefully—or at all.  On arrival, I overheard my husband ask, “How will we know we are at the turning point?” I didn’t linger for the answer. I was heading for the Porto Potty. I figured my husband would receive all the information we’d need.

A very nice older man drove us to the launching area. A very nice younger man set us up with a two person kayak and two life jackets. And we set off down the Miami River.

The kayaking was bliss. Blue sky. Bird song. We spotted a Great Blue Heron, my favorite. I marveled at how easy it was for my husband and I to kayak together, how adept we were at paddling, how in sync in both movement and observation. The weather was cool for the first time all summer. We wouldn’t have to worry about overheating triggering my MS symptoms. As time went on, I took off my life jacket to ensure I wouldn’t overheat. My husband started splashing my neck. We laughed. We rowed.  We saw a bridge ahead. We knew we had two bridges to cross under before the end of the route. I was getting warmer. I asked for a swig of water. Not five minutes later, I had to pee.

An observant reader may be perplexed: didn’t Ms. Lab Rat just use the Porto Potty three paragraphs ago? What’s the deal with her having to pee? Is it MS, is it old age, is it childbirth? Maybe it’s all three.

In any case, we didn’t know how much distance was left between Bridge One and the turning point. We decided we’d reached our own turning point.  It was time to head back.

As soon as we dipped in our oars, we discovered that paddling upstream would be much more rigorous than we’d imagined while paddling downstream. We briefly wondered why the kayak outfit hadn’t pointed us upstream first, to conserve our energy for the tough stuff at the end. And then we quit wondering. We had to use all of our strength to  paddle. Some areas were difficult. Others…impossible. More than once, we experienced the degradation of getting  pulled backward while paddling all-out. We carried the kayak over one rough spot. My husband got up and pulled me through others.

At one point, I had to laugh. My usual work-out ethic has been tempered by multiple warnings from eye care professionals that my left retina is strategically poised to spring out the instant I over-strain. As we paddled upstream, I overstrained aplenty. It’s a wonder that retina didn’t pop. I kept catching myself making bizarre, grotesque facial expressions, as though baring my lower teeth plus rolling my upper lip plus flaring my nostrils plus straining my neck was somehow going move the paddle any faster. I’m going to hazard a guess that my husband also had his moments of unnecessary energy expenditure, like those times he was paddling so hard, he had the boat rocking side to side. As we rocked, I felt useless. Worse than useless. Like unnecessary cargo that could easily jettison.

As we rowed back up the way we came, we passed other kayakers, all of them blissful, laid  back. All of them paddling downstream. They were playing. We were working. Distances easily crossable on foot appeared nearly impassable by kayak. We studied the current, strategized our route—hug the shore here, avoid the rocks there. Toward the end, we agreed to cut straight across the river, and row toward the far side of an island. We made better progress than we anticipated. There on the island was a gathering of Canadian Geese. Spectacular creatures. They looked mildly surprised to see us, but not at all threatened. Yep. We were too pathetic to spook a goose. And too tired to wield a cell phone and take an Instagram. Instead, we focused on rowing steadily to the launch point, trying to make it look as though we’d been rowing steadily, in unison, all along. Oddly enough, there was no one on the banks to witness our show of fortitude. Our kayak nosed onto land unheralded. The very nice younger man was nowhere to be found. My husband pulled the kayak inland alongside its mates and threw our life jackets in the pile and called the number for the kayak rental outfit. They were as surprised as we were that no one was there at the end point to meet us. They told him they’d call him back. A minute later, my husband got the phone call that explained all. Apparently, we weren’t supposed to have turned around—the kayak route went one way only. If we’d just continued paddling downstream, we would have quickly and effortlessly made it to the end. A very nice young lady drove out to pick us up at the launch point. She said, “You must have worked hard.” We needed to hear that. “We’re so sorry. We must not have communicated very well.” We needed to hear that, too.

For me, the trip was a victory. I hadn’t peed my pants. I hadn’t lost my retina. I hadn’t been jettisoned. My bar for victory is comfortably low.

On the drive home, my husband suggested I write a blog post about the kayak incident. He saw it as a perfect metaphor for how we are accustomed to working harder than every other couple, because we are constantly pushing back against MS.

I see a different metaphor. He and I should relax, and go with the flow.

p.s. A big thanks to all the readers who have voted for me in the #WEGOHealthAwards. If you haven’t yet, there’s still time. Follow this link.

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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.

upstairscloser to temple

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

sideglance

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.

cataround temple

The temple itself was inhabited by a black cat.

waiting cat

This cat is apparently very used to partnering in yoga.

yogacatat fe

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:

oldroad

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.

sticksonoldroad

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:

1

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

wfall2

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

roadback

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.

Flummoxed (Part 4 of 4)

My friend Monica also has MS. She does not medicate. Which is not to say she does not treat her MS. Monica chooses her activities carefully. She exercises every day. She chooses her food carefully, following a Wahls-like diet, or what some of us call an auto-immune protocol. (AIP) Monica is also an exceptionally kind and gentle—non-inflammatory—person. (Am I implying MS is an expression of a personality defect? I hope not. I’m just observing that it’s hard to create a spark without any friction. Every life has friction. Monica seems to have a talent for not creating any friction, herself.) Monica never tries to talk me into living medication-free. I never try to talk her into taking medication. (I might have made a recommendation to take Singular, an allergy drug that has been shown in the lab to transform the brains of old rats into brains that function like young rats. But that’s for another post.)

When Monica texted to ask what our neurologist had to say about my rash, I wrote, “Z says he will support my decision even if I stop taking FDA approved drugs. But it’s such a tough call. If I’m wrong, and I get an exacerbation, I’ll blame myself. If overheating on this drug gives me an exacerbation, I will also blame myself.” I was perhaps exaggerating  (or as we as say in my family of origin, ‘over-exaggerating’) when I texted about the perils of overheating. Overheating merely creates pseudo-exacerbations, or transient worsening that last until the MS host cools off. Pseudo-exacerbations sure feel like the real thing, but they don’t bring on permanent damage (as far as we know.)  You see how Monica and I are opposites? Even after years of daily work to mellow out, I still have a tremendous talent for creating friction out of thin air.

Monica texted, “Yes, it’s a tough decision. Think we should decide not to blame ourselves either way. I will always support you, wwld* :)”

*wwld is of course short-hand for what would Lisa do? Feel free to sprinkle this liberally all over the internet, like lesions on an MS MRI.

Note that when I texted that I’d decided to drop the Tecfidera, Monica didn’t text back, “told ‘ya so,” or “welcome to revolution against rapacious Big Pharma” or anything. The Lisa she knows is a much better person than Ms. Lab Rat.

Her sweet response was not at all surprising. I didn’t expect to get any guff from Monica. The guff, when I got it, came from an entirely unexpected quarter.

 

 

 

Flummoxed (Part 3 of ?)

I get a phone call from my youngest sister, PYT, a.k.a. Pretty Young Thing, just as I am flopping down in the driver’s seat after a lightweight workout with my toys at the gym.

PYT has three Young kids, four and under, who are competing with me for her attention. I win. Intermittently.

I tell her I’ve capitulated. I’m taking my new MS drug just as the doctor ordered, thirty minutes after an aspirin. “I splurged and got myself the kiddie kind.”

“The orange ones? The chewables? The ones that taste like mom loves you and everything is going to be OK?”

“Exactly.” Oh, it is great to talk to someone who knows precisely what the aspirin summons—not only the specific taste, but the specific aura our mother would convey while doling it out.

Now that I take Tecfidera after an aspirin, and a meal with a bit of fatty food—I love my avocado, I love my coconut milk—I don’t get a rash. Or an allergic reaction. Whichever. Dr. Z. had warned me it might take weeks for the rash to stop flaring up. The rash had stopped immediately.

And yet. I don’t trust the lack of rash. You know those times when your room is a mess and your mom has threatened to inspect and you shove all your miscellaneous underwear and books and socks and chewed pencils under your bed, and it’s still a mess but it’s a hidden mess? Well, PYT and I never did that. The hidden mess was our middle sister’s speciality.  (She’s the pragmatist of us three.)  Our  messes were always flagrant—out in the open. And no, we never got points for honesty. But we’d always thought we ought to. Go ahead, roll your eyes. This is not a sentiment I’m proud of.

Am I the same person now? Hell, no. I suspect I’m not the only person with MS passing (less and less often) in public as able-bodied while actively concealing I’m a total hidden mess.

PYT knows me, the past me, the one who’d railed against the hidden mess. She gets my reservation that maybe taking the aspirin is just the same as shoving a mess under the bed. Does the aspirin genuinely alleviate my body’s resistance to the drug, or does it just push the resistance under the surface, where it can’t be seen?

We ponder this distinction as my four year old nephew explores the new paint he’s created by reconstituting dried out markers and as his twin sister mixes that paint with an entirely unacceptable color and as their younger brother decides it’s time to pee.

We wonder if the new drug is even worth it, given the conclusion of the meta-analysis of over 28,000 MS patients from 38 clinical trials that most current DMTs (Disease Modifying Treatments) are fairly useless for the average patient by the time they reach my age. We ponder Dr. Z’s point that I might be an “outlier” — which sounds kind of cool — unless “outlier” means that without drugs I might be the one to get hit with an exacerbation that could permanently disable me further. His distress over this possibility is nothing to dismiss. I’ve looked around his waiting room. Not everyone with MS has the luxury of describing themselves as a hidden mess.

I share the latest conclusion about the three types of MS—which is that relapsing/remitting, secondary progressive, and primary progressive MS are not three different diseases, but rather, three phases of the same disease. The FDA approved DMTs may prevent relapses, but do nothing for other processes known as “compartmentalized inflammation,” which do not show up on MRI’s.  These are the messes under the bed, so to speak. Or more specifically, the messes inside the cells.

We speculate that maybe all those years I had credited Zinbryta for stopping my MS attacks, the change could have really been more of function of my slipping insidiously from relapsing remitting MS into a more progressive phase of a disease, where the breakdown can’t be detected by the MRI, but rather, by the lumbar puncture.

“It’s like a vicious dog that hasn’t bit anyone in twelve years on a muzzle, and I’ve credited the muzzle. But maybe the dog has just mellowed out with age.”

PYT chimes in, “And maybe the muzzle has been annoying for the poor dog.”

PYT and I are both dog lovers. We aren’t fond of muzzles.

I say, “Maybe we just have to be realistic about my MS. It’s a progressive disease. Slowly but steadily, I’ve been progressing. The drugs that work to stop relapsing remitting MS can’t do a thing about the kind of progression I’m experiencing inside my cells. Maybe it’s time to stop fooling ourselves by my taking a drug that only helps for an early stage of MS. I might be way past that phase.”

PYT says, “It sounds to me like you have taken your last Tecfidera.”

My flummoxed feeling is lifting. I starting to feel like myself again. (Talking with a sister will do that.) I share the last thing Dr. Z. said to me, “I will support you even if you don’t want to take any medication.”

His unconditional support means so much. PYT warns me that our mother and my husband will resist my urge to give up the medication. “As they should. They love you. They want to protect you.”

Protect…me? When we were growing up, I never cast myself as the damsel in distress. But that’s the role MS has forced me to play my entire adult life.

 

 

 

The Yoga Groove

welcome

My long time yoga teacher, Sharon Byrnes, just started two new classes for people with MS and Parkinson’s at her studio, The Yoga Groove. Today I was lucky enough to have a one-on-one with her, so I got to call all the shots.

My body has given me a pretty long to-do list. I’ve been wanting to take a class on how to fall since learning that I have severe osteoporosis. (I was so eager, in fact, that I showed up one month early to  “Free from Falls,” a class which will be offered by the MS Society starting March 6.)

I requested we work on fall prevention. Sharon started me working on transitioning through various yoga poses from against the wall, instead of from in the middle of the room, so that I could use the data from the wall to keep my shoulders, back and hips in alignment while moving from two feet to one foot and back down again. She gave me blocks, so I could safely extend my body and achieve more from each pose.

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foot drop

You will notice, in the second picture, that my foot droops down. Ideally, my foot and leg should be parallel to the floor. Ha. Ha. I know this is the Internet, but I’m still going to show it like it is. What you’re looking at is called foot drop. It’s an MS thing. When I’m tired, like I was this morning after treadmill and weights, I have to use extra effort to lift my right foot off the floor as I walk (or do yoga.) Foot drop has been a big culprit in limiting my walking. Until I got hand controls,  it even limited my driving.

I asked Sharon about foot drop. I’d seen what looked like a helpful video on YouTube…but I wanted to verify that the advice it gave was any good. Sharon watched me demonstrate what I’d remembered of the video, which entailed sitting in a chair, raising the foot, swiveling it in one direction over seven seconds, and then back in the other direction seven seconds…to be repeated over three minutes. She immediately made three suggestions: 1. to keep my ankles in line under my knees (I should know that by now!)  2. to use a resistance band (I tend to be lazy about adding props.) 3. to work out both ankles, not just the one that gives me trouble,  working right/left/right instead of working the right ankle exclusively.  Her suggestions affirmed what I have learned throughout the years: YouTube is no replacement for first hand experience from an experienced instructor.

She then got out a timer and had me tap my foot. I produced 28 taps in a minute, which was less than her 48, but not as far from the 32 taps per minute I should have for a goal.

After our session, I immediately texted my friend Monica, who is off having a grand time in New Orleans this week and couldn’t attend class. She wanted to know all about how to prevent foot drop. As Sharon remarked on my way out, students learn a lot from their teacher, but learn even more from each other. My one-on-one with Sharon was amazing, but I can’t wait for next week, when my peers will be there, too.

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Everyone Is Doing the Best They Can

The main perk of teaching is that I get to learn a lot from my students, who range in age from 18 to 96 years old. Last semester, one of my students on the younger end of that spectrum said something so profound, I’ve wound up repeating it to myself every day.  “Everyone is doing the best that they can.”

When I was that student’s age, I’d had the opposite response to those around me. I’d always been quick to call out posers, slackers and fools.

As the humiliations of my disease pile on, I find myself doing  many of the very things I’d formerly found inexplicable and utterly ridiculous. And that’s on a good day.

Take the treadmill. I’d never understood the point of it. As a writer, I’m fond of forward motion. You can’t do better than climbing a mountain to learn everything you need to know about a narrative arc. You can’t have a hero’s journey without setting off toward the unknown, somewhere beyond the horizon, preferably on foot, or at the oar. What self-respecting writer could prefer the tedium of walking or running indoors to the nonstop novelty of walking or running in the wild? Only a coward, or a terminal bore.

When my doctor discovered my bones are two standard deviations more breakable than the bones of a typical woman my age, she recommended I quit swimming — which she’d formerly lauded as the best form exercise — and instead try out the treadmill. She explained that I would have to submit to gravity if I were to ever have a chance at rebuilding my bones.

This is how low I have sunk: so far, the switch to the treadmill has been an adventure. My first day on it, I was grinning like a ninny at the novelty of elevating my heart rate. (Thanks to MS, I am confined to doing exercises at a rate that doesn’t raise my body heat: once the heat is on, the wiring in my brain blows out.) I only made it through five minutes. (And those last 35 seconds took some discipline.) I then tottered 15 feet to the ring of machines I’m familiar with—my toys!—and returned to my weight routine—low settings only, because strain could pop my retina. (Is this silly, or what?) I have since worked my way up to six minutes per treadmill session. And then I had my breast biopsy. I’d been planning to drive to the gym afterwards. Instead I was told to stay out of the pool (again?) and not lift anything over five pounds for that day. Theoretically, I could have driven to the gym for maybe six and a half minutes of treadmill, and the leg machines. Ha ha.  Instead, I opted to heal.

So yes, today, Gentle Reader, if you see a woman on the treadmill, she isn’t me. I ask you to see her as my student would see her. I ask you to assume that the woman on the treadmill is doing the best that she can.

Stay healthy!

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Steadier Together

As soon as I got diagnosed with multiple sclerosis (MS), I started practicing yoga…with people who did not have MS. Yoga is not a competitive sport, and I am not a competitive person, so I’ve never wasted any energy comparing my abilities to anyone else’s. It didn’t matter if mine was the wobbliest “Tree” pose in the yoga studio. Trees can wobble, in the right wind.

At no point did I feel a need to join a special class for people with multiple sclerosis. I was doing just fine, I thought, in the yoga classes at the Fitness Center, practicing with “beginners” ranging in age from early twenties to mid-seventies. But when I saw the flyer for MS Yoga in my neurologist’s examination room, I immediately decided to join that class, too. The MS Yoga class was free. I had nothing to lose. And besides, I liked the concept. Yoga has helped me, probably in more ways than I know. Wasn’t it nice that the neurologist was offering something positive that his MS patients could do for their bodies and minds? I saw my attendance as a yes vote to the whole idea.

I might have felt a bit apprehensive the morning of the first class…I’d met people with MS before, and most of them just brought me down. The only close friend I’d made with MS up to that point had had a sparkly, positive attitude…and the progressive form of the disease. She’d recently died, hopeful to the end.

The women I met at MS Yoga that morning were charming, charismatic, joyful, and curious. We started asking each other questions, and comparing notes, before Megan, our instructor, got a word in edgewise.

Did I like the class itself? Not at first. It didn’t seem remotely like any form of yoga I’d ever encountered; starting with the fact that Megan never even mentioned breath. To me, a yoga practise without breath is like a church service without prayer; every pose starts with breath, extends with breath, transitions with breath. If you don’t have breath, you don’t have life, and you sure don’t have yoga. But what our class did have, right away, was community; we were as fascinated by each other as if were all reunited siblings, separated at birth.

Our ending “Namaste” (“the light in me greets the light in you) would not be a goodbye. There was a lunch place two stories down from our ad hoc conference room/yoga studio. We all agreed to extend the party through lunch. We called out the high performers as we prepared to leave; “You can still balance on one foot as you put on a sneaker!” And as we went down the stairs, “You can walk without a banister!” We commiserated with the one who forgot her yoga mat and had to go back for it, “I forget things, too!” And the ones who had to rush off to the Ladies Room, “I have an MS bladder, too!” We peppered each other with questions over our salads and soups, universal ones, like, “Do you have any kids/grandkids?” As well as MS related ones, like, “Do you still work?” “Do you get social security?” “Where did you get that cane?”

After subsequent yoga classes, the lunches went on, and the confessions of various disabilities grew bolder; not every symptom was found to have a match. The confessions of memory loss were by far the loneliest; what was the self, without memories?

In the meantime, I grew frustrated with the classes themselves. What was yoga, without breath? When Megan finally told me her reason for withholding breath from the practice, her explanation shocked me. Apparently she’d been taught that handicapped people should not be “burdened” with such instructions. I said, “Everybody breathes.” The assumption that people with MS couldn’t handle breathing made for an insulting pedagogy. She took note. And stopped following it. Megan invited us to breathe in class, invited us to laugh. Classes got better, week by week.

One day, Megan introduced us to the Tree pose, that pose I found so challenging in my able-bodied yoga classes. In Tree, one must balance on one leg, and rest the foot of the opposite leg somewhere on the standing leg; perhaps on the ankle, the inner calf, or as high as the inner thigh. Megan proposed that we do Tree pose in a circle, while supporting our neighbors, palm to palm. This was a method we all could achieve. Instead of forming individual wobbly trees, we formed a steady grove.

As suddenly as the class was offered to us, the class was taken away. The department of Integrative Medicine gave no explanation. The UC neurologist who was involved with this program is seeking to reprise it, to this day.

On the last meeting of the MS Yoga Group, Megan closed with this poem by the Revered Sapphire Rose:

“She Let Go

She let go. Without a thought or a word, she let go.

She let go of the fear.  She let go of the judgments.  She let go of the confluence of opinions swarming around her head.  She let go of the committee of indecision within her.  She let go of all the ‘right’ reasons. Wholly and completely, without hesitation or worry, she just let go.

She didn’t ask anyone for advice. She didn’t read a book on how to let go  She didn’t search the scriptures. She just let go.  She let go of all of the memories that held her back.  She let go of all of the anxiety that kept her from moving forward.  She let go of the planning and all of the calculations about how to do it just right.

She didn’t promise to let go. She didn’t journal about it. She didn’t write the projected date in her Day-Timer. She made no public announcement and put no ad in the paper. She didn’t check the weather report or read her daily horoscope. She just let go.

She didn’t analyze whether she should let go. She didn’t call her friends to discuss the matter. She didn’t do a five-step Spiritual Mind Treatment. She didn’t call the prayer line. She didn’t utter one word. She just let go.

No one was around when it happened. There was no applause or congratulations. No one thanked her or praised her. No one noticed a thing. Like a leaf falling from a tree, she just let go.

There was no effort. There was no struggle. It wasn’t good and it wasn’t bad. It was what it was, and it is just that.

In the space of letting go, she let it all be. A small smile came over her face. A light breeze blew through her. And the sun and the moon shone forevermore.”

We have had to let go of the yoga class, but we have stayed in touch with each other. We are no longer individual w0bbly trees, but a steady grove.

 

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Reality Check

Early this morning, Dr. Z. said softly, “You have a very severe case of MS.” Dr. Z. is the most dapper neurologist in town. He was wearing yellow wool pants and a pastel striped tie and fancy orange loafers, the kind with the little pinholes. I’d dressed up in a floral dress and a purple scarf and a white summer sweater with pearly buttons. My hair was back behind a perky blue and white polka dot hair-band. The healthy façade was futile. We were looking at the MRI scans of the brain behind the hairband.

I couldn’t help but notice his use of present tense. I always say, “I used to have a severe case of MS.” Because my multiple sclerosis has been fairly well controlled since I first went an earlier formulation of the drug that is now being released as Zinbryta. I am able to live a full life; I do meaningful work, I exercise, I spend lots of time with friends and family.

“You have scores of lesions throughout your brain, and significant brain atrophy.”

It wasn’t news that I had a lot of brain lesions. For over two decades, MRI’s have revealed those lesions festooned throughout my brain with the all the density and regularity of Christmas tree lights.

But brain atrophy?

No neurologist had ever said the word, “atrophy.” Most doctors have emphasized the positive—how I present in person rather than how I present via MRI. I’m used to hearing, “You look great!” from neurologists and lay people alike.

Please don’t conclude that Dr. Z. was being negative. He wasn’t. He was being honest. Because I’d forced him.

What kind of patient goes on experimental drugs? The kind of patient who likes to experiment. And since Zinbryta is officially on the market, and I am no longer taking it for research, I’ve been restless to see what new way I could approach my disease.

I’d been telling Dr. Z. about how once, while at the NIH in Baltimore, I’d met another MS patient who’d also been on the original formulation of Zinbryta, way back in the days when it was delivered monthly through IV infusion instead of through a slender needle. As we two lab rats hung out by the MRI machines, we’d compared notes on the two formulations, and had agreed that while both versions of the medication were effective in stopping the progression of the disease, the earlier version had felt like it had shrunk the MS activity to insignificance.

Now I wanted to know, was there any chance Dr. Z. could prescribe the infusion?

There was not.

I then asked about the diametric opposite treatment extreme; some people I admired were treating their MS with diet and exercise alone. I have a great diet and exercise regime; was it possible that my lifestyle was responsible for my apparent good health? Could I possibly experiment with a medication vacation, once my supply of Zinbryta ran out?

And that’s when Dr. Z. said gently, “You don’t have any brain left to experiment with.”

Sometimes the truth hurts, at least for a moment. But in my experience, the truth is always more manageable than any lie. I thanked him. It was actually comforting to hear confirmation of what I feel, and conceal, every day. That every day I perform a thousand little miracles just to make it through.

Did I cry? Yes. In the elevator, a little. And one big sob in the car. But I was calm through the appointment.

Dr. Z. observed that medications alone were never sufficient for MS treatment. The patients he’d had on the best medication available to him still got MS relapses if they continued to make poor lifestyle choices.

We agreed that I had to stick to good lifestyle choices…and to the good medication that has worked for me thus far. I have (present tense) a very severe case of MS. Thanks to Zinbryta, I also have the luxury to expect that the next time I see him will be for a follow up appointment in three months, and not in a state of emergency during the MS relapse I can’t afford to endure.

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