Gentle Readers, a while back, the good people at Patients Like Me asked to interview me for a webinar about the benefits of participation in clinical trials. I am very busy writing a novel, so I told them I would not be devoting any extra time for preparation. I feel so lucky that currently my primary identity is not patient, but writer.
Every clinical trial moves us closer to a world where more people are free to pursue the goals they had before they got sick! Watch my interview below.
02/07/21: Gentle Reader, I am reposting All the Pee in China, part 1 because I am finally getting the courage to post All the Pee in China, part 2.
I haven’t written any blog posts for a really long time. I’ve had a good excuse. I had to pee.
I mean it. I’ve really had to pee. Multiple sclerosis causes my bladder to be both overactive—so much so that I rarely go ninety minutes without rushing to the bathroom—and under-active—so much so I have to use a catheter to completely empty.
Unrelenting runs to the bathroom have been not so good for my sleep patterns, not so good for my clarity of thought, and not so good for my travel plans. But that didn’t stop me from making travel plans. My son lives and works with his girlfriend, MC, on the other side of the planet. When this adorable couple invited my husband and me to stay with them in Beijing, there was no way we wouldn’t go. I love my son more than all the pee in China.
In the weeks leading up to the trip, every time I announced, “I’m going to China,” I’d feel mildly surprised I wasn’t asked, “How the hell will you manage that?”
Twenty five years of living with MS has made me pretty good at bluffing good health, but even I can’t bluff my way through frequent bathroom runs.
Hadn’t my friends noticed I rarely can get through a whole movie without excusing myself to run to the bathroom? Hadn’t my workshop students noticed me having to take bathroom breaks in the middle of ninety-minute sessions?
My anxiety about my bladder permeated all of my travel preparations. When I switched my language of choice on my Duolingo app from Spanish to Chinese, the first word to pop up on the app consisted two figures: the figure on the left looked to me like a distressed lady crossing her legs because she has to pee, obviously—whereas the figure on the right had its arms outstretched, blocking the distressed lady’s way. Yes, I have the magical power of turning a language app into an ink blot test.
The distressing ideogram was paired with a sound. My American ears heard the word: “how.”
I wondered how I was ever going to travel through China—not to mention to China—when I always have to pee?
The flight to China would be an overnighter. On ordinary nights, I get up four to six times to pee. I kept picturing myself seated in the middle of a long row, squeezing past passenger after passenger after passenger, disturbing their sleep—“Excuse me, Excuse me, Excuse me”—every 90 minutes.
And that’s what I could expect if conditions were optimal.
The sad truth is, I’ve been getting UTIs on a monthly, sometimes bi-monthly basis. For those of you who have never had a UTI: congratulations. UTI stand for urinary tract infection, or Unrelenting Torturing Incontinence. To add agony to the inconvenience, every time you pee with a UTI, it stings.
Chances of my getting a UTI during a two week trip? Between 50-100%.
Air travel with a UTI? Been there. Agony.
And even if I did make it through the overnight flight, how exactly would I make it through China? Our son wanted us to explore a few cities while we were there.
What would the public restrooms be like in China?
Our son warned us most public restrooms featured squat toilets. He advised us to practice squatting. I practiced. Our son mentioned most facilities were BYOTP—Bring Your Own Toilet Paper.
My husband had to talk me out of packing a roll.
I called my capable mother to air my anxieties. She has answers for everything. Worried about a UTI? Get antibiotics. Worried about having to pee? Get diapers. “They make diapers differently now,” she said. “More comfortable.” More comfortable than the ones she’d pinned on me in 1967? And possibly—ahem—larger?
Gentle reader, I got myself the antibiotics. When I ran out of time to procrastinate further, I drove out of town—out of state—to buy myself adult diapers. For double protection, I picked out overnight pads as well. I reminded myself that astronauts wore diapers. Who looks down on an astronaut? Nobody. Diapers could be seen as elite-wear for the long distance traveler. As I approached the check-out counter, I noticed I was the only customer. The cashier had no one to focus on but me, and those diapers, and those pads. My astronaut justification started to wobble. Wasn’t there some crazy astronaut lady who wore an adult diaper on a cross country drive to avenge a love spurned? Everybody looked down on that astronaut. I silently reminded myself that I had a longer trip ahead of me, and a better motive: a mother’s love.
As I set the items on the belt, I forced myself to make eye contact as I returned the cashier’s greeting. I hoped the cashier didn’t see a middle aged nervous wreck with MS buying diapers and overnight pads for herself, but rather a high strung, healthy woman performing the duties of middle age—buying pads for herself and diapers for her fragile old mother—a fiction that could only hold with a cashier who has never met my mother, who is generally the most robust woman in any room. The cashier conveyed absolutely zero shock or pity, enabling me to maintain my dignity. So I got through that purchase. How would I get through China?
I’ll tell you. China was nothing like I thought it would be. Let’s start with the meaning of that first character that popped up on my Duolingo app, the character that sounded like the English word H-O-W. It happened I would meet a friendly native speaker at a Beijing art gallery who would tell me the actual meaning of the word “Hāo.” As you may have guessed, the word has nothing to do with a distressed lady being blocked from accessing the bathroom by an obstinate man with outstretched arms. Hāo, she assured me, means “good.” Hão was also a part of her name.
Was my ink-blot interpretation of the figures in that ideogram something other than an instance of preternatural second sight?
Not so fast. Gentle readers, on my journey I would indeed meet an obstinate man who would physically block my way to the bathroom when I was in acute distress and had to pee. But I wouldn’t meet this imposing figure in China. I would meet him in the Toronto Airport.
During a 2012 visit to the National Institutes of Health (NIH), I met a very pleasant young intern who had recently abandoned a career in law to take up a career in medicine, all because he’d wanted to use his talents to make the world a better place. Apparently most of the lawyers he’d met in his former life had been miserable, self-centered creatures.
He hadn’t wanted to end up like them.
So far, the intern had found the people of the NIH to be far better company than the rapacious lawyers he’d fled from. The intern observed that everyone at the NIH was there for the public good, even the patients, people who were willing to undergo trials that may or may not directly benefit them, but which would most certainly benefit others. As the intern put it, the institution was filled with do-gooders, “from the bottom up.”
I did not resent the intern for classifying patients like me as being at “the bottom” of the NIH heap. I deserved that. I myself have made a similar observation about the outstanding qualities of the good people I meet at the NIH, although in my self-serving version, “the bottom” is occupied by the NIH cab drivers —a demographic consisting primarily of highly educated immigrants, like the driver who’d earned a medical degree in his former life back in a war-torn African nation.
I don’t take anyone’s status too seriously, including my own. Status is subject to abrupt change. Things can be going fine, and then along comes a war. Or a disease. There are many paths to the NIH, indeed.
I wanted the good intern to like me. I did not correct his assumption that my primary motivation for participating in the trial for DAC HYP was a selfless one. My actual motivation was anything but selfless. DAC HYP was the only drug I’ve taken that managed to stop the progression of multiple sclerosis (MS). When I’d heard it was being taken off the North American market, I’d panicked. I’d made a few phone calls, and tracked down the doctor whom I’d initially begged to prescribe it off label. Joining her study at the NIH was the only way I could continue to take a drug with a known benefit.
There hadn’t been any risk involved in joining the study that I hadn’t faced already. There wasn’t even a risk of my being placed in a control group and receiving a placebo. I wasn’t at the NIH to make the world a better place. I was at the NIH to continue to take a better drug.
From what I’ve overheard from other patients at “the bottom” of the NIH barrel, we are all there primarily for our own private good. Did we want our disease cured? Hell, yes. Getting to the NIH meant cutting to the head of the line. No one gets an NIH ID without having struggled for it, including those who arrive in a wheelchair.
Human beings are complex. As for those selfish lawyers the intern was fleeing? Maybe some of those miserable human beings do in fact inadvertently contribute to the greater good while in pursuit of those big fat paychecks. More power to them.
I’d like to imagine that should one of those fat cats one day get sick, and have to claw themselves to “the bottom” of the heap at the NIH, they would make their own contribution to the greater good through their rapacious pursuit of an elusive cure. The intern may think better of his former colleague should he meet that person as his patient. He may think that they have undergone some spirtual transformation. But they will be the same ambitious bastard they always were.
We all contribute to society in some way. Like the intern, I’d rather hang out with people whose positive contributions to the world are deliberate, and not inadvertent. Yet by now I’ve learned that no one’s motivations are as clear as we would like to think.
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:
I was shocked to see that the elevator was out at the Metro Station at the NIH (National Institutes of Health), of all places. We lab rats 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 a young woman using a wheelchair 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.
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.
Nothing ever goes exactly as planned in the NIH. This is an observation, not a criticism. Sometimes, a change in plans works to my advantage. When my husband and I arrived promptly for my seven a.m. appointment, I was told my eight a.m. MRI would have to be rescheduled. There weren’t enough technicians. My husband and I are adept at such situations. My body’s fickle insurrections have given us plenty of exposure to the changing of plans.
My first appointment was to review the revised consent form with the magnetically charming nurse Naomi. Within five minutes chatting over the forms she’d told me enough about life in DC for me to recommend Chimamanda Ngozi Adichie’s novel Americanah. As it turned out, Naomi had read that book and loved it, loved it so much she’d read it non-stop through a red-eye flight to Dubai, forgoing in-flight movies, forgoing sleep.
It was Naomi’s job to inform me that I would not be getting better care at the NIH than I could get at my local neurologist. I adore and admire my local neurologist. But I ask any of you with MS: does your neurologist have time to assess your condition for four hours? The level of care just does not compare. And more importantly, my visit to my local neurologist is designed to help only me. An NIH visit is designed to help multitudes.
Naomi told me I might be eligible to be paid $200 for my spinal tap. (There is usually no payment involved in a clinical trial, just reimbursement for food and travel.) I was open to this change of plans.
After I saw Naomi, I saw Dr. W. The last time I’d seen her, she’d been displeased by how easily she could push against my leg. She’d uttered one syllable, “weak.” I’ve been working on my leg strength ever since. This visit, I gave her sufficient resistance. But she simply gave me a new area to work on. “You have shitty balance. You can improve that. Practice!” I’d improved my strength. You can bet I’ll improve my balance
Dr. W proposed a change of plans even more extravagant than Naomi’s $200 compensation. She noticed I’d just had a spinal tap the year before. She consulted the timelines of the studies I’m in, and declared I wouldn’t have to have a spinal tap this year, after all. This piece of news was an order of magnitude more exciting than the prospect of a spinal headache, and two hundred bucks. “I am your advocate,” she declared. We fist bumped.
Next came the auxiliary scales. I performed the same battery of tests I always do—I did worse on some, better on others—all in all, it seemed a wash. Dr. W will be calling me next week when the data is in.
Further updates on this visit will have to wait until tomorrow. I am tired, my legs are crawling with electric pain, and my husband and I are planning to get up early and take the Metro into DC tomorrow to visit a museum.
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.
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.
Once I reached the pillars, this is a glimpse of what I’d see to my left:
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.
The temple itself was inhabited by a black cat.
This cat is apparently very used to partnering in yoga.
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:
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.
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:
A little farther along, we stumbled on a second waterfall.
My husband said, “All this for us? You’ve got your paved road in the wild. Our own private waterfalls.”
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.
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.
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.
The Jeep would rattle. Our son, sitting shotgun, would firmly remind his father, “Fifteen miles an hour,” as we approached another blind curve.
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.
It won’t be long, now.
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.
We arrive at last.
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.
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.
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.
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.
I was on the line at the post office when one of my local MS doctors, Sandra Parawira, called to give me the news before I heard about it through the media.
Zinbryta, the MS drug that has staved off my MS attacks for the last 12 years, had just been pulled off the market. A few Zinbryta patients in Germany, and one in Spain, were found to have developed encephalitis. Sandra urged me to come into the office to visit with her on Wednesday. If her concerned tone of voice hadn’t done enough to convey the urgency of the situation, the immediacy of my next appointment in her busy practice surely did.
But was I worried? Not particularly. I have NPR to thank. On my drive to the post office, I’d been listening to an interview with a medical researcher on Science Friday. The researcher, Dr. Kang, was promoting a new book about “cures” throughout history that had done more harm than good. As I listened to Dr. Kang recount Marie Curie’s fondness for the radium which would later kill her, I’d idly wondered which of the drugs or supplements I was currently taking would later be exposed as a toxin. Five minutes later, I got the call that the drug I’ve credited for giving me my life back has been taken off the shelf.
While I have my doubts that a drug I’ve taken safely for 12 years was about to give me encephalitis, I am still seeing this change as an opportunity. Many new players have entered the MS landscape in the 12 years I’ve been on Zinbryta. Perhaps the drug I’m assigned next will improve my life as drastically as this one did.