A Valentine’s Day Meditation On My MS Medications: 2021

I have five exes. Five medications I allowed to enter my body because I believed they would stand up for me against my nemesis, multiple sclerosis (MS).

One of my exes hurt me. One of them stood me up— then ran into trouble with the law the morning after our one-night stand.   One was nice, but ineffectual. One of them transitioned to a long distance relationship, then went on the market, then made me a widow.  The last ex was only effective at making me blush. I am currently unattached to any medication on the commercial market.  I do have a new partner, though, one I find very satisfying. Read on.

I hooked up with Avonex in ’96. Let’s say that Avonex was like that kid who impresses all the grownups with his good looks and good manners, then insults them all behind their backs.

Avonex was my first. He caused me nothing but pain.

The day I started Avonex, my breasts were rock hard, and weeping. I had made a sacrifice for Avonex; I had weaned my sixth month old son. The Avonex needle was long, the procedure confusing. After each weekly injection, I ached all over for days. Everyone said it would get easier. I never did get used to the needle, or the muscle aches, or the joint aches, or the flu-like symptoms. Only my boobs bounced back.

Avonex and I only lasted nine months. Not my fault. I injected faithfully. Avonex didn’t hold up his end of the bargain. I had another MS attack. After all my patience, through all my pain, Avonex had done nothing to fend off MS. As soon as I got back from the hospital stay, I called it quits with Avonex. I was tired of being his pin-cushion. Cutting my ties with Avonex meant cutting off the entire Interferon family. I wouldn’t give his cousin, Betaseron, so much as a glance. Was it a clean break? No. Avonex was clingy. It took months—no—years, before I stopped feeling lingering joint pain from you-know-who. Since then, I’ve met only one girl who claimed Avonex was treating her right. I wished her good luck. Avonex just wasn’t my type.

After Avonex, I went on a series of blind dates down in New Haven in a clinical trial for rock star Tysabri. I wasn’t allowed to know if I was with the real Tysabri, or his placebo twin brother. As the lack-luster months went by, I began to suspect I wasn’t involved with the rock star I was hearing so many great things about. I sure wasn’t dancing until three in the morning, or resuming my tight rope routine. I did my due diligence, and kept making trips to New Haven for the sake of science until the study was up.

Once the Tysabri trial was over, I went for wholesome boy-next-door Copaxone. Which was better than nothing. Or so I was told. Copaxone required a shot every day.  The needle was…small. The side effects were…non-existent. Copaxone wasn’t going to hurt me. But did it help me? I couldn’t tell.

I believed in Copaxone. I had hope for our future. I shot up faithfully, day after day after day. I felt sorry for other girls, stuck with fickle meds that gave them nothing but side effects. Over the years, maybe I got too complacent. Maybe I ignored a couple of symptoms I shouldn’t have, like my fingertips going all numb and tingly.

When I relapsed on Copaxone, I did not even know it. I was shocked to learn my brain had developed a black hole. Copaxone let me down gently, which made the betrayal all the more insidious. I had no choice but to call it quits.

After I dumped boy-next-door Copaxone, I wanted to go for Tysabri. The real Tysabri. The rock star. After all those precious months I’d invested with the placebo twin in the Tysabri trial, I felt I deserved the real thing.

Tysabri and I did finally hook up, but it turned out to be a one night stand. The very next day, the Feds found out about Tysabri patients who died in the trials, and the parent company yanked Tysabri off the market. Maybe I was actually lucky to have been matched with that boring old placebo. I later learned we are incompatible.

Tysabri and me were not meant to be.

Looking back, I wonder if I got benefit from any of those early exes. I relapsed on all of them. They were all expensive, with price tags of over 1k/month. Did any of those fancy boys slow down the progress of MS even a little bit? I’ll never know. Perhaps all I got out of those medications was a sense of hope. A false hope can get a girl out of bed in the morning. Which is all very nice, but a false hope can also keep a girl from looking for The One.

When Tysabri dropped out of the picture, I had a nice long cry in the shower. Then I got online to hunt for the next dreamboat. As one does. I was desperate, so I was willing to get a little kinky. The med I chose wasn’t actually being prescribed for people with MS. It was being prescribed for organ transplant recipients. But I figured it worked the way I needed it to; it calmed the immune system. I persuaded a brilliant researcher to prescribe Zenapax off-label. The next three years were our honeymoon years. I would get a monthly blast of Zenapax through IV.  Whoah, baby! I never felt so alive. Like a superwoman. My relapses stopped. My body was fully functional. I knew not to take that gift for granted. I got fit. I got happy.

Then one day, Zenapax went away. The brilliant researcher had taken all the inventory in the United States to use in a study at the NIH (National Institutes of Health.) She changed his name to DAC-HYP, and changed the delivery method to sub-q. I was willing to be flexible. DAC and I had a long distance thing going for years. I would fly in to Baltimore, stay in hotels, meet up at the NIH. DAC continued to protect me from MS progression, but our relationship was not the same. With the sub-q injections, I no longer felt like a superwoman. But I stayed faithful.

When DAC finally got FDA approval, he changed his name again. He went on the market as Zinbryta. I thought  that once other girls with MS got to know him, they would all be changed, like I was. That happy ending was not to be. There were rumors against Zinbryta from the start. Black box warnings. A few people died in Europe. The FDA had him bumped off. I became a widow.

I kind of wanted to stay single for a while. Play the field. I found the field was full of possibilities…that were fairly ineffectual for anyone over the age 50. Nonetheless, no one likes to see an unattached MS patient. I felt a lot of pressure to move on to the next med. My doctor fixed me up with Tecfidera.

Tecfidera made me blush. But not in a good way. My skin would go hot and fierce from head to toe. I blamed myself for my reactions—don’t we all do this, ladies, when we are in a bad relationship? I thought maybe I should remember to take Tylenol. Or maybe eat more fat. Or maybe I should….

When Covid struck, I though maybe I should dump Tecfidera. Maybe I didn’t need any interference in my already complicated immune system.

For the last year, I’ve been practicing Qigong. It’s good medicine. And it doesn’t favor younger women. The only side effects so far have been health and happiness. And here’s the wild part. My husband has gotten into practicing Qigong alongside me every night. We’ve got a threesome going on.

p.s. My thanks and praises for this illustration goes to artist Robyn Singerman, TA for my Artist as Writer class this semester.

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The Greater Good

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.

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People with MS Have An Important Role to Play in The Great Big COVID-19 Experiment.

Knowledge is power. The more we know about COVID-19, the more powerful we will be. This is why we spend eight to twelve hours a day checking our iPhones.. .to possibly learn twenty two seconds worth of relevant information that might SAVE OUR VERY LIVES. Or, at any rate, to learn another snippet about “The Tiger King.”

I thought I’d pass along a bit of relevant information I’ve gleaned , because it concerns my peeps, the folks with MS. Gentle Readers without MS…stay with me. I’ll be passing along a few bits of relevant information for you, too.

I’ve been taking the threat of COVID-19 extra seriously because I’m in that subgroup that’s supposed to be afraid… very afraid: I am one of the Immune Compromised. Like many of the insured with MS, I’ve been taking very expensive medication that I’ve since read may have made me fractionally more immune compromised in the face of COVID-19. Had I been on a more effective MS medication, I may have been significantly more immune compromised. So I guess I’m glad I was on a dud of a medication? Mostly, I feel those of us with MS and medical insurance have been played for suckers to generate profits.

Anyway, I’m off my meds. Good riddance. Except. I am now experiencing weird visual symptoms that may (or may not) have been prevented had I continued with my lame MS drug. There is no way to know if I’m having a relapse without going to a doctor, and who wants to do that? I don’t have a control-group-twin sister who is still on Tecfidera.

Yesterday I read about a tool more ethical than a control-group twin sister— a global initiative that is amassing data to help people with MS and other demyelinating diseases of the central nervous system to make more informed decisions about our risks related to COVID-19. It’s a database called COViMS.

We neuro-compromised don’t have to do much to participate in this database. We just have to a) catch COVID-19, b) get tested (good luck with that!) and c) tell our doctors to use this link to fill out a brief report, though “only after a minimum of 7 days and sufficient time has passed to observe the disease…through resolution of acute illness or death.”

The form takes ten minutes to fill out, but that’s not our problem; that’s our doctor’s problem. We will either be recovered or dead.

I am always looking for a way to be useful after I am dead. (I’m not too keen on being useful during this all-too-brief period before I am dead.) For years, I’ve been wanting my dead body turned into some form of compost. Seriously, that would be a dream come true. But if that dream is not to be, having my COVID-19 struggle recorded in a searchable database will have to do.

There is, however, a small but distinct possibility that my COVID-19 struggle has already come and gone and is only now getting documented in this very small database known as my blog. I was wrapping up a session of qi gong in our back yard during an unseasonably warm and sunny day when I suddenly experienced an acute pain in my lungs. It felt like I’d inhaled asbestos mixed with the smoke from a thousand cigarettes mixed with a thousand tiny daggers. There had been a brief regrettable period in my youth when I was a two and a half pack a day smoker. My lungs felt worse than they did then. And felt worse than they did through my childhood bouts of pneumonia. There was no database to consult about my chances of surviving COVID-19. As far as I knew, being Immune Compromised meant I was about to be a goner.

Operating under this speculation, I did a few embarrassing things.

I received a text from a friend of mine, who was anticipating the arrival of three grown children from New York. She had just discovered the toilet paper shortage was real. I replied by bequeathing her our precious Costco sized trove of toilet paper, without checking in with my husband first.

I then texted my son that I was proud of him. Or that I loved him. Or that he should do good in the world. Something that could have raised an alarm.

I then called my parents. They told me to hang up and call a doctor. So I hung up and tried for a telemedicine consult through my insurance company. In order to qualify for a telemedicine consult, I had to fill out a brief questionnaire about my health status and symptoms. The questionnaire asked if I were immune compromised. I was immediately patched through.

The doctor on the other end of the telemedicine consult was a young woman who looked and sounded ten times sicker than I felt. As she asked me questions, her toddler toddled into the background, asking questions of her invisible patient in her private toddler language. The doctor informed me that I would not qualify for the COVID-19 tests in my area. She advised me to get some rest. She told me that I was breathing more freely than a patient she’d be concerned about. Feel better, she said. Feel better, I said. The toddler said something in her private toddler language. The exchange cheered me up.

I realized that even though I have MS, and had inexplicably burning lungs, that didn’t necessarily mean I had COVID-19. And even if I did have COVID-19, it was not necessarily inevitable that I was about to die. Maybe there was a chance I could live through COVID-19. At the time, there was no database to consult. Instead, I grated ginger into my tea and I rubbed tea tree oil onto my chest and I did a round of qi gong with Jeff Chand on You Tube and I consulted with my body and my breath. Within a few hours, I was updating my parents that my lungs had stopped hurting so badly. I received a text that my friend would not be needing my toilet paper, after all. I received no reply whatsoever to my text to my son; clearly, I had not freaked him out.

I went to bed with my lungs aching, but not too badly. I woke up barely feeling my lungs at all. In the two weeks since then, I’ve had one other inexplicable scare wherein my lungs hurt severely for a few hours, but mostly, my lungs have been serving me quite well. How well? A few of my college friends talked me into trying Wim Hof’s guided breath meditation on YouTube. I learned I can hold my breath for two minutes, a super-power I would have loved to have known I was capable of back in 1972 or so, when I was watching a Batman and Robin episode in which the daring duo was trapped in a room with rising water. There isn’t much we can control during this COVID-19 crisis; controlling the breath has become ever more appealing.

My friend Monica also has MS and has also had a COVID-19 scare, although we didn’t know it at the time. She announced her symptoms as we sat in a sun-drenched lobby that looked like it belonged to an upscale hotel and not a Neuroscience Center. We’d all just finished what I announced would be my final MS yoga class for the nonce…I was at that point feeling a bit apologetic about my freakish instance that COVID-19 could be on its way. Our friend Kim was sipping the kale and blueberry smoothie we’d recommended. Monica had abstained from ordering a smoothie; she explained she was recovering from battling a freakish bought of diarrhea, and was still experiencing the strangest side effect—she seemed to have lost her sense of smell. None of us yet knew these were symptoms of COVID-19. I would miss only one MS yoga class before the hospital finally cancelled its sessions. Since then, I’ve been hosting the MS yoga sessions on Zoom.

At the end of the first Zoom yoga session, Monica and I were the last two participants left on the screen. She told me she was looking forward to the COVID-19 antibody test. Wouldn’t it be cool if we’d already had the virus, and could just relax? I countered that since COVID-19 was a novel virus, we had yet to learn how effective antibodies would be, and for how long. Today on NPR I learned that those antibody tests we’ve been looking forward to do are actually riddled with false positives. It’s still too early to relax.

Even so, the unique challenge we all face is that we have to relax…at least enough to keep ourselves from developing a harmful immune response should we encounter COVID-19. And we have to stay vigilant. At least enough to keep the virus from getting to us in the first place. It’s a tricky balancing act. Those of us with autoimmune disease are uniquely positioned to have already experienced the loss of control the rest of you are now experiencing. It’s not easy to be calm in the face of imminent danger. But it is imperative. The immune component of the disease opens up an opportunity for all of us to take back some control of our health by treating ourselves well.

Gentle Reader, what have you been doing to relax?

Intermission: In Anticipation of All the Pee in China, part 2

I’ve done the worst thing a blogger could possibly do: I have posted a part 1 of a story, and then neglected to post a part 2. 

I’ve had not one good excuse—but a string of good excuses: I’ve had a UTI, then another UTI, then another UTI. (Or maybe the same UTI?) This string of UTIs led to a string of antibiotics. Which led to c-diff. Which led to the bathroom. Just as I was delayed in writing Part One of All the Pee in China because I had to run off to do Number One all the time—I have been delayed in writing Part Two because I’ve had to run off to do Number Two. 

I’m used to going to work sick (I’m always sick—I have MS) but I’ve had to cancel all my workshops. I’ve had to skip my yoga classes, and my tai chi. I’ve had to step away from my public identity. This morning I got up and put on my wellness drag: I darkened my brows, lightened the circles under my eyes, applied moisturizer to skin that is dry. My body isn’t buying it. I had twenty-four hours without a fever, but I am still not well. I need to rest. 

Gentle Reader, we will have to wait a while longer for part 2. No doing is the best thing I can do. 

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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Teetering on the Edge of TRAP-MS

On my most recent trip to the NIH, I was hoping maybe I would be disqualified for the TRAP-MS study, which evaluates four existing FDA-approved medications for their potential to reverse progression in multiple sclerosis.  I don’t like that I have disease progression, and therefore qualify for the study. But if I am someone whose MS is progressing, I like the option of being first in line to take an FDA-approved medication that might help.

This was my second six month check-in to establish a baseline on my status with my new MS drug, Tecfidera.

Before I flew out, Dr. W, my NIH doctor, told me there was a  chance I’d test out of the trial, since I didn’t have much progression to medicate.  I wasn’t as optimistic about my lack of MS progression. My fall this January didn’t just fracture five bones in my face—it fractured all the routines I’d set up to live as healthily as I could with MS. I’d only just started going back to the gym. I hadn’t yet returned, wholeheartedly, to the Wahl’s-ish diet I’d been following.

During my summer exam, Dr. W had clucked at my balance— “your balance is shit”—and the lack of resistance in my right leg:—“so weak.” What would my balance be like after two months of not daring to challenge it? What would my strength be like after two months of barely any dog walks and zero visits to the gym? Thankfully, this setback didn’t prompt an MS relapse. But if there was going to be a time when my MS might be progressing, it would be now.

I’d been instructed to “take it easy” before my clinic visit. But that morning, I had pushed myself to the verge of immobility.

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As I entered Building 10, my spirits rose.  Maybe it was the profusion of plants, or maybe the profusion of people. I noted there was new art on the wall.

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I noted there was still no additional entry in the display of Presidential Visits.

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Luckily, the first appointment on my schedule was at Phlebotomy, which involved sitting, first in the waiting room, and then for the needle. That gave me some time to recover from all the walking I’d done through the airports, the Metro, and the NIH campus.

When my number was called, I got the same needle master as I’d drawn on my visit the previous summer. I recognized the fan letter he’d posted about his ability to make a two year old smile while drawing his blood.

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The testimonial hangs strategically at eye level of the person waiting to get their blood drawn. It is terribly effective at arresting any impulse to cower or cringe. Nobody wants to come off as a bigger baby than a sick two year old.

Did I, like the sick two year old, leave smiling after having my blood drawn? I doubt it. I’ve not been known to smile until after I’ve had my second breakfast.  I soon discovered that my favorite cafeteria—on the second floor in the new building—was closed for remodeling. I found my way to the alternate cafeteria in the basement of the old building. I loaded up on greens and root veggies and proteins. The meal provided all the rejuvenation I needed. By the time I stepped off the elevator on the fifth floor and rounded into the clinic, I no longer had a limp.  Seeing Diane, a nurse I’ve known since my first NIH visit, put me in the mood to smile.

Since returning to real life after my big fall, I’ve become accustomed to being greeted with “Your face looks good!” If I chose to take “looks good” as meaning anything more than “not permanently damaged,” it is because I latch shamelessly onto the positive.

Diane obviously didn’t get the memo about the five facial fractures. Instead of saying, “Your face looks good!” she greeted me with a hug and a frank assessment. “We’re getting old!”

True enough! I, for one, don’t mind looking (or getting) old. I’ve earned my silver stripes. Besides, those strands provide an instant, socially acceptable explanation for a slow or unsteady gait. It’s not that I am MS closeted—it’s just that not every distressed person stuck behind me on the staircase really wants or needs an explanation of the ravages of autoimmune disease when an assumption about the ravages of age will do.

Diane didn’t look any older, and I told her so. Diane is remarkably stable. She just doesn’t change. Case in point: the day I met her, she had just won a prize in a weight-loss competition between nurses on her floor. Here’s the catch: Diane had won by losing a mere pound and a half.  If Diane has had any weight fluctuations since then, they have probably been within the same range. Diane has had the same haircut as long as I’ve known her: same bangs, same color, same length. Diane stays Diane. I wouldn’t want her any other way.

Jen, the other dear nurse I’ve bonded with from the start—swooped in to agree with Diane’s assessment, “We are getting old!” as she grazed my cheek with a kiss. Jen’s hair was red that afternoon—her hair is a new color, a new style, every time I see her. Jen tends to pretend she’s disorganized or absentminded or late. True to form, she crafted an overly-elaborate explanation for why she couldn’t linger as she dashed off down the hall on her sturdy Doc Martens.

Diane wondered aloud, “How long have you been coming here, anyway?”

I guessed, “Maybe nine or ten years.”

Diane pulled up my file.  “Since 2010. Nine years.”

When I’d first come to the NIH, I’d been chasing daclizumab, the only drug that had managed to stop my MS relapses.  After the NIH had requisitioned all the supplies of it, I was more than grateful that there was room in the trial of the drug for me. For the three years of that trial, Diane and Jen had taken my weight and my blood every month. Once that trial was over, I was permitted to continue to take daclizumab though the NIH “safety study” while we all waited for the FDA approval. I flew in every six months for monitoring and new drug supplies. Once the drug was approved, we took what may yet be a final group photo.

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Thanks to TRAP-MS, we were back together again.

While Diane was at her computer, she got a notification on my labs. She scrolled down two screens of data.  “Your labs look good.”

I thanked her, and told her how, the last time I’d visited, I gotten my lab results on my phone just as I was about to get on my departing flight. The cholesterol was marked in red, and looked way high. I was freaking out that the diet I was on was going to give me a heart attack. Doctor Google hadn’t been much help.

“Stay away from Doctor Google. You should call us when you have a question.”

Diane scrolled up, “Your good cholesterol is what’s really high.”

Then Linh, one of the graduate students, stuck her head in the office. She was ready to give me my tests.

We started with the timed 25 foot walk. Considering I had been limping just an hour or so earlier, I wasn’t optimistic about the outcome. Still, I’ve been conditioned to give these tests my all, so when it was time to march from one masking tape line to the other, I barreled along the hall like I was on my way to lift a screaming baby out of a vat of boiling water. Then I turned around and barreled right back. My fear of falling paled in comparison to my fear of failing. I did not fall.

I announced, “My healthy appearance is a flimsy veneer.” Like the NIH don’t know that. Test by test, I went all out, competing with my better-rested summer self.

As Dr. W. examined me, she seemed gentler than last time. She didn’t push as hard for the resistance tests. She didn’t chide me for being weak. When I messed up on the heel-to-toe test, she let me re-take it. Twice. Not that I did any better.

Overall, Dr. W was enthusiastic about my condition. She told me maybe the rest I’d had was doing me some good. Or maybe the Tecfidera.

When Dr. W. called a few days later with the results of my visit, she assured me the MRI looked stable. She told me I’d actually performed better on some tests, like the peg test, than I ever have. But overall, my numbers still nudged a bit in the direction of progression. As long as there is a progression of my disease, I will continue to qualify for the study,

Dr. W wished me luck in getting disqualified from the study when she sees me next time in six months. As much as I love this crew, I would love to be too healthy to see them.

Life Isn’t Fair

I am currently enrolled in the TRAP-MS trial, which tests four FDA approved medications as potential supplemental medications for people with Multiple Sclerosis (MS). My appointment was originally scheduled for January 3, but as it turned out, I’d had to delay this follow-up twice—once because of a nasty cold, and once because of a nasty fall.

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At 5:35 on the morning of my twice delayed visit, I rounded a curve on I-75 South and was greeted by a dense array of taillights. Oops. I hadn’t planned on a traffic jam so early in the morning. There was no way I was going to make it to the airport within the recommended sixty minute buffer before my seven am flight. I was mortified. Would the NIH have to cancel yet another flight? I’d heard the NIH doesn’t get charged for flight cancellations. I stayed in my lane and hoped for the best. After a tense twenty minutes, the traffic jam dispersed, and traffic returned to normal. I made it to long term parking at ten after six. I still had to take the van to the airport. When I approached the kiosk, I had little expectation that it would produce a boarding pass. On a previous trip, I’d been denied a boarding pass for being a mere two minutes late.  Just for the heck of it, I entered my confirmation code and—surprise—received my boarding pass. I joined the line to security. The line was not a line. It was a serpentine labyrinth the likes of which one usually encounters on the holidays, not on an early morning weekday. Lines are not my thing. I know they aren’t anyone’s thing, but since multiple sclerosis, my legs tend to get super tingly and ornery if I stand too long. This line, however, moved just enough so I wasn’t standing, just walking very very slowly. My legs have become all too fond of walking very very slowly, so they didn’t tingle overmuch. They didn’t collapse. They cooperated. For that I was grateful. A modicum of gratitude can work wonders on the body. Security went smoothly—I wasn’t asked to take off my sneakers. I chose to walk to Concourse B instead of waiting for the tram, and as it turned out, my unruly legs got me to the Concourse B escalator maybe 30 seconds before the tram. At that point, even a 30 second increment counted. I was the last passenger to board the plane. By far. My seat, 5B, had leg room to spare. Not only that, I was the only passenger on this flight with no seat mate. While I was by far the most delinquent passenger, I’d wound up with the best accommodations.

Life isn’t fair.

IMG_1354We made it to our destination early. I wouldn’t have to wait for the 10:30 van to the NIH. I could easily make the 8:30.

IMG_1353I consulted my email from the travel office, which instructed me to wait on level three between doors 5 and 6—on the far end of the airport. As I hustled in that direction, a uniformed agent asked me for my destination. When I said, “The NIH,” he directed me to wait between doors 3 and 4. I hesitated. Which to believe? The travel office or the guy on the ground? We locked eyes for a second. I figured that if I picked the NIH instructions over his word, I couldn’t come to him for help later. I showed him the instructions on my screen. He muttered, “Then do as it says.”

There was no one waiting between doors 5 and 6. I figured, if I’ve chosen wrong, I’ll at least be able to spot the familiar white van with the NIH logo as it passes—and possibly manage to flag it down. 8:30 came and went. I reminded myself that traffic in DC was even less reliable than traffic in Cincinnati—who was I to get ruffled if the van was late? A professional looking man—perhaps a doctor?— approached timidly—perhaps wondering if this was where one waits for the NIH shuttle. And then he scurried away, with an air of private mortification. That was the only time I took my eyes off the road. Was it then that the NIH shuttle went by? Or had the shuttle indeed been late? At 8:42 I called the travel office, just to check. They told me the shuttle had arrived on time between gates 3 and 4. They were unimpressed by my complaint that I’d been instructed to wait between gates 5 and 6. I still had the option of the 10:30 shuttle.

At this point I could go back inside the warm airport, get off my feet, and maybe write an entry for my long neglected Ms. Lab Rat blog. On the other side of the road, the metallic Metro streaked by. The NIH van had let me down once already. I chose to give the Metro a try.

The NIH has its own Metro stop. In the past, I’ve used it to optimize my visits, dashing off to a museum, or the zoo, if given a wide enough stretch in my schedule between a clinic visit and an MRI. I’d never had the occasion to take the Metro from the airport, because in the past, there had always been a cab waiting for me. This was my first visit since the research got shuffled to a different department within the NIH, and this department was stingy. It wasn’t paying for cab rides, or food stipends, or hotels, and probably wouldn’t reimburse my measly little Metro fare.

I didn’t care. Taking the Metro seemed a better proposition than loitering in the airport. I found my way to the station where a Chinese gentleman guessed I was in search of the map. I thought of my son, an American who lives in Beijing and has probably been assisted once or twice at train stations by helpful Chinese gentlemen. I saw that my commute would take only 44 minutes and would involve only one transfer, which confirmed my hunch that I’d made the right decision.

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I loved the ride on the DC Metro, loved the long Deco-like escalator that opened up to the regal white stone NIH station.

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I was in too good a mood when the NIH security guard handed me my temporary ID and asked, “Do you know where you are going? Do you know how to get there?”

I answered, “Yes.”

I should have asked, “Where do I wait for the shuttle?”

I had many memories of walking from Building 10 to the Metro stop. But on this day, I would build a new memory. A memory of getting about halfway to Building 10 when I started to limp. A memory of waving urgently at the campus shuttle, which drove on by.

Life isn’t fair.

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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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I Am Creating Change By…

Endorse Me! 

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

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

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

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