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.

As I entered Building 10, my spirits rose.  Maybe it was the profusion of plants, or maybe the profusion of people. IMG_1374I noted there was new art on the wall.

IMG_1379

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

IMG_1380Luckily, 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.

IMG_1337 2The 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.

IMG_4207Thanks 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.

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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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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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The Yoga Groove

welcome

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

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

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

IMG_9420

foot drop

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

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

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

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

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We Interrupt this Narrative

I’ve been meaning to construct a nice, orderly narrative of my most recent visit to the NIH, one that didn’t jump around in time too much, but I’m going to interrupt this account at the point right before I meet my phlebotomist—Who wouldn’t want to delay getting pricked?—by announcing I have just now learned I have a new diagnosis—severe osteoporosis. Which I never would have tested for had I not joined this latest NIH study, which recommended a dexa scan.

I can’t afford to get too worked up about this. I’ve got an hour until I leave for my first day of teaching Artist as Reader. I know half my students from previous classes, and they give me great hope for the future. We are going to make art in response to the screenplay of Get Out, my current favorite move, The Sympathizer, my current favorite novel, and Don’t Call Us Dead, my current favorite poetry collection.

Don’t call Ms. Lab Rat dead. Osteoporosis is just another bump in an admittedly bumpy road. If I hadn’t been ordered to take a bone scan, I certainly wouldn’t have. And I wouldn’t have learned a kind of important new feature of my ever changing body. 

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Breakfast Break: MS Style (part 4 of Ms. Lab Rat’s Latest NIH Adventure)

When we last left off, I, Ms. Lab Rat, was sniffing the sickly scent of powdered sugar as I passed the by-now stale gingerbread houses on display in the secular cathedral that is the NIH (National Institutes of Health.) I had time to kill before my Phlebotomy appointment, so I took the elevator to the second floor cafeteria, which has an excellent salad bar. And discovered I was too early for salad.

Here’s the deal with my new Wahls-inspired MS diet: the foods I used to associate with breakfast are off the menu. No processed foods, no gluten, no grains, no milk (bye bye breakfast cereals,) no eggs, no cheese (bye bye omelets.)

Here is a picture of what breakfast looked like for me today: IMG_9271

You’re looking at bok choy and garlic escargot simmered in homemade chicken broth, topped with kimchi and dulce. The Wahls Diet calls for the consumption of four servings of leafy green veggies a day, at least four servings of colorful fruits and veggies, a meat, a touch of seaweed, a bit of something pickled. The Wahls Diet is also very very big on homemade bone broth. So this breakfast covers pretty much all the bases. (If I were a true purest, there would have been a little knob of organ meat floating around in the bowl, too. But that’s the thing about the Wahls diet. Or maybe any diet? You can always feel you’re not quite up to par.) This breakfast was yummy, by the way. But this kind of breakfast is not easily obtained on the road. Not even in a hospital. (By the way, what’s up with hospital food? Why are there so many unhealthy choices? Topic for another blog.)

Here’s a fuller, indeed cluttered picture of what breakfast looked like for me today, when I tell the whole complicated story of my MS maintenance:

IMG_9272

You are still looking at my pretty bowl of healthier-than-thou breakfast food. You are also looking at the supplements required for the clinical trial of the Wahls Diet:

5,000 IU Vitamin D3, 1 t cod liver oil, 5000 liquid vitamin B12, 1 mg folate, multi-vitamin.

Then there’s all the stuff I have to take for my funny bladder:

AZO, macrobid, and some other antibiotic I’ll be finished with at dinner.

Then all the stuff I choose to take for my self-designed Ms Lab Rat trial:

3x 100 mg Biotin (which I am hoping will eventually fix my bladder problems and get rid of three of the items above), 500 mg Hemp oil, local hemp oil, glorious hemp oil (which has helped me sleep and dream after many sleepscarce, dreamless years), 5 mg Lithium (which I thought was doing a fine job as a mood stabilizer, though I just learned that what I take isn’t anything like a mood stabilizing dose. So let’s call it my placebo.)

This is a lot to keep track of. When I graduated from the Swank Vs. Wahls clinical trial, I got a certificate (no joke) and a private viewing of a 20 minute video of Dr. Wahls that just served to delay the seven hour drive ahead of me. No t-shirt. The only remotely useful thing I left with was a booklet to help me keep up with all the details of living in a Wahls Diet world. (I had rallied hard for an app, but there isn’t one. Yet.)  For a few weeks afterward, I kept filling in little circles every time I popped another supplement, or finished another serving of leafy greens. But eventually I ditched the booklet. I want to feel a little less obsessive, a little less persnickety. Either that, or I’d already assimilated all the expectations. My brain had become the diet app I’d been asking for.

The morning of my TRAP trial, I realized I was not going to get a Wahls breakfast, or Wahls-ish breakfast before my blood draw. I guzzled a “green” drink I purchased from a vending machine and took the elevator down to Phlebotomy. A lovely woman handed me a white stub with a number. As I glanced down to read 32, she called, “Thirty two.” It was the Christmas holiday. I was the only patient in the waiting room. I filed past untouched trays of cookies and two pots of coffee and entered the orderly hive of numbered white cubicles, wondering if I’d recognize my phlebotomist. I had been there many times before.

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TRAP (part 2 of Ms. Lab Rat’s Latest NIH adventure)

The vast lobby of Building 10 of the NIH was nearly vacant of the usual international mix of medical professionals and imperiled pilgrims, yet it felt cluttered. This majestic bastion of scientific research had been stuffed with numbered tables bearing garish gingerbread houses, presumably made by the in-patients and staff. It looked like a pop-up church raffle. I glanced past the hapless man marooned at the Welcome Desk and noted that the coffee shop was now barricaded by scaffolding. The scent of coffee had been replaced with insidious notes of powdered white sugar. I wondered if perhaps my system of always accepting the first appointment of a given span of available dates would finally let me down. We were three days out from Christmas. The speculation on the van was that the leading physicians would still be on vacation. I didn’t buy into that. I expected to see leading physicians. Then again, I’d also expected coffee.

I ducked into the area on my right to fill out the paperwork for meal reimbursements. Over the years, the reimbursement office has retained the right to perpetuate various iterations of needlessly awkward exchanges. The first few years I’d gone there, the cashier’s desk was an inch or two too deep for the cashier to actually reach the exchange window to grasp a lab rat’s ID or to pass a lab rat some cash. It added a bit of tension, a bit of comedy, to every exchange. After a few years of these capers, the cashier figured out she could use a pincer device to bridge the troublesome gap. Her victory was short lived. By my next visit, the entire office was moved. By the visit after, the “short-armed” cashier was gone.

The tradition of inventive obstructions was still in full force, I noticed. There was a sign in front of the office that receives reimbursement forms which instructed all form fillers to stand at a certain distance in front of the glass door, and further warned that those who did not stand would not be seen. In other words, Wheelchair Users, Begone.

Furthermore, the very layout of the office was designed to prevent eye contact, even with compliantly standing non-wheelchair users. The L-shaped desk for the sole employee in the office was set back and to the side of the glass door. The computer was placed along a wall at a ninety degree angle from the door, so that the occupant of the office effectively had her back to the door every time she looked at her computer. Once again, the office had been created to make it structurally impossible for the employee to do her job effectively.

I wish I could say this office is an anomaly in the NIH. It is not. There are doors in the MS clinic without wheelchair accommodation. If that’s the NIH plan to stop MS progression…it isn’t working yet.

The only other pilgrim there was a man sprawled out on a chair. Had he been conscious, I would have asked him if he needed me to signal to the functionary behind the glass door. Instead, I waited for the functionary to complete her personal phone call, then check her computer screen, then finally swivel somewhat to notice me standing the appropriate distance from the glass door, like a good wheelchair-free pilgrim.

She waved me in.

I used to feel unworthy of meal reimbursements. But that was before the drug the NIH tested on me came out on the market, and my monthly deliveries came with an invoice of seven thousand four hundred and something dollars per month.

I handed in my clipboard, feeling entitled to every last penny, darn it, and headed for my appointment at Phlebotomy.

The acronym for this new study? TRAP.

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