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All the Pee in China, part 1

I haven’t written any blog posts for a really long time. I’ve had a good excuse. I had to pee.

I mean it. I’ve really had to pee. Multiple sclerosis causes my bladder to be both overactive—so much so that I rarely go ninety minutes without rushing to the bathroom—and under-active—so much so I have to use a catheter to completely empty.

Unrelenting runs to the bathroom have been not so good for my sleep patterns, not so good for my clarity of thought, and not so good for my travel plans. But that didn’t stop me from making travel plans. My son lives and works with his girlfriend, MC, on the other side of the planet. When this adorable couple invited my husband and me to stay with them in Beijing, there was no way we wouldn’t go. I love my son more than all the pee in China.

In the weeks leading up to the trip, every time I announced, “I’m going to China,” I’d feel mildly surprised I wasn’t asked, “How the hell will you manage that?”

Twenty five years of living with MS has made me pretty good at bluffing good health, but even I can’t bluff my way through frequent bathroom runs.

Hadn’t my friends noticed I rarely can get through a whole movie without excusing myself to run to the bathroom? Hadn’t my workshop students noticed me having to take bathroom breaks in the middle of ninety-minute sessions?

My anxiety about my bladder permeated all of my travel preparations. When I switched my language of choice on my Duolingo app from Spanish to Chinese, the first word to pop up on the app consisted two figures: the figure on the left looked to me like a distressed lady crossing her legs because she has to pee, obviously—whereas the  figure on the right had its arms outstretched, blocking the distressed lady’s way. Yes, I have the magical power of turning a language app into an ink blot test.

The distressing ideogram was paired with a sound. My American ears heard the word: “how.”

How, indeed.

I wondered how I was ever going to travel through China—not to mention to China—when I always have to pee?

The flight to China would be an overnighter. On ordinary nights, I get up four to six times to pee. I kept picturing myself seated in the middle of a long row, squeezing past passenger after passenger after passenger, disturbing their sleep—“Excuse me, Excuse me, Excuse me”—every 90 minutes.

And that’s what I could expect if conditions were optimal. 

The sad truth is, I’ve been getting UTIs on a monthly, sometimes bi-monthly basis. For those of you who have never had a UTI: congratulations. UTI stand for urinary tract infection, or Unrelenting Torturing Incontinence. To add agony to the inconvenience, every time you pee with a UTI,  it stings.

Chances of my getting a UTI during a two week trip? Between 50-100%.

Air travel with a UTI? Been there. Agony.

And even if I did make it through the overnight flight, how exactly would I make it through China? Our son wanted us to explore a few cities while we were there.

What would the public restrooms be like in China?

Our son warned us most public restrooms featured squat toilets. He advised us to practice squatting. I practiced. Our son mentioned most facilities were BYOTP—Bring Your Own Toilet Paper.

My husband had to talk me out of packing a roll.

I called my capable mother to air my anxieties. She has answers for everything. Worried about a UTI? Get antibiotics. Worried about having to pee? Get diapers. “They make diapers differently now,” she said. “More comfortable.” More comfortable than the ones she’d pinned on me in 1967? And possibly—ahem—larger?

Gentle reader, I got myself the antibiotics. When I ran out of time to procrastinate further, I drove out of town—out of state—to buy myself adult diapers. For double protection, I picked out overnight pads as well. I reminded myself that astronauts wore diapers. Who looks down on an astronaut? Nobody. Diapers could be seen as elite-wear for the long distance traveler. As I approached the check-out counter, I noticed I was the only customer. The cashier had no one to focus on but me, and those diapers, and those pads. My astronaut justification started to wobble. Wasn’t there some crazy astronaut lady who wore an adult diaper on a cross country drive to avenge a love spurned? Everybody looked down on that astronaut.  I silently reminded myself that I had a longer trip ahead of me, and a better motive: a mother’s love.

As I set the items on the belt, I forced myself to make eye contact as I returned the cashier’s greeting. I hoped the cashier didn’t see a middle aged nervous wreck with MS buying diapers and overnight pads for herself, but rather a high strung, healthy woman performing the duties of middle age—buying pads for herself and diapers for her fragile old mother—a fiction that could only hold with a cashier who has never met my mother, who is generally the most robust woman in any room. The cashier conveyed absolutely zero shock or pity, enabling me to maintain my dignity. So I got through that purchase. How would I get through China?

I’ll tell you. China was nothing like I thought it would be.  Let’s start with the meaning of that first character that popped up on my Duolingo app, the character that sounded like the English word H-O-W. It happened I would meet a friendly native speaker at a Beijing art gallery who would tell me the actual meaning of the word “Hāo.” As you may have guessed, the word has nothing to do with a distressed lady being blocked from accessing the bathroom by an obstinate man with outstretched arms. Hāo, she assured me, means “good.” Hão was also a part of her name.

Was my ink-blot interpretation of the figures in that ideogram something other than an instance of preternatural second sight?

Not so fast. Gentle readers, on my journey I would indeed meet an obstinate man who would physically block my way to the bathroom when I was in acute distress and had to pee. But I wouldn’t meet this imposing figure in China. I would meet him in the Toronto Airport.

  • to be continued

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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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An App for That?

This wide and wonderful planet is not as handicapped accessible as it could be. Which leads to all sorts of conundrums for travelers who are in wheelchairs, or on crutches, or who just have to pee—now.

Is there an app for locating free, clean, accessible bathrooms? I want one. Until that day, I will simply follow the Golden Arches.  Gas station restrooms can be dicey. Highway rest areas are, in my mind, the pinnacle of civilization, but are prone to closure during state budget cuts. Which bring me back to McDonald’s. Again, and again, and again. Specials shout outs to the McDonald’s by the Arc de Triomphe and the McDonald’s in Waimea. Home is where they have to let you in.

I have another request of the App Gods. I want an interactive, updatable app to alert travelers with disabilities of situations like this:

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I was shocked, as was the lady in the photo above, to see that the elevator was out at the Metro Station at the NIH (National Institutes of Health), of all places. We’d been lulled into the feeling that we’d reached Oz and all of our problems were about to be solved. And now this. While believe I pointed the young woman in the direction of a working elevator, that could have been wishful thinking. The sun had just burst out from under a cloud, raising my body temperature, frying my neurological wires. So I was distracted. I had to pee. But in my distraction, I did wonder: why couldn’t Google Maps have a little alert that the elevator was out, saving this lady the effort it took to get here…and a little flag indicating the location of the next closest elevator? And that’s when my app idea was conceived. It’s still not fully formed.

Is this app a layer on existing apps that a disabled user can opt into?

Or is this a separate app? I know I love to read blogs about other people’s (mis)adventures traveling with MS, like the Xanax tinged travails of MSGracefulNot.   Wouldn’t it be nice if all the testimonials were in one place? That’s what the fine blog The MS Wire has attempted to do. Ed Tobias has compiled travel tips from his years of adventures, and has invited his readers to do the same. He’s started with some practical tips about traveling New York, with the hope of adding more cities in the future. It would be great to have folks check in from Ontario and Topeka or their own home town, with their praises of well tended sidewalks and/or their condemnations of doors within hospitals that can’t be opened without buttons. (Major pet peeve!) It would be great, on entering a new city, to have the dirt on the dirty bathrooms (I know, I know, I’m obsessed with bathrooms) and broken elevators from people who get it. It would be great to have travel anxieties dispelled by the knowledge that our peers have our backs.

Thank you for reading!

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