When to Disclose/When to Retreat

Here I am, last summer in Beijing, the white person facing the wrong direction while everyone else is doing tai chi .

Twenty five years after receiving a diagnosis of multiple sclerosis, I am lucky to still have the option to decide whether or not to reveal my condition to a new person or group. I’m not MS closeted, but I do like to wait until I’ve already formed an impression before I am designated/dismissed as “disabled.”  I’d rather expand peoples’ conceptions about MS than contract their conception of me.

I wasn’t sure if, or when, I would share that I have MS with the tai chi class I’ve just joined at the local rec center. The first session, I’d flowed along with everyone else and hoped I would have energy remaining for teaching my  class with college freshmen in the afternoon. Once I verified I could perform both activities in one day, I thought I’d be ready to add this new tai chi class to my schedule.   

When I went back for my second session, I stood with the other students and watched our instructor demonstrate the complete series of sweeping, balletic motions we would all be working towards. Most of the series looked like it might eventually become achievable for me. But not the kicks. 

We’d just spent the past hour meditating on our feet, then doing repetitions of the first three moves of the complex series. I’d been feeling like a badass for merely staying upright all that time. The instructor singled me out, as the newcomer, informing me I would one day be able to execute all the same moves he had just performed. 

As much as I don’t want to get in the way of reaching my full potential, I couldn’t see that my future would ever include a series of high kicks. I’d been feeling it would be enough for me to eventually execute the complete series while making smaller movements that merely approximated kicks.  

It was time to dial down the instructor’s expectations. 

So I made the call. I disclosed to the group that I have MS. 

The woman who’d been practicing beside me was baffled. She told me she’d worked with a lot of people with MS, and I don’t look like any of them. She said, I guess you know all about the latest drug.

A few years ago, I would have rattled off the good news about the latest drug, the one that had stopped my very aggressive case of MS. I would have told her how I’ve been commuting for years to the National Institutes of Health (NIH) for my doses while waiting for the FDA approval to release untold thousands of MS patients from the shackles of disease progression. Life sure didn’t turn out that way. 

I said, “There is always a latest drug. I’m here because I’m interested in the oldest treatments.” Since she was clearly a regular, I asked her how one pays for the class; she told me I could work it out the following week. We both assumed I’d be back. 

That was a week and a half ago. Since then…my son texted. His text put a check my lifestyle. 

Everyone who knows me knows I love my son. I love him more than all the pee in China. I have traveled to the other side of the planet for my son. At his request, I am now going to hunker down. 

The other day, he texted from Indonesia to remind my husband and I about the dangers of Covid-19. “There is a two-week plus lead time, so it might be wise to start hunkering down before there are any tri-state cases.”

Now, this young man happens to be living in the future. Literally. The sun rises for him 13 hours before it rises for us. He has spent the last year and half as a consultant based in China. When we visited, my husband and I saw for ourselves that China is ahead of the US in many ways, some positive—China has way more efficient mass transportation—and some negative—China has way worse air and water quality. Sadly for China, they’ve been way ahead of us with Covid-19. 

Which ought to mean, we have been given an opportunity to prepare. 

My son and his girlfriend MC managed to get out of Beijing in late January, while there was still time Thankfully, Thailand accepted them. They’ve been on the run from Covid-19 ever since. 

As an, ahem, older person with multiple chronic illnesses, it makes sense for me to take Covid-19 seriously, and to cut out all unnecessary exposures. My schedule is jam packed with transcendent, meaningful, one might say, necessary, exposures—which start to look foolhardy when viewed through the lens of Covid-19, 

Yesterday I cut out what is probably my most dangerous exposure—my weekly workshop with the over-70 set at a senior living center, who are feeling as vulnerable to this virus as passengers on a stranded luxury cruise.

I found this homage to Titanic at a train station in Nanjing.

I will miss these writers badly, but the sad truth is, our workshop was already flagging. In the five years since the workshop began, ten of the writers have died. Seven are currently out of commission with health problems, and yes, one of those seven has a very bad cough. The two writers who’d shown up for workshop yesterday didn’t blame me for getting out. I love so very many people in that complex. I hope they will be spared. 

Four of these writers have died since this picture was taken.

It was a no-brainer to decide to cut out the yoga class and the tai chi classes I’ve been taking at the local hospital…which may be the second most likely location for me to catch Covid-19. It was an easy call to suspend my gym membership. And as much as I love my yoga class at my neighborhood studio, I’d made a promise to my son. The new tai chi class will of course be the easiest unnecessary activity to cut from my schedule. Maybe some day I’ll be back. Maybe some day I’ll be doing those high kicks. It would be a shame to have fessed to a whole new community about my MS for nothing. 

I am not even considering cutting out my class at the art college. Those students are too young to catch Covid-19. Right? I counted seven students coughing yesterday. For once, I’d hoped they’d been smoking cigarettes or sucking down bong hits. 

Today, I have a fever. A mild one. 

Which caused me to call off the usual weekly writer’s workshop at my house. I can’t tell you how many workshops I’ve held while staving off a fever.

But things are different now. 

Be well!

7 thoughts on “When to Disclose/When to Retreat

  1. Great writing, in this case comes from a life fully lived. Very wise decisions accompany you having lived a full and open life. Statistics will clarify young folks get ill … as well as some are asymptomatic and as a age cohort very rarely become critical care patients. That does not in any way reduce their ability to share the virus.

  2. This seems like a wise decision on your part. I understand your son’s fears less, though.

    I’s an interesting thing — we have a coronavirus expert here who’s turning into a widely-quoted coronavirus expert; he’s an old guy, he’s going to work. My dad’s an old medically fragile engineer who’s worked with Tony Fauci and he’s shrugging right now about all this; I don’t know any scientists who are freaking out. In fact just yesterday a chemist and I were talking about not understanding how freaked out we’re supposed to be, because on the one hand this is a “killer virus” and yet for most people it’s a big meh. I mean I had H1N1 before the vaccine and it was nothing to kid around about, laid me out for nearly a month and left some damage behind. If this is like that, though, I’m not hearing about it — I hear that it’s taking down ill people, who are mostly the old people who would’ve been susceptible to pneumonia. We hear at this point a fatality rate of 0.5-2%, which is a blind guess, because we have no idea which cases are being reported and which aren’t. This virus also appears to be uncontainable by any means we’re currently good at.

    So for people who aren’t already busy managing not to look like they’ve got MS, I’m actually pretty baffled. My university’s just cancelled all international travel, and there’s stuff up in all the buildings, but likely the virus is quietly spreading locally because lots of people here travel to China and everywhere else, including a guy who was aboard the Diamond Princess.

    The scientists and I are agreed that the big fear is of viral mutation to something much more dangerous, but so far it doesn’t look as though this virus is a quick-changer; so far it seems content to hang out as itself. So I think most of the fear, or bafflement, depending on your temperament, is to do with the fact that we don’t know what this is, but it does seem to kill old fragile people at a pretty good clip. Then again, lots of things kill old fragile people at a pretty good clip. So we’re back to where we started.

      1. Well, sure. When it comes to how we deal with a disease that does that, though, it’s not by itself, or the first one, so how do we deal with those other ones? Pneumonia, for instance — there’s a vaccine for (literally) 23 kinds of bacterial pneumonia, and I recommend it. But it won’t protect you from viral pneumonia, and that kills a lot of old and otherwise fragile people. On the other hand, we don’t sequester people against viral pneumonia, usually.

        Maybe one way of looking at this is to do with the transmissibility rate: how contagious it is. If there’s a new kind of measles raging around and it catches like normal measles, you definitely want to hide out, because it’s incredibly contagious. But unless you’re extremely vulnerable you won’t avoid going out during flu season, even though the vax rate for flu isn’t good. And that means a few fragile people actually will pick up flu, and maybe even die from it, but most won’t.

        Unfortunately with this one we still don’t really know. We’re going off that 2-3 people per infected person number, but again there just isn’t enough info yet to know how accurate that is, how this one behaves. Which is why if you’re fragile, it makes sense to hide, but if not…I don’t know whether we’re behaving sensibly or not. And, come to think of it, that’s the thing that the medical people keep saying, and the press and general population have the hardest time with. The answer for now is “nobody knows, and we don’t know when we’ll know,” but everyone wants to know what to do right now.

  3. Ms Lab Rat is a wise and intrepid soul. Her honest writing opens our eyes to the daily challenges of living with a disability.

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