MS and Covid-19

Covid-19 Comeuppance

A true friend in the Time of Covid-19 is the friend who keeps track of your Day 14’s. The friend who texts at 9:01 am to ask, “Is this the anniversary? Is everything OK?” 

Today was a Day 14 for me…y’all know what I’m mean about a Day 14? It’s the 14th day after an event that didn’t used to have the potential to kill you, but does now. Highlights from my Day 14 Calendar include March 5 (14 days after a party conversation with someone returning from Covid-struck Italy), March 17 (14 days after an unwanted kiss from a nursing home denizen), and March 20 (14 days after exposure to a medical receptionist bronzed from her recent cruise.) 

Gentle Reader, you may have noticed all my aforementioned Day 14’s took place in March; I was very much an early adopter to the whole stay-at-home physical distancing thing. Up until now, my blog could be read as a great big Covid-19 Told ‘Ya So!

That would be a false impression. 

Two weeks ago, I had a painful comeuppance. I’d been congratulating myself on making what can only be considered a drastic lifestyle change; I’d gone from visiting some form of medical facility on an average of 3.5 times per week to preparing to stay the heck away from physicians and hospitals for the foreseeable future. 

I had downloaded my telemedicine app, accumulated the maximum refills on all my prescriptions, ditched the MS medication that was compromising my immunity, ditched the daily catheterizations that were leading to relentless UTIs. I was so done with being a part-time patient. So what if I had three auto-immune diseases? I’d been learning to cope with disease through a magical combination of an autoimmune diet, yoga, qi gong, and tai chi. I was ready to go physician-free! 

It did not occur to me that I was continuing to engage in a reckless practice that had, in the last six months, landed me once in the optician’s office and once in the ER.

You know the saying: fool me once, shame on you, fool me twice, shame on me? There is no saying for fool me three times, because the thrice-fooled are dead fools. Except, apparently, fools like me.

On the morning of April 16, I was feeling Covid-19 savvy for actually opening a new set of daily contact lenses instead of reusing the ones I’d worn the day before. The last time I’d seen my optician, she’d insisted that daily lenses weren’t made of the same material as the little slips of plastic that used to last me over a year. She’d commiserated with me about all the darn packaging waste, but promised that if I returned the spent packaging to her office, her office would forward it to the manufacturer, which claimed to have an environmentally sensitive plan for re-use. I dropped what would be my last two empty contact lens cases into the cloth storage bag within my bedside dresser, and proceeded to go about my day. I didn’t get very far before the inciting incident occurred. I was back in the bathroom, about to brush my teeth, when my husband called out something funny from his study; I laughed, then rubbed my eye. Like you are not supposed to do during Covid-19, and this is yet another reason why—out popped one very jagged half of the daily contact lens I had recently inserted. 

I poked around for the other half. Washed my hands. Poked around some more. Washed some more. Squirted contact lens solution. Rolled my eyes in front of the mirror. Rolled my eyes in front of my “eye-phone”—taking the most grotesque selfies imaginable. I called a nurse for any tips. The nurse’s tip: stay away from the optician. Stay away from the ER. Covid-19 likes to travel on the eyes. I called my primary care physician. She advised me to recruit my husband’s help. 

My husband is an upright guy. The man would chew glass for me. And I tell you…he’d probably prefer to chew glass than to mess around with searching for a contact lens shard in my eye. It was just too—nasty. Nonetheless, he stoically entered a ghastly new discovery phase in our marriage as he positioned himself above my head and squirted a continuous stream of contact lens fluid into my eye. To no avail. Our romantic New Year’s Eve agreement had been that we stay away from the ER in 2020. And now this man was suggesting we go to the ER. I decided to give it another round on my own. 

By 3pm, I’d had enough. My eyeball felt ragged. I hated letting down my primary care doctor, and my nurse. I hated endangering my husband. I hated endangering myself. But if this contact lens shard wasn’t showing up, an eye infection would be on the way. I countered my husband’s offer to drive me to the ER with a proposal that he drive me to our local optician. He liked that idea much better. It would be safer and cheaper. There. I’d managed to make one good decision to partially redeem my irredeemable self.  When I called the optician’s office, I recognized the voice on the other end as a technician I rather liked. Suddenly I no longer felt as though I were entering a realm of certain death, because I didn’t want to imagine that likeable guy as being in danger. 

My husband got me to the building five minutes after I got off the call. The technician was standing at the door, wearing a mask and gloves. It was strange to walk into an empty waiting room. I was the only patient in the building. In less than five minutes, the doctor was able to extract the shard that had eluded me for hours. The darn thing had been tucked underneath my eye at approximately the 7pm position. The doctor recommended I stop using contact lenses for the duration of Covid-19. The experience was sufficiently traumatic, so I’m taking his advice. 

My new Covid-19 look is a mask…and fogged up glasses. 

Stay well, Gentle Reader. May you and your loved ones keep your Covid-19 Calendars clear!

Words of Wisdom from the New Rochelle Containment Zone

Long time readers may recall my littlest sister, PYT aka Pretty Young Thing. She doesn’t have MS, or any chronic illness. But in true little sister style, she’s managed to become the center of attention…

I am blogging as a guest of Ms. Lab Rat today. It’s always nice when my big sis invites me to share her toys.
I have lived my life blissfully outside the MS maze. Every year researchers send me their MS sibling study and I share my boringly perfect health. I take no medicine. I have no difficulties doing anything (that’s a lie of course- I have great difficulty remembering to re-apply lipstick, and I tend to be self-absorbed) but what the study is really interested in is my balance and vision, my memory and peeing.
I have achieved ‘guest lab rat’ status because of COVID-19. I may not be in an NIH study but I AM living in the center of the New Rochelle ‘containment zone’. As I write this, it is Day 3. All quiet on the Eastern front. The National Guard is here cleaning and handing out food but I haven’t seen them. I’ve been on my silent street, watching my husband successfully coax our kids off training wheels. The road has fewer cars and they can ride longer stretches without needing to stop.
I have learned how to spell quarantine from assuring concerned friends over text that we are not, in fact, trapped here. My neighbors however have been quietly self quarantined for 15 days or so. It was easy to miss the absence of their presence. I realized too late that I hadn’t been asking if they need anything from the store- they do not.
Those of us who still roam free, stand on our lawns and discuss how surreal it is to be in the middle of a pandemic we were clearly not prepared for. We speculate on the ripple effects, share how our kids are reacting, is this a new seasonal reality, what it will do to the economy…and then we stop because we don’t even know what next week looks like.
I take my son out for a drive around town- grateful that children seem to be hardy in the face of this virus. If it were otherwise, I would be losing my mind. I have 3 kids around the age where fingers go in their nose and mouth and who only wash their hands when they are caught. This experience is making much better hand washers of us all.
I’ve made a point of going to the grocery store (even tho we are well stocked) so they have some business in return for staying open. I need them to be open in a week or two.
My son wants to ride in the car attached to the front of the shopping cart- he is 6 and barely fits. I’ve never asked him to wipe down the interior before but today I do…I’ve become that mom who sees germs on all the surfaces. On the cart handle, on the check out screen, on the cash back that I request, on the enormous stack of monopoly promotion cards the cashier hands me because there are few other customers to give them to. If we don’t win a boat, vacation home and screening room the game is certainly rigged.
I stop at the ice cream store to get a celebratory “training wheels are off” cake but mostly to give the poor clerk who showed up to work today something to do. While I am there, another customer orders a large cake for the team he is coaching- he imagines they will be celebrating the end of a multi-year run. I imagine the cake collecting freezer burn …no one is showing up to celebrate with their team. But I like his determination that the milestone should not be missed.
I drive by our TaiKwonDo studio and am happy to see students in the window- only to receive an email at night saying they’ve decided to close for a while too. I worry about how small businesses will survive this My husband reminds me that we just paid 6 months of a membership for 3 kids in advance. I am okay with that- they may not be as hard hit as others. I make a mental note to go back to the local hair salon, the one I had broken up with over bad color. I’ll get the Pheobe Waller-Bridge cut.
My fear isn’t that I will get sick. As I said at the top, I am boringly healthy. My fear is that I will get someone else sick. That I carry invisible COVID creepies to someone- like our heroic lab rat -and knock them off kilter. Or worse.
I reached this conclusion a day before our local institutions. I’ve taken it more to heart, and curtailed my own commute. We were all too late to the realization that our freedom to move must change.
What opened my eyes was our mother. I had invited her to lunch, a few days earlier, in the city. She’d cancelled a trip to Spain with my father for fear of COVID-19 . She drove into NYC instead of taking the train to avoid any risk of COVID-19. And then she sat down at a table with my husband and I, having lunch with two people who were likely closer to COVID-19 than her Spanish Air B & B hosts. I had not known she would later stop by our house- a block from the Temple which was ground zero for the cluster of infections- to drop off clothing to my kids. She was diligently curtailing her life to avoid exposure to a virus and my invitation led her to come hold hands with the hotspot, give it a kiss and a hug and head home to Connecticut, to my dad, with a little threat of Coronavirus hanging around the car. Being a good mother- she has not mentioned to me the oblivious selfishness of my invitation.
So if I have any wisdom to share from inside the containment zone it is to be more aware than I had been when this virus comes to your town- and it will. To be aware of your neighbors and what they may need. To be aware of your community. To be mindful of what you may carry along with you, as you carry on about your day. There are lab rats out there and they need every single one of us to think of their safety, even when we are secure in our own.

Stories from the Future

My son and his beloved MC in Thailand

Once my son and his girlfriend MC moved to China, they literally joined the future. They have a 12 hour head start on each day. They have had a long head start on the Corona Virus. Here is what they have to say.

Last night on her Instagram story, MC described their journey this way: 


Something tells me MC was a little rattled. Her usual delivery is quite measured. I would never expect her to dismiss other people’s decisions as “stupid.” 3,000 deaths can rattle a person.

Since their vacation in Thailand, my son and MC have been hopscotching around the virus, flying to Indonesia and then to Malaysia. They’ve been able to visit at least 10 temples. They’ve been able to work from a variety of Internet cafes. They’ve been privileged to hold American and Canadian passports, respectively. They’ve been privileged in that they don’t look like they are based in China. But my son is Chinese. One quarter Chinese. From the story he posted on Instagram last night, he is well aware that this is a fraught time to be Chinese.

Every day, I field anxious questions about these two. Everyone here has been worried about them. At this point, this intrepid couple is more worried about us. They know that our freedom loving lifestyle won’t permit the kind of measures that have flattened the curve of infections in Asia. They feel returning here would not be as safe as returning to Beijing. 

Can we be responsible enough with our freedom to prove them wrong?

Be well!

Ms. Lab Rat says, wash yer paws.

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!