Ballad of the Rejected Ballot Applicant

Absentee Ballot Application 1: 

Once it became clear that Covid was going to linger through primary election season, I was grateful to learn that I would not have to break my Covid quarantine to perform this most essential duty. The State of Ohio offers mail-in voting. Easy! Once I printed out my application, I urged my husband to apply as well. I nested our two applications in the same envelope, fully expecting to receive two ballots in return. This is what we received instead: My husband got a ballot. I got a rejection—a check mark in the box next to: no signature

My instant response was one of deep shame. Could I have forgotten to sign my name? I’d been so excited. Had I been too excited, so eager to mail the envelope that I didn’t  notice I hadn’t signed the form? It didn’t seem possible. But it didn’t seem entirely impossible, either. Who was I to call The Hamilton County Board of Elections a liar?  I make mistakes sometimes.

I considered sending a second application form to vote absentee in the primary. But at that point, I didn’t think it likely I’d receive a ballot in time. So I gave up on voting in the primary. 

My shame only increased as I saw footage of people braver than myself enduring long lines in the primaries in Wisconsin and Georgia. Surely some of those voters were also coping with multiple autoimmune diseases, yet they were out there, risking the possibility of Covid. What made me more special than them? Nothing. And what about all those voters before us who had risked their lives, even lost their lives, to exercise their right to vote? 

Missing the primary was bad, even if my preferred Democratic nominees had dropped out of the race by that point anyway. 

Missing the November election would be inexcusable.

Absentee Ballot Application 2: 

I downloaded the application for an absentee ballot for November’s election. This time, I was going to do it right. I made sure I signed the form. I made sure I took a picture of the form,  signature and all. 

And this time I got the same response as before—a check mark in the box next to: no signature

Gentle reader, you might be looking at my signature, and conceding that the Hamilton County Board of Elections may have a point. I know. I know. My husband describes my signature is “a bit whack.” When I was a teenager, folks used to look at that very same signature and tell me I would grow up to be a doctor. Would you take the right to vote away from a doctor? Then why take it away from her patient?


I left a possibly indignant message on the Hamilton County Board of Elections answering machine, and then I went ahead and printed out, filled out, and photographed…

Absentee Ballot Application 3: 

A few days after I mailed my third application for an absentee ballot from the Hamilton County Board of Elections, I received a phone call from a kind sounding lady, who was responding to my (possibly less than kind?) phone message. She dredged up my paperwork and the original signature they had on file, and described it to me as having a loop and a few small bumps, and then a big bump and then a line, as opposed to my most recent signature, which she described as having a bump, and then another bump, and then a tail. 

Gentle Readers, I played my disability card. I explained I have multiple sclerosis, a degenerative disabling disease. My signature was likely to have deteriorated over time. She recommended I send another application, and to add her initials to the outside of the envelope this time. 

The truth is, I remember the first time I signed my name to a vote in Hamilton County. It was many years—and perhaps as many brain lesions ago, but I remember it like it was yesterday, because it was a big deal to me. Voting is always a big deal to me. I remember I signed my name very slowly, and very deliberately, summoning up each and every letter as neatly as I could. I gave it all I got, gussied up my signature in high heels for the government. And I remember a flash of anxiety…would I ever be able to duplicate this signature? Had I made the wrong move? Gentle Reader, I had made the wrong move entirely.  

A few days later, I received an Authorization to Update Signature on Registration Record from the Hamilton County Board of Elections. The form contained two more opportunities to affix my signature. I tried to keep the two signatures as similar to each other as possible, so as to keep them from cancelling each other out. 

When I mailed that form, I thought I’d made my case. I kind of figured I’d get a ballot back. No such luck. 

Last week, I felt a flutter of anxiety as I watched Michelle Obama lean toward the camera and exhort us to persist. 

“We’ve got to request our mail-in ballots right now, tonight, and send them back immediately and follow up to make sure they’re received.”

Tonight, I downloaded: 

Absentee Ballot Application 4. 

I signed my ballot application. I took a picture of it. I put two stamps on the envelope for good measure. (And for the good of the postal service, which is in just as much peril as our right to vote.)

And then I wrote this blog post.  I asked my husband what he thought of it. He responded, “If you want to make your argument more forceful, I would say, do not include your signature.” 

“But this is my signature!” I protested. 

Here’s the problem: if I were to try to reproduce my signature in high heels, I would be likely to fail. Would I scrawl sensible heels one time, and nine inch heels the next? My natural signature is mildly inconsistent. I fear a fancified signature would be madly inconsistent. 

Besides, don’t you think my current signature goes nicely with the wavy logo on the Hamilton County Board of Elections? Could maybe, this time, we all just get along and go with the flow?

Maybe not. My current signature doesn’t look like my signature in Absentee Ballot Application 2! 

If someone is motivated to reject it, they will reject it. Maybe not now.

Maybe on Election Day. 

Should I just give up? Vote in person? I have never had my signature questioned in person. People are nicer in person, don’t you think?

Wish me luck. Wish the fate of our democracy luck.

Racism is an Auto-Immune Disease


Anti-racism advocate Jane Elliot says, “The number one freedom that white people have in America, is the freedom to remain totally ignorant about the injustice committed against those who are other than white.”

I can’t see how even most lily white reader can remain totally ignorant of police brutality in this country since the era of body cams and cell phones. And yet police brutality persists. Let’s take ignorance off the table. Something more intentional is going on.


Gentle Reader, since the murder of George Floyd under the knee of a Minneapolis police officer, I have been unable to fill this space with the posts you’ve come to expect, in which Ms. Lab Rat finds a new way to confront some problem with her ever unruly immune system, shares her discovery, and exhorts you to stay well.


I don’t want this page to be a refuge from the news that’s coming in from protests all over the country, images of people who have had enough of police brutality, and images of the police responding with more brutality. (Have you noticed how no funds have been spared to boost our police force with a seemingly endless supply of body armor, rubber bullets and pepper spray? Wait… is this the same country that can’t afford to outfit our health care workers with PPEs or to provide them with hazard pay?)


Our tax dollars are clearly not for the preservation of human life, but for the preservation of white supremacy.


The police in my city have taken down the American flag, and replaced it with a Thin Blue Line flag. In my mind, that is an unpatriotic action. But maybe the America I believe in was a white-washed America, an America that didn’t much acknowledge it was built on genocide and slavery and exploitation and extraction and domination and never gave a damn about black lives, thank you very much.


Darn it, I’m doing exactly what I was hoping to not do. I’m reacting. Multiple Sclerosis is a harsh teacher; this disease has taught me the hard way that when I react to a negative stimulus, I hurt myself. I’ve been working to be less reactive… and more responsive. What does that mean, exactly? To be responsive is to look directly at negative stimulus, and step back. Identify it. Identify how it makes you feel.


I’ve stepped back. I’ll tell you how I feel; I feel sick. It’s a sick, sick country that prefers to handcuff hundreds of protestors than to handcuff four bad caps.


Over the years of taming my MS, I’ve learned to take the long view on a problem. Take the problem of anti-maskers demanding their rights to freely spread Covid wherever they feel like; I’ve managed to take the long view and not get so mad at the anti-maskers that I wish for them to suffer the consequence of their actions and contract Covid themselves. I’m fully aware that if my wish were to come true, the anti-maskers could spread it to undeserving people, such as those underfunded health care workers I was talking about. For a fable-quality twist of fate, the Covid could spread to the ill-wisher: me.

The bad news about Covid is also the good news; we are all interconnected.

I’d have to take an incredibly long view to see any end to racism, which isn’t going to go away at the end of this news cycle. Clearly, it has not gotten fixed; according to Professor Kehinde Andrews, it will never get fixed within the White Supremacist system, the only system any of us has ever known. Andrews says, “Because the symptoms of racism are deadly, we often focus on these symptoms. Just like with anything, if you treat the symptoms and you don’t treat the disease, you’re still going to be sick. The disease is capitalism.”


Gentle reader, stay safe. In these frightening times, do your best to live in power, and not in fear. Let’s all work for a society that is fair, just, equal, and loving. For those of you who are also seek to learn how to respond, rather than react, consult this excellent talk by Tara Brach. The more we all practice mindfulness meditation, the more we activate the prefrontal cortex, the part of our brain that operates on a basis of morality.

Be well! Be generous with the resources you have gained. We are all connected.

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!

Don’t Ask for Permission. Ask for Forgiveness. Update from the NIH on which MS medications are safe and which make you more vulnerable to Covid-19.

The email I was hoping to get three weeks ago has just arrived in my inbox. The researchers running the clinical trial I skipped last week have finally come to the conclusion that maybe non-essential visits to the NIH (National Institutes of Health) are not such a good idea, after all.

The letter then went on to confirm that the MS drug I’ve been taking makes me moderately more immune-compromised, and therefore more vulnerable to Covid-19. Fortunately, I hadn’t waited for notification from the NIH, or from my neurologist. My dear friend MD (not a doctor) had prompted me to do a risk benefit analysis of taking Tecfidera in the age of Covid-19. I already knew Tecfidera is fairly useless at this stage in my disease, so it didn’t have any benefit to balance even the faintest risk. I’ve been off Tecfidera for three weeks now, and only regret that I didn’t get off it sooner.

I did go through the motions and wrote to “ask” my neurologist if he thought discontinuing my MS medication would be a good idea.

“Hello. I was wondering what you would think about my dropping Tecfidera? At this point I am more scared of Covid-19 than of MS. If Tecfidera lowers my immunity to Covid-19 even slightly, that’s not worth it to me, especially since there is little evidence Tecfidera is very effective against late stage MS. My first priority is to stay alive. What would you do, if you were me?”

I’d been off Tecfidera for two days when I got his response, “Although Tecfidera has not drop your lymphocyte but I can not say for sure it does not weakened your immune system. I understand and agree with you on holding it for now.”

One of the perks of being a lab rat is that you get to learn wonderful information from the leading minds in the field. I’d like to share the passage in the email from the principal investigator of my NIH trial. The passage outlines the role various MS medications play in potentially heightening vulnerability to threats like Covid-19. Perhaps this assessment will inspire others on MS medications to “ask” their neurologist about continuing on their drug:

What to do if your private neurologist is prescribing you a multiple sclerosis (MS) drug.

Not all MS drugs are the same when it comes to their effect on immune system and specifically, on the part of immune system that is important for fighting viral infections such as the coronavirus.

Based on current knowledge, I believe that it is safe to start or continue any preparation of interferon beta (i.e., Avonex, Rebif, Betaseron, Extavia, Plegridy). In fact, even though we do not know if interferon beta preparations inhibit COVID19 virus, these drugs do inhibit similar viruses in a test tube and likely in humans. Therefore, there is theoretical possibility that these drugs may in fact be beneficial.

Similarly, glatiramer preparations (i.e., Copaxone, Glatopa, Glatiramer acetate) are unlikely to suppress your immunity against viruses and should be safe to start or continue.

MS patients on all other medications should be considered immunocompromised and therefore at greater risk of COVID19 infection. We have shown that when taking data from >28,000 MS patients who participated in clinical trials of these medications, the beneficial effects of all MS drugs decrease with the age of patients so that after age 53, these drugs do not slow progression of disability compared to sugar pill called placebo. This does not mean that current drugs should not be given to any person older than age 53. In fact, we do recommend these drugs to patients older than age 53 if they still experience MS relapses and if they make lot of new lesions on brain or spinal cord MRI. If you are older than age 53, have not had MS relapse for several years and your MRI is not showing new lesions, you may want to discuss with your private neurologist whether you should continue your MS drugs, especially during COVID19 threat. These drugs do lower your immunity and we have seen serious infections (with other pathogens than COVID19) in older people with MS. “

The letter also has a lovely section with advice for those of you gentle readers who do not have MS.

I am sharing that section as well:

What should everybody do to protect themselves from COVID19 infection

Everybody, whether they are young or old, have MS, other disease or are completely healthy, are receiving immunosuppressive treatments or not, should immediately take precautionary measures consisting of:

  • Social distancing: try to keep 6 feet away from other people. After closer social contact, wash your hands with soap and water for at least 20 seconds. The virus does not survive soap and water. You do not need to use other measures if you have soap and water available.
  • Hand hygiene: wash your hands with soap and water as described above several times per day and always after close contact with other human being, or when you are outside and have touched surfaces that were touched by other people. Because you are unlikely to have soap and water when you are outside of your house, use hand sanitizers.
  • Avoid touching your eyes, face, mouth.
  • If you get fever, shortness of breath, dry cough, malaise – call your doctor. Do not go to medical centers. Your doctor will determine whether you need COVID19 screening test and will arrange for you to get the test. You should go to medical center/call ambulance only if you have problems with breathing (shortness of breath: breathing heavily, frequently and having bluish lips) – then you should not wait to talk to your doctor.
  • It does not help you if you are doing everything right, but your family members are not: the same rules for social isolation and hand hygiene must apply to your family members and anybody who enters your house.
  • Worrying will not help you. Worrying increases hormones steroids, which suppress immune system. If you allow yourself to worry, you are effectively hurting yourself. Not everything is within our control: we need to do things that are within our control and let go of the rest. Meditate, listen to birds singing outside, read books, talk to loved ones on the phone, stay positive.”

Gentle Reader, be well! Be good. But don’t be meek. Don’t wait for permission to take care of yourself!

Update 05/06/2020

Today I read that there is some evidence that Ocrevus was actually helpful for an MS patient in Italy who contracted Covid-19. I’m so happy to learn people on Ocrevus may not necessarily have to choose between protecting themselves from Covid-19 and protecting themselves from MS!

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.

Who is Ms. Lab Rat without the Maze?

Last week, when Covid-19 still seemed an abstraction to many in the US, I made the decision to self-sequester and to drop all unnecessary activities. It was a no-brainer to drop my writing workshop at a local senior center, especially since I am immune-compromised myself. But I vacillated for days about dropping my clinic visit at the NIH (National Institutes of Health). 

Maybe that’s because I’ve formed an identity around participation in clinical trials, as this video, and indeed this blog, attests.

Currently, I am enrolled in not one, but two, clinical trials at the NIH. Participation in the first of these trials is contingent on this little lab rat reporting to the maze every six months. I’ve been a fairly compliant lab rat. But as the threat of Covid-19 became more imminent by the day, I became more and more leery of jumping back in the maze.

What if I were exposed to the virus on the airplane, or on the Metro, or at the NIH itself?

As the date of the clinic visit approached, I half expected the clinic would cancel my appointment for me. With less than a week to go, the clinic had yet to send me the usual itinerary, or to arrange my flight. The email I finally got from the clinic coordinator was not a cancellation, but rather an offer to splurge on a taxi for me. Which was a nice gesture. The clinic would be sparing me from exposure to the virus on the Metro. But…while they were at it, why not spare me from exposure to the virus in the clinic, or on the flight?

I’m embarrassed to admit that it took me days to consider the inverse of these scenarios. Rather than worrying about catching the virus from those I would encounter — why had I not been worrying about the possibility that I am myself a carrier of the virus, and could therefore pose a danger to others? What if I were to infect the clever nurses, the intrepid doctor, my fellow lab rats, and perhaps the lovely cashier at the hospital cafeteria?

I wouldn’t be able to live with myself. 

I cancelled the appointment. 

Yesterday, I was relieved to discover that my on-again, off-again fever was on again. I emailed the clinic that I had a temp of 99.6… which is next to nothing, as fevers go, but would be high enough to disqualify me from lodgings at the NIH.

The world around here is about to get a lot scarier. It’s about time I get used to the thought that it isn’t anyone else’s job to save me. I wish I hadn’t felt I needed an excuse to legitimize trusting my own sense of self-preservation over the professed concerns for my safety from the NIH. But I did. 

Was I worried that this somewhat indefinite postponement of my clinic visit would mean I lose my Lab Rat status?

Not at all. Gentle Readers, you may recall I that mentioned I was enrolled in two clinical trials. The trial I haven’t yet mentioned  is one I participate in from the safety of my home. I am one of 25 lab rats beta-testing a series of games on smartphones. These games are designed to measure neurological functions. While this smartphone app may never take the place of a clinic visit, it may yet prove helpful in situations where a patient can’t show up in a clinic. Like, ya know…in a crazy dystopian scenario where a mysterious virus is taking over the planet and an MS patient no longer feels it’s all that safe to travel. 

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!

Who Forgot Her Yoga Pants?

My husband and I love our quirky uptown neighborhood of Clifton. We love Clifton for its diversity, its walkability, its independent movie theater, its big urban park. When we moved here sixteen years ago, we noticed that there were an awful lot of eccentric looking, opinionated old folks drifting around Clifton. The scene I’m about to describe from this morning is all too typical.

Setting: Checkout counter at CVS Pharmacy on Ludlow Ave, 9:10 am

Middle aged lady, silver streaked hair in a messy bun, wears an embroidered dress, bare legs, no socks, and school-bus yellow Converses. She plops a pair of gray yoga pants onto the CVS counter.

Middle aged lady: “I walked all the way to yoga class and forgot I wasn’t wearing any bike shorts underneath.”

CVS employee: “Would you care to add a donation to fight Alzheimer’s?”

Middle aged lady: “No way. I’m not going to help you look like the good guys when you sell drugs like Benadryl, which have a 50% correlation with dementia.”

CVS employee: “Have a nice day.”

Had I been standing in line behind that middle aged lady, I might have rolled my eyes to express sympathy for the poor check out guy, who has just been lumped in with those CVS top executives choosing to ignore the mounting evidence that drugs they sell daily are largely responsible for the growing epidemic of dementia. But I didn’t get the chance to roll my eyes at that middle aged lady, because I am that middle aged lady. Doctors I trusted have exposed me to a number of anticholinergic drugs, which are in the same risky class of medication as Benadryl.

The first time I was on a drug to calm down my bladder, I noticed right away that I was not participating in conversations as fluently as usual. When it eventually occurred to me to look up the side effects of my new medication, I read about “drowsiness,” “memory problems” and “dementia.” My urogynecologist laughed at me when I complained the medicine made my thinking fuzzy. “You’d rather think? And run around having to pee?” I quit the medication and fired that doctor. Then found that every subsequent urogynecologist was equally eager to fill a prescription for an anticholinergic drug, even after I made my preferences known, even after data from study after study confirmed an eery “correlation” between these drugs and dementia. Apparently as long as big $ is being made, this “correlation” won’t be labeled a “causation.”

That’s why I’m forever grateful to Kevin, my local pharmacist at Clifton GHA. Kevin alerted me when my current urogynecologist snuck in a prescription for an anticholinergic medication, despite my stated aversion to that class of medication. From now on, I’ll add the folks at GHA to the reasons to love my quirky little uptown neighborhood of Clifton.

Gentle Reader, if you are nervous about the side effects of your own medications, don’t listen to dotty Ms. Lab Rat. Listen to the bloggers at Harvard medical school:

“One of the best ways to make sure you’re taking the most effective drugs is to dump all your medications — prescription and nonprescription — into a bag and bring them to your next appointment with your primary care doctor.”

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.