safety

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.

Hard to Swallow

Location: Elephant Walk

Time: Another Monday night after a weekend of mass shootings

My husband and I are in our local Ethiopian/Indian restaurant. The owner is from India, his wife from Ethiopia. We are the only diners.

We’ve been seated at our usual booth. The sky outside is a vibrant post-thunderstorm blue, which reminds my husband of the skies in friendly Hawaii. We are far from friendly Hawaii. We are in Cincinnati, Ohio.

I am not seated on my usual side of the booth, facing outward. I am seated on my husband’s spot, the side facing the television. CNN is reporting on the latest mass shootings in Dayton, OH, and El Paso, Texas. Not Houston and Michigan, Uncle Joe. Not Toledo, President Trump. Dayton. El Paso. Say their names.

Protestors in Dayton are drowning out the meaningless thoughts-and-prayers speech our governor is attempting. “Do something!” The crowd roars. “Do something!”

Anyway.

As we wait for our meal, I mention that our son, who is midway through a two year contract in China, has posted on Instagram that he is not looking forward to returning to the United States.

I confess that I’d considered writing, “Then don’t return. I’d rather you live somewhere safer than somewhere closer.” But I hadn’t. I was too afraid a reply like that would manifest a cosmic comeuppance, in which our son settles somewhere with sounder gun laws (that would be anywhere) and somehow ends up getting shot. I have a lot of spooky superstitions about the power of the words I write. I am fearful they will manifest in some dark fashion. I long ago came to the conclusion that Trump has far too little accountability for the dark manifestations of the hateful words he tweets. And now this.

I am the usual subject switcher in our marital conversations. But everything is flipped tonight, so it’s my husband who switches the subject. He asks me about my morning physical therapy session. I tell him it was quite a workout.

“What did you do?”

“I swallowed. Eighty times.”

He laughs.

“You mean you sat in a room with someone and she watched you swallow eighty times? That sounds boring.”

“Boring? It’s suspenseful. You try five dry swallows in a row.”

My husband is on the other side of the swallow spectrum. If offered a glass of water with his Tylenol, he will invariably turn down the water, and take the Tylenol dry—whereas I seem to require half a glass of water at minimum to get a Tylenol down. He blithely accepts my dry swallow challenge. His first two dry swallows go easily, as we’d expected. The third swallow is an effort. The fourth is a struggle. The fifth swallow is…as painful to watch as CNN.

“That wasn’t as easy as I thought it would be.”

“I tell you, it’s a workout.”

My husband is the reason I’m going to swallow therapy. I’ve gotten in the nasty habit of choking during our meals. When he’d told me he was considering taking a CPR class, I’d told him that my friend M., who also has MS, had managed to improve her swallowing through physical therapy. He was all for my signing up.

His appetizer arrives—five pieces of ayib begomen—which are usually stuffed with collard greens but today, opposite day, the ayib begomen is stuffed with cabbage and mushrooms. He invites me to help myself to a piece.

To qualify for physical therapy. I’d had to drink barium “juice,” eat barium “applesauce” and down a barium “cracker.” It was all very cinematic.  There was a doctor to film the process, a doctor to narrate the process, and a technician to be—I don’t know, be the “gaffer” or “best boy”—one of those roles that are far down on the credits. I, of course, was the star/villain. It was revealed that when I made the motions of swallowing, I was actually stowing quite a bit of residue in my throat. The narrator doctor, the David Attenborough of the whole production, concluded that my tongue was weak.

Ouch.

I’ve never been accused of having a weak tongue before. A sharp tongue, yes. Back in the day. Never a weak tongue.

To make matters more menacing, my tongue was deemed more weak on one side than the other.

Twisted.

I taste today’s version of ayib begoman: I am a big fan of the usual collard green filling, but I appreciate the how the substitute cabbage cuts a subtle counterpoint to umami goodness of the substitute mushrooms.

Thanks to swallow therapy, I am paying attention as I chew this food. I realize my habit would be to stash half of a mouthful in my cheek, like a squirrel, and then swallow the other half. Not this time. I swallow both halves: a nice, forceful swallow. I imagine my therapist saying, “You’ve got this!” Rather than chase the ayib begoman with a demure little sip of water, as is my habit, I swig a big hearty gulp of water. Then I pat myself on the back. Yes, I do that. If I achieve something that requires a little push, I give myself a little pat.

My husband looks at me quizzically.

“My therapist tells me to think of each swallow as a push up. I just did two pushups.”

He says, “Good job. You’re not even talking with your mouth full.”

I share my revelation about my chipmunk habit. “So technically, all these years I’ve been talking to you with my mouth half full.”

It would be terrifying to blame my difficulty swallowing on multiple sclerosis. So I don’t.

If I blame my own bad habits, I can do something.

The proprietor is staring at the protestors on the screen, who are chanting in Dayton, forty-eight miles away.

Do something. Theme of the day.

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I Want Safe Drugs

Yesterday, Big Pharma bankrolled my 7am flight to DC and my subsequent MRI at the NIH. I’ve been feeling wretched, despite the experimental drug I’ve been taking for multiple sclerosis, and I wanted to know why. My return flight arrived six hours late, at 1:30 this morning. A few hours later, I got a call from the NIH. The MRI report is not complete, but so far it shows that I have one new contrasting lesion.
Question: what should I do about this lesion?
It is very likely that a course of IV steroids would zap me back into health. My neurologist claims there’s no long term benefit, but I’ll take a short term benefit if it means I’ll no longer be dizzy and nauseous and fatigued and tingly and struggling with my gait. Besides, in my personal experience, the relapses that I haven’t treated with steroids were the ones that produced the symptoms that persist. I once skipped a round of steroids so I could take a vacation in Maine. The tingling in my fingertips with every tap of the keyboard serves as a suggestion that maybe I should have delayed the trip a couple days.
A course of IV steroids is nothing to take lightly. For one thing, it’s expensive. That’s no problem. We have insurance. We have money. We can afford it.
For another thing, a course of IV steroids is physically and psychologically grueling. I’m likely to get ornery. I’m likely to get hungry. I’m not all that likely to get any sleep. My family and I will have to endure a few days of my feeling like a big fat angry monster. No problem. We’ve survived rounds of steroids before.
We’ve been lucky to survive. Because here’s the real problem: It’s a social, economic, and political matter, and it concerns you, gentle reader, and every person you know who takes or will take a drug.
You may not be aware of this, but the ingredients in our drugs are increasingly manufactured in India and China. What with illness and travel, I’ve been behind the Times, so to speak, and only just now got around to reading Saturday’s front page article, “Deal in Place for Inspecting Foreign Drug Suppliers, A Glimpse at Suppliers in Shadows Abroad.”
Apparently, “More than 80 percent of the active ingredients for drugs sold in the United States are made abroad, mostly in a shadowy network of facilities in China and India that are rarely visited by government inspectors”
This is a problem.
I don’t know where the steroids are coming from. But I do know they are typically flushed with heparin. Does the name “heparin” sound vaguely familiar to you? You might recall the scandal a few years back, when “Chinese manufacturers deliberately substituted a cheap fake for the dried pig intestines used to make the blood-thinning drug heparin. The tainted drug was linked to 81 deaths and exposed tens of thousands of people to danger. The F.D.A. never inspected the plants making the crucial ingredients, a larger problem that only now, more than three years later, may be fixed.”
What if that heparin problem isn’t fixed? Do I unwitting submit to paying for “a cheap fake” coursing through my veins? Or do I not take the drug, and continue to suffer?
Now, the whole purpose of the Times article was to celebrate a “breakthrough” in foreign inspection. There is currently legislation on the table. “The proposed solution to this problem is for generic pharma companies to pay the FDA $299 million/year to send representatives from the FDA all around the world for bi-annual inspections.”
I don’t think too highly of this solution.
There’s one other issue that’s been in the papers lately. Way too many Americans are out of work.
Why not bring the drug manufacturing jobs back to the USA?
Drugs could be more easily inspected. Americans could get back to work again. Patients like me can feel confident that the drugs we are taking will help us, not harm us. Drug companies, generic and non-generic, can avoid further scandal, like the Tylenol debacle that broke out just today.
As a lab rat, I have some inkling of all the care and expense and governmental cooperation that goes into testing a new drug. Why let that work go to waste with a sloppy end product?
I may just use my steroid fueled ornery energy to see what a big fat angry monster can do to get some real change going in the way our drugs are manufactured and inspected. I believe there’s a real opportunity for the first major drug company to tout their drugs as being manufactured and monitored right here in the USA.

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