Needles, Live-Orals and Sequelae (1/31/21)
Updated: Feb 20, 2021
On 3/13/20, in the wake of unnerving news-briefs, uncertainty and disbelief, my academic institution told us: “Take home what you think you’ll need to telework for … the foreseeable future.” My colleague Wendy and I looked at each other and shrugged. Foreseeable. Future. The kinds of words that hold no content, only hindsight.
Laptop, check. Step 2 CS ‘first aid’ study book, yes. Couple of thumb drives. The vitamins, tea bags, moisturizer in my desk drawer, cash for the little Market across from the library? Eh. Leave. How about my mother’s first quilt, fashioned for my 30th birthday, hanging behind my desk, or framed diplomas on the wall, two lamps from home, large monitor? Too large to haul the half-mile to my car, not really ‘essential.’ We had no real reference point for global pandemic shut-down. “Make sure to clean out any food in your offices,” they added.
In my mini-fridge, I found the empty box of “live attenuated Salmonella typhi” that needed to stay cold. I’d taken all the doses weeks earlier, but thought I’d save the details. Otherwise I might not believe I’d willfully swallowed Salmonella, even to prevent typhoid. According to State Dept. travel guidance, that and the Hep-A vaccine were recommended for a work trip to Malaysia in late-Feb/early-March; seems “even the nicest hotels present risk” through food and water.
The Hep A vax had gone through a needle into my arm in early February. My doctor said, “Get the second dose in 6 months; you’ll be covered for life.” Shots never really bothered me. I like the vaccinating part much more than I dislike the puncturing part. (Each year when Wendy and I get our university-sponsored flu-shots, I joke, “I wish I could get back in line and do it again – like I do when I vote.” She is remarkably tolerant of my annual jokes.)
The summer before, the two-dose Shingrix vaccine laid me out like an actual flu, but to sleep, solid and deep like that, was almost a vacation. I’d do it again tomorrow, not to suffer shingles like my brother Mark or several friends have.
Even when I needed 90 days of rabies shots in the summer of 2001, into alternating arms at lengthening intervals, my medical director at the time said, “No, people don’t survive rabies.” Rich added, “Well, a person might, but you wouldn’t want to.” I had awoken in my bed at 2:45 am (15 minutes before my alarm was set to go off) by some whirring and breezy annoyance around my head. When I turned on the light, a bat was flapping wildly all around my bedroom. He or she had left bits of bat-poop on my pillow. Then I heard it going thunk, thunkthunk, thunk in my bathtub. I only wanted it out of my condo. I had to make a set call at 4:30 am downtown, “camera-ready” for film production (“Minority Report”).
I saved that bat-poop in a Ziploc bag in my fridge, thinking maybe they could test it. No such luck. I hadn't considered being at-risk until Rich, an infectious-disease doc, told me I had to call the health department.
Since I managed to shoo the bat out through my sliding-glass doors – rather than kill the creature – they could not test for rabies. CDC says a sleeping person could have been bitten and not know – bat saliva holds a kind of anesthetic, and their tiny teeth marks could be under your hair. It never occurred to me to try to kill the poor thing, clearly lost and confused and as panicked as I was. So I needed an initial dose of immune globulin, followed by many weeks of post-exposure prophylaxis. That bat-poop stayed in my fridge until I sold my condo, years later; I'd almost forgotten all about it, but almost considered it valuable.
Like the empty box of typhoid vax in my office fridge. On 3/13/20, I had also not just returned from that conference in Kuala Lumpur, Malaysia. When I learned I was a finalist for an innovation award in December 2019, I applied for a travel scholarship, and thankfully got it. My first venture to Asia! I would pay for part of the trip, make a couple of stops en route -- a night in San Diego to see my brother and nieces there, then a quick stop in Hawaii -- never been. My current medical-director, John, sent me a hiking map for a railway trailhead in Oahu. Sweet. (He gives me grief for keeping my U.S. passport in my coat pocket. “But you never know when you’ll need to flee the country,” I explain.) From Hawaii I would change planes in Japan and head to Malaysia -- learn, schmooze, present, get inspired, then take a week to explore, maybe cross into Thailand. (An inherent traveler, I’ve read that the exploring urge may be genetic .) So hit me with another needle, plus live-oral pills. A whole new continent to dip a toe into. Heading into 2020 like a boss!
Bought plane tickets on January 5th. On January 9th, news from Wuhan, a novel coronavirus. Soon a cascade of overflowing ICUs and morgues, languishing cruise ships, lockdowns, empathy, disbelief, confusion. Around the time of my Hep-A shot, a U.S. ‘public health emergency.’ Soon the conference organizers announced that anyone not comfortable with traveling to Kuala Lumpur could audio-record their Powerpoints and still present and attend, virtually. What to do? My colleagues who’d also registered -- Carrie, Ming and Adi -- hadn’t decided.
Meanwhile, a series of mammograms led me to a “stereotactic needle biopsy.” Had to Google “stereotactic.” Essentially, my left breast would be smooshed between mammographic plates (as per usual) but a needle would then puncture that breast, to extract tissue from the troublesome mass, for lab-testing its possible malignancy. Needles didn’t bother me, right? But golly, that all sounded super-fun.
The very first vaccine I could remember was oral, like my typhoid pills. My mother took the pack of us to the local high-school to stand in line for a polio vaccine. We’d heard the word polio, even as preschoolers; it held fear and profound sympathy in the adults that surrounded us. At the front of the line the nurse offered me a cube of sugar. “Here, put this in your mouth.” She was obviously completely testing me. We were not allowed to eat cubes of sugar. I think I laughed. My mother waited. The nurse waited. My composure sobered. “Really? It’s okay?” Together they said, “It’s okay.” The nurse added, “It has medicine, and will keep you healthy.”
I took the sugar cube in my little fist and popped it in my mouth. Best. Strangest. Vaccine. Ever.
The first needle I remember? Multi-pronged and punched into my left shoulder, to guard against smallpox. Another word that inspired fear, if more abstractly, in adults. We toddlers had all endured raging chicken-pox in our household. I did not understand the connection to chickens, parts of which we ate, periodically, and found delicious. The enormity of trying to understand, what? Words. Things we put in our mouths. The smaller poxes.
“This will scab up, but don’t touch it. Let it fall off by itself.” No worries, doctor, I knew what scab meant. I’d had plenty of those, from sidewalks. Soon I watched a giant, dimensional continent of purple emerge on my left shoulder. It itched, but mostly I did not touch it. I only petted its surface. Utterly fascinating. That my own arm-skin, especially when I wore a sleeveless shirt, could hold such a geography of protection. Are we ever too young to begin a career in existential musing?
Then, a day never to forget -- sunny, summertime, tired, after running, digging, chasing. Now relaxing in a chair of woven plastic strips, taut and rough, in our backyard. My legs and sneakers stretched out completely; nothing of me extended beyond the plastic plaid seat. I loved that folding chair and how it fit me, perfectly. Sometimes – no, daily – I needed time alone. To think about things, and nothing, after running myself silly at age 4 or 5. Especially outside such a crowded house. I had checked my shoulder scab for the thousandth time just before relaxing in that chair. I checked again.
A smooth, pinker splotch of shoulder winked up at me. My scab! I jumped off the chair and dropped to the ground. My small fingers combed and spread the blades of grass, inch by inch. I sobbed, briefly. Fallen – clean – off my body, when it had just been, moments earlier, part of my body. The most interesting part of my body! They’d said the scab would fall off, but not that it would be lost. After several minutes of searching, I recognized how futile the effort. Part of myself was now part of the grass, our yard, the earth itself. Dashing through the back door to the kitchen, I tried to explain all this to my mother. She only fractionally, emotionally, understood my trauma. Are we ever too young to begin a career in existential loneliness?
A memory even earlier: curious about a penny I found, which I think I knew held the least value of all the money, and might just be swallowable, even though I understood it was not food, but I wondered if I could swallow it, then did. It went down pretty rough. My chest and belly did not feel right. I decided to mention it to my mother, who decided to pick up the kitchen wall-phone and mention it to the doctor. She relayed that we needed “to watch your boomeys (bowel movements) and make sure it comes out.” This was an interesting development. Faithfully over the next day or two, I studied my poop inside the toilet bowl, and indeed, at one point saw a crescent-moon of copper reaching out of the brown. Since my mother had told me to tell her whenever I needed to make a boomey, she was right there when I shouted and pointed. I shot my arm into the bowl, to dig out the penny. “No no no! Don’t touch it!” My arm seized still. Wait, what? “Weren’t we watching for it?” She said, “Yes, but only to make sure it came out. Now we can flush.” (So all that watching was just to get rid of it? Didn’t we need it back because it was money?) Maybe I had wanted to save it, after all that. But. She had already pushed the handle.
Years later on a visit home during college and after my parents divorced, I came across a small diary of my father’s in a box in the basement. (I’d been asked to ‘take what you want before I toss things’ by my mother; she was downsizing to a large condo.) One passage from the diary, dated when I was 3 and my sister Lori was 4: “Took Lor and Muff to the store with me after dinner and let them pick out a candy bar. When it came time to brush teeth, Muff still had the nuts in her mouth.”
So I had wanted to save them, the nuts? Or had liked the salty-sweet feel of them against my tongue and teeth, so I‘d held them there after all the chocolate was gone? Or … I had less faith in the existence of nuts, or my opportunity to hold them inside my mouth for an hour, beyond that very night? I’d carried no memory of that episode, but it sure sounded like me.
I left the diary in the box; it was not mine to save, and the story had already nestled into a pouch of my brain. A pouch of my brain and my sense of self and all that surrounds both their limits and their permeability.
The meninges are membranes surrounding the brain and spinal cord. Hands down, the most frightening needle of my life was many times thicker than that of any vaccinating shot. When I was 41, I awoke with nausea, then vomited yellow bile. The night before, I’d fed Caddy the cocker-spaniel and gone out to the mall to look for something new for a trip to Flagstaff the following week. My now-ex was there on a long business trip. A saleswoman approached to ask if I needed help finding anything. “I’m sorry,” I said. I have a terrible headache all the sudden. I have to go home.”
Many, many hours later and after a new migraine treatment (which helped zero) then an MRI (no evidence of subarachnoid hemorrhage, and so exhausted I fell asleep in the machine in spite of its noise) they still couldn’t treat my pain. “Not until we know what’s causing it.” Made sense, sounded like good care, but sweet Jesus, I remember thinking in the ICU bay, ‘if someone could just kill me now, I’d be so grateful.’
Into day 2 of that 10/10 headache and no sleep, they finally paged a surgeon to do a lumbar puncture.
I signed the consent forms in the wee hours, nearly delirious. The surgeon walked in, clearly unhappy; if nothing else, I still had faculties for appreciating non-verbal communication. Maybe he was always unhappy, but he did not want to give me a spinal tap at 2am. Whether to relax the man with the largest needle I’d ever seen or to amuse myself in my delirium, I started calling him Nigel.
Nigel, the character Christopher Guest played in the movie This is Spinal Tap. Because he was about to perform my spinal tap. Nigel did not break a smile or give any indication of having seen the movie. He laid out his tools, with which he was about to extract 3 giant vials of my own spinal fluid. Maybe I'd offended him, should have said "Dr. Nigel." I was terrified and beyond exhausted and alone, for so many hours of 'we still aren't sure what's wrong'. “You aren’t going to paralyze me, are you, Nigel?”
The surgeon barked: “Now you signed the consent forms ...”
Yes, I had. And that response was extremely helpful, Nigel, as you’re about to extract essential fluid from my vertebral column without anesthesia and after a marathon of headache pain I wouldn’t wish on anyone, or you. I had signed the consent forms. No one had offered to kill me, so I wasn’t sure about the idea of his hostile hand slipping a centimeter and poking a hole through my spinal cord.
The thing about this pen-sized needle? Rather than put protective vax-goodness into me, it was going to draw essential brain-and-spine fluid out of me. Three vials of fluid later – which I understood they would never put back – Nigel walked out, without saying a word. Some hours later, a different doctor walked in. “Okay, so. Turns out, you DO have meningitis.”
Up the elevator and into isolation I went. A nurse showed me how to roll my IV into the bathroom. Finally, they could treat my pain. I slept the next 12 hours. And recovered quickly; the doc even let me fly to Flagstaff later that week.
Med-students ask me sometimes, when I mention that LP as a personal example of less-than-empathetic doctoring as a vulnerable patient, “Do you have any long-term sequelae (consequential effects) from the meningitis?” Hm, not that I’m aware of. But one never knew, did one?
In late February 2020, days before I would have boarded my first plane to San Diego-before-Honolulu-before-Narita-before-Kuala-Lumpur, I called United and paid the cancellation fee. (My colleagues Carrie and Ming made the same decision; only Adi made the trip.) “As long as you travel within one year of your original booking – January 5th – you can use the same ticket.”
My ER-doc friends in Hawaii, Wende and Jon said, “You made the right call, we think that's the wise choice. We’ll get you here when it’s safe.”
Earlier this month, the one-year-from-purchase mark came and went. I have not boarded an airplane since March 2, 2020, from San Diego. I did make it that far for my niece Rosie’s 18th birthday party. I recorded my presentation in their house, a few hours closer than the 13 hours’ difference between DC and Kuala Lumpur. I thought I could stay awake into the wee hours for a chance to answer attendees’ questions, but I crashed. Adi said it was received well. Still, my traveler gene is still heartbroken, or scabbed over, today.
The genetic studies indicate that presence of gene DRD4-7R corresponds to personality traits like curiosity, risk-taking, a degree of restlessness. Maybe I should answer my med-students’ question about sequelae, “I might be less willing to take big risks now – not sure." Nigel did pull out gallons of my brain’s bathwater. Or, “I might be more appreciative of the chance to live a little longer, if I can help it.” (I think the IV, and my 12 hours of sleep in isolation, actually replaced that bathwater, before I was even discharged.)
All this is a long road to say how fortunate and grateful I am on 1/31/21. I get to poke around the planet in a time when vaccines are a critical part of our long life-spans in decent health. When inventions like the Internet let us hear and see each other, no matter how many hours of daylight apart. My stereotactic needle biopsy? Thankfully benign.
I live in a country whose leadership could surely have done more during the past year to ease our suffering and protect our health, but whose leadership also just refreshed, and offers palpable hope. This past year has been a far greater challenge for the sake of almost half-a-million American deaths now, the agony of so many more, not to touch or sit with a loved one dying of COVID-19. (My cousin, uncle, niece and nephew - all COVID-positive - are doing as well as possible.) It's been a far greater challenge for those who lost jobs, or with drastically reduced income, the inability to pay for prescriptions, food, getting to and from ‘essential’ work that pays minimum wage. I am one of the most fortunate and grateful, to have a telework option. I’m fortunate and grateful to hold in my brain-pouches the memories of intense pain, from time to time – both physiologically and emotionally.
All my memories – the whole shebang -- are ongoing teachers, and healers.
Just to have lived to this very Sunday, a snowy afternoon. To stop typing to answer the doorbell and find two enterprising boys from my neighborhood, “Um, we have a snowblower, which we could use …” (gesturing vaguely to my few yards of front walk) for only $10.” Every winter prior, I’ve declined the likes of those offers. I could easily shovel today in a matter of minutes, but today they’re getting my $10. What good is saving everything?
Sometimes I save the wrong things. On 3/13/20 I put the empty Salmonella typhi box into my briefcase to bring home. I wished I'd rolled up the quilt my mother made for me. And I would so rather hold that small, ancient, diary page and read my father’s handwriting, “still had the nuts in her mouth.”
Rumi (born in Persia in 1207) said, “Life is a balance between holding on and letting go.”
The little vax box is going into the trash for pickup tomorrow morning. My smallpox scab, that penny in the toilet, 90 days of needles for a bat I did not kill, that same bat's poop, two vaccines for travel that did not happen, they’re all still holding their places in my card-catalog of memories. They let me prattle on like this so I can thank you for making it this far. Cheers to you, and safe journeys, of all kinds.