Long-haul Covid-19 is a new and unfamiliar challenge for patients and providers in our world today. Listen to this pioneering physician tell his story of opening and running a clinic for long-haulers.
Produced by Annie Robinson and Winslow Ferris
Dammit...dammit...dammit! My panic echoed off the chocolate marble vanity, bouncing off its shiny gold fixtures and into a rising pile of lemon-scented suds. It had only been 2 short days since I had convinced my father to reluctantly pay a whopping $80 for a brand-new tuxedo. I wasn’t sure what hurt more now, the fact that I had wasted his hard-earned money or the sharp and familiar stings of humiliation and failure.
The platter-sized stain looked even bigger now in the wall to wall mirrors. Even through my blurry tears, I could see it staring back with scathing judgement. “What the hell were you thinking? A waitress, really? I continued scrubbing through the layers of stubborn marinara sauce, praying that no one from the staff or wedding party would walk in to find a defeated, and disabled teenager experiencing one of the most humiliating moments of her life.
How in the world was I ever going to have a job with this stupid disease? I could still see the look of concern on the guests' faces from earlier that evening. One woman had even declined my offer to pour her tea after noticing my uneasy grip on the pot handle. In concern for her own safety, she insisted on pouring it herself while throwing me a look that clearly stated “Girlfriend, you are not coming near me with that pot of burning hot water”
And she was completely right. I had no business thinking that I could be a waitress. Not with these clumsy hands and hazardous feet. I was a danger to myself and now I was a danger to others.
I wish I could say there was a time in my life when I felt “normal”, but there really isn’t. Some of my first memories include sitting on the number rug in my Kindergarten class and showing off my new plastic leg braces to friends.
I mean, it didn’t really seem to bother me back then. But as the years passed by, my confidence took on more and more hits. I was in 3rd grade now and needed a runner for softball. I was getting tagged out way more than anyone else on the team and my mom had finally decided to talk to my coaches. Easy fly balls were dropping right through my mit...and as much as my poor parents tried to oil, stretch and wear down that leather, it still felt like concrete everytime I put it on.
My most recent dance recital had been more stressful than exciting. I could only stay up on my tippy toes for 2 or 3 seconds now before my ankles gave way and dropped me back to my feet. So at the ripe old age of 8, I hung up my ballet slippers and retired. 2 years later, my cleats and mitt joined them in hopes that one day, I’d find my “thing”.
But despite the regular moments of disappointment, life was still pretty damn good. I had two incredible Puerto Rican parents whose lives and hearts revolved around me and my younger sister, Melissa. Despite not having any family history, Miguel & Eneida had been dealt powerball odds of having, not one, but both of their daughter’s diagnosed with Charcot-Marie-Tooth, also known as CMT, before the age of 4. All they had been told by the doctors was that their daughter’s hands and feet would progressively weaken over time and that there was no treatments or cure. Where many families could have fallen victim to shame, self pity and despair, my incredible parents decided to become overnight advocates.
1987
“I sent your photo to some people the other day” my mom said as she brushed my hair into a tight ponytail. “They want you to be the poster child for Long Island” “Mooommm, what? What does that mean, a poster child? “They want us to take photos at their events and help them raise money for a cure.”
Now, I don’t remember formally agreeing to this poster child thing, but I do remember that soon after that conversation, my family's life was forever changed. Every weekend, between 1987 and 1992, involved us traveling to some kind of fundraising event, sometimes even 2 or 3 in one weekend. And it wasn’t just taking pictures either, we were speaking in front of crowds of people, being interviewed on local news channels, meeting celebrities like Sammy Davis Jr. and Ron Darling. Sometimes we’d even put on impromptu lip-syncing performances at high school dance-a-thons (did I mention this was the 80s?).
They were some of the greatest years of our lives. One of the best parts of it all was the healing it provided for our family. Advocacy had quite literally turned my parents' pain into purpose while also building up my sister and I’s confidence. We were exposed to a world of passionate, generous and caring people. We grew up experiencing the importance of volunteer work, service and community. And we developed a deep sense of humility and gratitude for the challenges we did have because we now personally knew many families whose daily battles dwarfed our own.
But like all good things, they must come to an end. Melissa and I eventually aged out of our poster child status and into tweens with social lives. My parents still ran the local volunteer chapter as well as the annual telethon call center. Mom went back to working full-time and life was just busier.
1992
“Am I really not going to have to wear braces anymore?” I had anxiously asked this same question during every appointment for the past year, terrified of hearing a different answer.“I don’t see why not, kiddo. You’ll have all the support you need after we straighten you out.” Dr. Gruber said in his warm NY accent, reaching into his white coat pocket and pulling out a voice recorder to document his latest observations. He was a well-respected and kind surgeon with a full head of salt and pepper hair who never had less than 3 or 4 med students parading behind him, in and out of every room. He’d poke at my motionless and twisted feet inviting them to take a closer look while he used big words like atrophy and dorsiflexion.
It was early June of 6th grade when both of my leg casts were finally cut off. It had been 12 long and painful weeks of recovery. For the first 6 of those, the rigid white plaster had wrapped all the way up my thighs, stopping only a few inches from where my New Kids on the Block underwear started. This made showering and bathroom time loads of fun. For almost 2 months, my day mainly consisted of being carried from my bed to the bathroom and back to the bed. One weekend, we got hit with a nor'easter. My parents bundled me up as best they could, layering blankets over my legs and open toes before wheeling me outside onto the freshly shoveled walkway. My dad positioned me right up against the base of our snowman, handing me fistfulls of packed snow to slap onto the torso. I laughed as my sister did her ridiculous Christmas Story impression… falling back into the snow and flailing her arms as she attempted to get back up.
By Easter, I was using crutches to get around. It felt good to be vertical again. The air was blooming with new possibilities and it felt energizing to know the most difficult days were now behind me. Dr. Gruber had successfully fused and straightened my floppy, crooked feet into a 90-degree angle just as promised. My new mission that summer was to learn to walk again in time for my first day of Junior High School. I had already begun clipping out back-to-school looks from my Teen Magazines; plaid skirts and grungy floral dresses…you know, the kind that Drew Barrymore and Courtney Love wore— complete with white tees and shiny Doc Martin boots. No more braces meant, I could finally bear my legs without feeling like some kind of freak…I would finally fit in.
1993
The bell rang for home economics class. “Shit” I mumbled under my breath as I scurried faster past the cafeteria. I was going to be late again. The halls were now empty except for a few of the ‘bad kids’ loudly and obnoxiously trailing behind me. They were the school misfits, regularly getting kicked out of class for talking back to teachers and causing chaos… and for some reason this made them even more popular. I had just turned the final corner of the Arts hallway when suddenly I noticed an abrupt and eerie silence. Instinctively, I turned my head... my heart sank. There, no less than 12 feet behind me, was the leader of the pack, Kenny, doing his best impression of my awkward gait, his groupies cupping their mouths laughing breathlessly. I went home in tears that day and told my parents that Dr. Gruber was an asshole and a liar. I needed my leg braces back.
2009
Devin...how are we supposed to get anywhere if you don’t let Mommy buckle you in? By now we were both laughing so hard, that no sound was coming from either one of us. Another 30 seconds of this and we’d both be peeing ourselves, which would have been much more acceptable for a 2 year boy in diapers than his 29 year old mother in yoga pants. We went through this sequence pretty much every time we had to go anywhere. I could rarely get a full grip on his carseat buckle which left me no choice but to assist with my mouth. This easily should have been a 10-second operation except for the fact that Devin was the most ticklish baby I had ever known. The minute my face pressed up against his belly he was squealing and pulling my hair for mercy, which would only send me bursting into laughter and him howling even louder.
Motherhood had found me early in life. I had fallen head over heels with the first guy who had asked me out in HS and we married the summer after my graduation from the Fashion Institute of Technology. Originally, I had set my eyes on becoming a fashion designer but that dream deviated into a bachelors in Interior Design. Sometime during my senior year of high school I had realized that just because my hands were able to draw beautiful runway designs, it didn't mean they’d be able to actually sew them. Still, I had found much enjoyment and challenge in my new major. The campus was small and for the most part, accessible. I was thrilled to learn that my CMT qualified me for campus housing despite the fact I was only a 45-minute train ride from home. I’d finally be able to experience living on my own without having anyone trying to do everything for me.
2016
“You’re Helpless!! I’m out killing myself working 2 jobs and you’re home designing stickers and giving your time away like we’re fucking millionaires.” “Actually, I’m raising our kids, running half the business and the bulk of the household chores, or did you forget those small details? And, I’m volunteering for an organization that’s trying to cure my disease...not that you care to notice anyway!” “Here we go again, how about getting a real job like every other woman I know?!!” “I’ve broken it down a million times, by the time we pay for daycare, there’s not going to be anything left!”
We went back and forth like this for years until it was clear that the marriage was going to be the end of both of us. At 36 it had become blatantly clear that the relationship had done more damage to my mind and body than my actual disease. Piece by jagged piece, we resentfully sorted through 20 years, jumbling together coloring books, bills and family photos from happier days. The forms for my upcoming SS Disability appointment sat on top of the mounting pile. My date had been set for April 17th. I felt both terrified and relieved at the same time.
2019
“I got you, babe. Stay right there, I’ll step on first and help you in, ok?” My boyfriend, Jason carefully postured himself, legs wide as he raised his long arms to form 2 human railings. I grabbed faithfully onto each, dropping down onto the black lacquered cabin as I let out an audible breath of relief. “Good job, birthday girl'' he said as I laughed and straightened out my short green summer dress. I could have fallen headfirst into that water and still, I would have come up smiling ear to ear. My eyes widened as they desperately attempted to take in the overwhelming beauty around us, sporadically bouncing from each intricate carving of the bow and across the sparkling horizon of ancient balustrades, gothic arches and marble balconies. A string of deep red celebratory pompoms danced along each side of the gondola, as we pushed off from the Venetian pier and into the warm June air. “Put your feet up here” Jason motioned, “let’s get some quick shots of your braces in this light.” I raised both legs up onto the wood platform and turned them into the setting sun for optimal framing. They had been sponsored by a German orthotics company, and part of my job, aside from attending our annual neurology conference with my colleagues, was to test and photograph them across our 10-day tour of Italy (I know, tough gig, right?) A few months back, when it was time to select a color from the massive chain of vinyl chips, I had stopped instinctively on this particular one. At first, it appeared as a dull and boring grey until, that is, you held it in direct sunlight, in which case it became an iridescent display of every color at once, brilliantly transforming my legs into some kind of magical rainbow show. I turned to Jay and said teasingly, ‘Aren’t they beautiful? He snapped one more photo and then looked up at me and said, “yes, you are.”
2020
“Low battery” the notification startled me, instantly snapping me back into my now dim bedroom. How long had I been online? The growing sting in my eyes swiftly answered, “too long.” I closed them, rolling my heavy head from side to side until my stiff neck cracked with relief. Dozens of red dots still imprinted in my mind, each representing nearby cities and growing clusters of confirmed cases. “That’s enough for now,” I said, pushing up from the desk and reaching for the cord to my battery pack.
I walked over to the far side of the bed where my headphones still sat from the previous night. The word “Bose” now tinted with dark hues of auburn from the window above. Outside, the yard had been covered in a fresh white blanket of snow, all except for the inground pool whose rigid lines had now been perfectly curved and softened into a small crystal pond. Not exactly the scene I had pictured for the “end of the world.”
I smoothed out the thin purple yoga mat underneath my feet, regaining my balance as I scrolled through my playlist for my go-to track and pressed loop. Spacing each foot along the edges of the mat, I placed my hands down flat, leaning into my palms as they brushed against the tips of my sneakers. All those torturous years of being stretched in PT had paid off. At 39, I was now half human, half pretzel. I’d often credit my abnormal flexibility with keeping my bones intact from my hundreds of falls. One year, I counted 62. Many times I’d laugh them off, saying things like “I don’t break, I bend” to comfort Jay and the kids.
This new storm felt heavier though. This storm was a global one, a Pandemic. I unclenched my jaw and inhaled until each crevice of my lungs were full. The sea of questions and uncertainty began to fade into the tiny bumps of the mat in front of me. My attention now focusing on my tingling fingers and the lavender letters printed above them, “Gaiam”. After years of staring at this odd word, I had only just recently learned it’s greek translation - “I am mother earth.” I exhaled as a tear dropped in between my fingers. My heart felt heavy for what was to come but also grateful for this familiar and sacred space I had found so many years ago. “The melody and lyrics began again...
Hold
Hold on
Hold onto me
‘Cause I’m alittle unsteady
A little unsteady...
More about Estela:
Instagram: @stel_lugo @embraceit_podcast @cmtwegotthis
TEDx: https://www.youtube.com/watch?v=1MXVoLLMzBk
Hereditary Neuropathy Foundation: www.hnf-cure.org
By Pam Saylor
When early retirement unexpectedly became an option in 2016, my husband Dave and I dusted off our long-planned dream trip and made our plans to travel in Europe for a year, beginning in Italy.
Like giddy kids, we bought two one-way tickets to Rome.
Despite the excitement, I almost immediately felt overwhelmed. After all, I had been a Type 1 diabetic for only three years and still had a lot to learn. How would I buy insulin and would it be affordable? Would my prescriptions in English be accepted in European pharmacies? But excitement, anticipation and a bit of courage kept me going.
Pushing worries aside, in the fall of 2017 we left the U.S. hauling four suitcases and one beer cooler full of insulin. My carry-on suitcase was full of stockpiled insulin supplies. I had asked my endocrinologist a thousand questions and made lists of everything I thought I needed to know.
As we traveled things fell into place. I easily filled prescriptions in Rome and Croatia. Of course, there were some problems, like when the Croatian Customs office blocked my Omnipod insulin pumps from being delivered. I reluctantly went back to giving myself multiple daily insulin injections.
After Croatia, we landed in London and I was thrilled to receive a shipment of insulin pumps from my daughter so I could quit the daily injections. Early one morning I attached a Pod to my arm and we headed out for a day of exploring. I checked my blood sugar repeatedly and all day my numbers were perfect. After we returned to our apartment that afternoon I sat on the couch to watch TV and Dave went to the bedroom to read.
When I opened my eyes, the afternoon was gone and there was darkness outside the windows.
I must have been sleeping. Across the room, a pair of shoes was lying in the corner, but they looked wrong somehow—blurry and dim. I blinked. The shoes moved toward me and then away—then closer again before receding. The walls wobbled and looked like they were melting. My brain couldn’t think of the word “shoes.” My head swung to the right and my husband, pale and wide-eyed, was sitting next to me on the couch. His voice shook as he described finding me on the couch—unresponsive but still breathing. Taking a test strip from my purse, he tested my blood sugar. It was only 20.
He knew what to do. Every year we looked at the bright red plastic case holding the emergency glucagon kit after I bought a new one. When he found me unconscious on the couch, Dave knew the glucagon was the only thing that could save me. He filled the syringe and plunged the long needle into my thigh.
We were both silent as we took an Uber to the nearby hospital. I was cold and exhausted. Talking took too much effort. Thinking took too much effort. My arms and legs each weighed 100 pounds.
At the hospital, we eventually saw a doctor. He had questions. From my purse, I pulled out the Personal Diabetes Manager that operated my insulin pump and answered all of his questions. But my hands shook as I searched the PDM. I had questions too.
How did this happen? What did I do wrong?
The doctor meant well but he didn’t have any answers to give me. Like many doctors and nurses, he didn’t understand diabetes very well. We collected a prescription for another emergency glucagon kit and took an Uber home. I lowered my pump settings and nervously went to bed.
When I was finally able to talk to my endocrinologist she told me that I had accidentally given myself an insulin overdose and that I should have reduced my basal insulin settings on the pump for the first 24 hours after re-attaching the pump.
Before we set out on our trip I thought I had asked every question, planned every detail, limited every risk, prepared for every situation. But life isn’t entirely predictable and my best-laid plans and my carefully drafted lists couldn’t always protect me. Life is for living—risks and all.
After my hospital experience, I was thankful. Thankful that Dave was there and knew what to do. Thankful we had not let my worry or fear keep us home. If we hadn’t gone on our year-long dream trip, if we had clung to the safety and security of home, I would have regretted it.
Pam is a retired paralegal and a contented travel addict. She wrote a book about her year of traveling to help others with diabetes who want to travel. Learn more at www.bravingtheworldbook.com.
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A Nurse’s Reflection back to March 2020
This happened at the beginning. Before the tyvek suits, and the extra ICU beds. Before the empty streets howled with what we’ve all lost. When Italy served as an example of what we must not become, when we still had hope we could “flatten the curve.” Before we had all held the hands of the dying in place of their family, before every room was filled with a coughing, proned patient, before we knew what we were doing.
In early March 2020, I was the first nurse to go into a room with a suspected Covid-19 patient. The tests were taking a week to come back at that point, we only had a few suspected patients. Since I didn’t live with family or roommates, I was the safest choice, so I was the first one in. Those first few cases were discharged without results, none of them ended up coming back positive, we were still waiting for our first confirmed case. We knew it was coming, it was only a matter of time before one of them came back positive.
In this in-between time, I met Robert. He had been discharged from our floor less than a month before. He had a significant respiratory history: at home he lived on a constant 8L of oxygen, but it had gotten harder for him to breathe. He lived with his brother who had just attended a funeral, and some attendants had just come back positive. Robert’s brother hadn’t been feeling well, but it was Robert who ended up with us, in a room at the end of the hall, with a steadily climbing oxygen requirement. That first night he was sick, but stable. The next night I came back to find something different. We had never seen it before, but we would see this escalation again and again in the coming months. No amount of oxygen was enough. I was in that room every 10 minutes increasing his oxygen until he was on the maximum amount we could currently offer on the floor.
Robert was very clear: he was a DNR/DNI. There would be no ICU for him, so instead he got me. While I was in his room turning up his oxygen, he told me about his years as a wedding planner, about a bride who had left her dress at the airport, about how he could spot who would make it and who wouldn’t. But when I could turn his oxygen up no further, our conversation switched. Just as he had known which couples would last and which wouldn’t, he knew what his outcome would be. He looked at me and said through his oxygen mask, “It’s okay, I’ve had a good life, I’m ready.”
I had never had this conversation before. I had only been a nurse for a year at this point. On my floor, when someone was imminently dying, they were usually not this aware. But this was a different kind of death. “Will I go tonight?” he asked.
“I don’t know,” I responded. “We’ve never seen this before.”
I don’t know if he saw the tears slowly rolling down my cheeks as I medicated him. If he did, he didn’t say anything. So I sat with him, monitored his medication, and held his hand while he slipped into unconsciousness.
I work the night shift on a medical floor. I start at 7:00pm and end at 7:00am. All of this took place before midnight. I felt like I had already run a marathon. I left Robert’s room while he still breathed but no longer responded, blinded by the bright lights of the hallway. Though we didn’t have his results yet, somehow all the nurses knew: we knew we were seeing something different.
While Robert struggled to breathe at the end of the hall, I turned to face my coworkers and other patients. “John is causing problems,” they told me.
John was another patient of mine. He was on an involuntary psychiatric hold, and completely healthy. He had told the Emergency Department he had a cough, so they swabbed him for Covid and sent him to us. We were woefully ill-equipped to handle psych patients, especially with Covid. We had him confined to his room because he was potentially infectious. He would stand at the doorway, pacing like a caged animal, shouting abuses at the staff who monitored him for safety.
John was desperate for a cigarette. He had been pacing his room for four days, antsy with no entertainment, no freedom, and no cigarettes. I had already been giving more nicotine gum to him than I probably should have, but it wasn’t making a dent. He alternated between screaming at staff and pleading with us. Offering us a mix of abuse and bargains, screams and apologies. My coworkers were right, he was escalating. John was leaning outside his door while the nurses' aides tried to shoo him back inside. We called security, who came up to linger in the hallways, and we called the doctors. It was decided that for everyone's safety we needed to get him sedated. I filled two syringes, one with Haldol, one with Ativan, and with one of my best friends by my side, suited up and walked into John's room. We didn’t know what we were going to get with him, so I very gently said, “John, we have some medication, it is going to calm you down, is that okay?”
Much to my surprise, he responded, “Okay.”
“My friend and I are going to inject you at the same time, one in each arm, okay?”
“Okay.”
Quick and easy, no issue, full cooperation. The doctor left, security left, I took off my protective gown, my gloves, I washed my hands, and as I was walking away, John seized his opportunity. He bolted out of his room like a drunken racehorse at the starting gate. The sedatives had started to kick in, and he wobbled his way down the halls, hooked a sharp left and sprinted haphazardly past the elevators. One of the nurse’s aids and I started after him. He wasn’t allowed to leave, and he was potentially spreading Covid with every surface he crashed into. “John,” we shouted, “please stop, come back!”
But with a determination brewed over days of nicotine withdrawal he continued to rocket down the hallways, past the room in which Robert lay dying, and launched himself into the back stairwell. We were hot on his heels as he plummeted down four flights of stairs and shot out the doorway at the bottom, opening out into the hospital driveway.
He had reached freedom. The cold March air invigorated him and he pressed forward, towards the main street, while the two of us trailed behind him, shouting his name. Security followed us out the door shortly thereafter and we caught up to him just as he was about to run out onto the road. I held his arm in my ungloved hand and he immediately surrendered to his recapture, allowing himself to be steered back to the main door.
As we passed through the doors to the hospital, John looked at me, my hands bare, my face uncovered, and with such genuine remorse said, “I’m sorry.”
It took everything in me not to laugh. The whiplash between my two patients had me reeling. This contrast between intense, frenzied chaos and small, tender moments of sadness would continue throughout the rest of this pandemic for me and my coworkers. This was only the beginning, after all.
After administering a few more sedatives, I tucked John into bed and tried to make it until morning. An hour after my shift ended, before I had even gotten a chance to leave the hospital, John’s test came back negative. He was sent to psychiatry a few hours later. Robert died later that day. He died before his results came back, but he was our official first case. First case and first death, all in one night.
I went home with my best friend and coworker. We had a few early morning drinks and braced ourselves for the months to come, finding moments of joy and hilarity. Who would’ve expected that at the end of our first year as nurses we would find ourselves in the middle of a global pandemic, watching people gasp for life and chasing patients through the halls.
Nell Robinson, RN, works at an urban public hospital in Massachusetts. Since March 2020, she has primarily cared for Covid-19 patients.
Nell Robinson, RN, works at an urban public hospital in Massachusetts. Since March 2020, she has primarily cared for Covid-19 patients.
How has the experience of living through a global pandemic made you feel? How has it affected your life, your work, your relationships, and your state of mind? The National Parks of Emotion is a participatory multidisciplinary art project reflecting on our emotional experiences of the pandemic, led by photographer and community artist Mindy Stricke.
Join the project, share your story, help people share theirs, and learn how to create abstract photographic landscapes of the National Parks of Emotion you’ve been wandering through this past year. Everyone is welcome, including teens and kids with adult supervision. You don’t need to consider yourself an artist to help build the National Parks of Emotions, you just have to be open and willing to play, take chances, and collaborate. http://www.mindystricke.com
How has the experience of living through a global pandemic made you feel? How has it affected your life, your work, your relationships, and your state of mind? The National Parks of Emotion is a participatory multidisciplinary art project reflecting on our emotional experiences of the pandemic since it began, led by photographer and community artist Mindy Stricke.
Come to the next free live National Parks of Emotion Art Lab workshop to join the project, share your story, help people share theirs, and learn how to create abstract photographic landscapes of the National Parks of Emotion you’ve been wandering through this past year. You can also submit your story without participating in the Art Lab through Mindy’s website, or watch the Art Lab recording after the event.
Everyone is welcome, including teens and kids with adult supervision. You don’t need to consider yourself an artist to help build the National Parks of Emotions, you just have to be open and willing to play, take chances, and collaborate.
Register on Eventbrite to receive the Zoom Link.