My Once Smooth And Beautiful Voice Was Turned Into Something Resembling The Lollipop Guild Munchkins Thanks To Long Covid
850+ days after getting COVID, I'm still trying to recapture all I've lost. Meanwhile, the White House just cut $11B in funding for the Long COVID research that could actually help people like me.
Hi, remember me??
I am back to tell you, among other rambling things, that it is finally time to announce the "winners" of our little contest to come get free Sassy and Jane swag and old Prada dresses while helping me clean out my storage unit.
I'm sorry it's taken me a couple of months to announce the results of this, but the timing only now seems exactly right because A, it's nice outside for our day and B, my storage renewal bill is due.
So this is to the Sassy T-shirt wearing gods and goddesses from our last Zoom party: If you still want to come and join me for a day of cleaning, hanging out, eating —I would love to treat you to lunch, of course — while seeing what in my 1990s time capsule in the Bronx is still intact and taking as much of it as you like off of my hands, let me know in the comments that you're still in. I will write you with specifics. If you were not around for that Zoom party and think this sounds strangely appealing, you can say that here too and we will invite as many of you as we can fit into whatever large vehicle we rent.
And now, onto today's much more meaningful piece by Wendy, who is new to me and to AJPT. She simply emailed me (at jane@anotherJanePrattthing.com) with this story and here we are! Feel free to do the same. I’m highly responsive.
And I love you,*
Jane
*Tell me, honestly, does it sound creepy to you when I say that?
By Wendy Button
Sometimes when I feel the loneliness of Long COVID settle in, I’ll call my voicemail to hear what I used to sound like. I don’t use my own phone because I am afraid that I will hit a button and erase it forever. So, I go down to my brother’s room and use his. He leaves it on his bedside table while he goes to his adult day program. But I’ll grab it, call my number, and wait for the beep.
“Hi, this is Wendy. Please leave a message.” Original and thrilling, I know. But my voice sounds smooth, calm, and bright. I’ll call it again. I’ll put it on speaker with the volume on full blast. And then I’ll stop at that point before the whole exercise moves from remembering into self-harm.
I’ll go back upstairs to my own phone and look through the videos to hear myself talk. I’ll scroll back to the days before December 31, 2022 which is when I got Covid for the first time and learned that — in spite of running four miles five times a week, a great diet, vaccines and boosters, and the Generation X strength required to work full-time and be a caregiver then to both my brother (whose brain is different) and a mother with dementia — I was the vulnerable one.
In one video of my mother from March 2022, she sits in a chair by the window in the kitchen wearing a Patagonia jacket and fleece pants, her 24-hours a day / seven days a week outfit.
This was five months before she entered a long-term care facility because she kept falling and 18 months before she died. Her brain autopsy showed that she had Alzheimer’s disease, Normal Pressure Hydrocephalus, Cerebrovascular disease, and trashed frontal lobes — most likely from years of prescription drug addiction.
Most people who have dementia have multiple forms of it, like she did. Recording these videos of our conversations helped with her paranoia because then she could see that I wasn’t making something up about her, such as her having a doctor’s appointment. In this one video, I hear myself say, “Mom, shower tomorrow, right?”
My voice is loud and clear. Like my voicemail. She waves her hand at me saying, “Fine.”
“I tried so hard not to get sick …My brother brought COVID into the house …The day after, it felt like a toddler was racing through my body with a knife.”
Another shows my mother sitting in the car. We’re returning from a doctor’s appointment and listening to my cousin and friend’s podcast. I ask her, “What’s it called?” She stares at me, yanking on a strand of her gray hair. I prompt, “Pod?”
And she answers, “Pod Save America.”
I say, “That’s right.” And I often stop and re-watch the video we made, just as the COVID lockdown began. In it, my mom sits at the kitchen table, demolishing her carton of Mocha Chip Ice Cream. I ask, “What do you want people to do, Mom?”
She answers mid-bite, “Stay home.”
I ask, “Why?”
She says, “So I don’t get sick.”
I tried so hard not to get sick. I rejoiced at the vaccines and took every booster. Because of my role as a caregiver, I wore masks in public places. My neurodivergent brother brought COVID into the house, probably from his day program, and he struggled for a couple of days.
We kept our distance, wore masks, and had air purifiers going, but one night he felt bad and was worried about his oxygen number. He asked, “Can you come in and read it?” I answered, “Yes.” It was fine. He was holding it upside down. The next day, I remained COVID-free and went for a run.
The day after that, however, it felt like a toddler was racing through my body with a knife. When the cough came, one night, I wasn’t sure if I would wake up again. My stomach got destroyed. I felt so weak that carrying a cup and walking upstairs was harder than running up Heartbreak Hill during the Boston Marathon in 2019.
My fever of 101 didn’t break for days. My dreams flipped back and forth between ones with axes chopping off my legs to others where I ran with the members of The Grateful Dead, flocks of ostriches, Newfoundland puppies wrapped in pink and purple boas, and seals wearing tuxedos while “the sky was yellow and the sun was blue.”
When I struggled to get a real breath, urgent care sent me home with inhalers and steroids because they could hear my lungs “trying to inflate fully.” When I landed in the ER with oxygen levels that hit 86 on my home pulse oximeter, they checked me for blood clots, heart attack, and to make sure I hadn’t developed pneumonia.
As someone who had written on several pandemic telethons and vaccine equity events, I knew that millions were struggling with Long COVID. They had to be trying things with people like me in that acute phase of illness.
After the ER cleared me and recommended me to the Long COVID Clinic, I waited to be discharged. Then, I used my raspy voice to text my friend and anchor of Deadline: White House, Nicolle Wallace. She connected me to one of her COVID experts, Dr. Vin Gupta, a pulmonologist and an NBC and MSNBC analyst. Nicolle messaged, “Do everything he says.” And so I did.
“What does [my voice] sound like now? It’s like I was at a bar until closing, shout-singing ‘Sister Christian,’ and sucking back Tequila shots.”
On my 35th day of being sick, Dr. Gupta put me on a 10-day off-label course of Paxlovid, which he had seen help some of his patients. The current protocol is that it is safe to take Paxlovid within five days of testing positive.
On my second day of taking it, it felt like someone had finally taken that knife away from the toddler wreaking havoc on my body. After the final pills, I returned to about 60 percent of my baseline.
At the Long COVID Clinic in Boston, I was diagnosed with Post-Viral Reactive Airway Disease, and I’m now sensitive to pollen, fire smoke, bad air quality days, and even cold winter air. They sent me to various specialists, and it took a year to receive autonomic testing for my weakness, fatigue, and strange heart rate. I had speech therapy after my throat was scoped and showed mild scarring on my vocal cords.
The speech therapist helped me rewire my COVID brain so I could talk and breathe at the same time. After a few sessions of saying, “The hula hoop is in the house” and blowing bubbles with a straw, I could speak again, meaning the mechanics of it all felt normal—but my voice was, and is still, not.
What does it sound like now? Sometimes I describe it as Brenda Vaccaro ate The Lollipop Guild or it’s like I was at a bar until closing, shout-singing “Sister Christian,” and sucking back Tequila shots. Or like it’s my 1-900-number side-hustle voice (since being paid to write these days is tough).
And sometimes when I am on a Zoom call for work, I listen to all the smooth voices speaking … then I weigh in and I feel like the out-of-tune instruments of a fifth-grade band compared to their Rock and Roll Hall of Fame sounds. I look normal until I use my voice. Sometimes when I speak softly and in a loving tone, such as when I talk to my Newfoundland dog or a child, the raspiness fades somewhat.
We passed the 5th Anniversary of the start of the COVID pandemic, and we have gone nowhere fast as a nation – most don’t even know we have March 15th as Long Covid Awareness Day. We have lost more than 1.2 million people, and still counting and still learning what the virus does to our bodies.)
It’s hard to have any kind of hope for cures and treatments right now. The White House ordered the Secretary of Health and Human Services (HHS) to kill the Secretary’s Advisory Committee on Long COVID and ordered the Office of Long Covid and Research and Practices to close.
They turned the Covid.gov website from an information hub into a conspiracy on the virus’s origin. They’ve cut over $11 billion in funding for COVID, along with critical research funding which would improve vaccines and responses, and slashed overall funding to the NIH. Not to mention the HHS Secretary who pushes deadly conspiracies.
829 days after contracting COVID, I can walk at a brisk pace. I will try running again soon. Thanks to the vaccine, I didn’t die. Thanks to that off-label course of Paxlovid, I didn’t develop brain fog or something worse. I lost some hearing, and my ears never stop ringing and humming like a power line.
I now need a lot to function: Albuterol and Budesonide inhalers, Mestinon at 60 mg three times a day, Allegra, 2000mg of NAC, NAD+, Melatonin, and more. But I am lucky. Most of the 23 million Americans who have or have had Long COVID can’t call a friend to get care from an expert or any care. Too many are dismissed, even though 1 in 10 who get Covid will join our ranks.
After I first got COVID and I was well enough to visit my mother again, she gave me some advice I know I need to take. I so wish I had this video on my phone to replay. That day, I walked into her room with my dog and handed my mom a milkshake in her plastic adult sippy cup.
She sat tilted in her wheelchair, trying to read the closed-captioning on the screen coming from something on the news channel. I let her know why my voice sounded weird. She took a big sip of the milkshake. “What do you think, Mom?” I asked, my voice scratchy and strained.
She stared at me. Then, she said, “You’ll get used to it.”
And I try. I try in my Long-COVID loneliness to get used to the new reality. That she and my voice are gone.
I sympathize so much.
I got COVID and RSV at the same time - it didn't mess up my voice (I don't think?) but it did give me asthma and knock me down from "mildly active" to "stops halfway up the stairs."
Fuuuuuck, what a kick in the teeth. And that last paragraph is brutal.