The Paper Haunt: Long Covid gave me a masterclass in corporate and government dysfunction
And I'll never see it the same again.
When I started this essay, I didn’t know if my brain would allow me to finish it. Would it be two weeks, six months, never, that the fog would lift enough to form cohesive text? I wondered, as I kept on typing. The fickleness of my illness–the one whose name is like Voldemort, the one that reminds people of how we failed, of their unprocessed trauma, Oh God, please don’t remind me of that, the one I’ve had to advocate for at my sickest because our leaders won’t–doesn’t give concrete answers.
To live with Long Covid is to live in uncertainty and delay. In lieu of help from our institutions and society, I am left with a few answers that I will detail here. But mostly, I am left with questions.
Will pushing through the fog and pain sink me further past my crumbling baseline?
Will I wake up tomorrow feeling more concussed than I do now?
Will I wake up tomorrow feeling better?
Oh, maybe I am getting better? Was that a sign I’m getting better?
Can I return to work? Will I regress if I do?
Will we make our mortgage this month? Will there be another medical bill in my mailbox today?
How will I afford the treatment the doctor suggested? That doctor I paid with on credit is now nearly maxed-out.
Is the Social Security Administration’s disability application website working again, so I can push through completing it?
Okay, I’m definitely not better. Am I better?
These questions plague me. They plague those, too, who I personally know stuck with Long Covid, us living casualties without financial or medical help. This uncertainty, of when we’ll get better, get recognition, get effective treatment, get policy to help us out of this, is like a body full of lead, heavy and constant.
Then, there is the physical weight of the illness. The pull and fog and spin each Groundhog’s morning. The dread as the medical bills—the ones from the care you sought trying to get better—stack up on the desk in the sunroom in the new house you bought before your relapse back into the abyss. I pass the paper haunt each morning when I take my maltipoo Lila out. Each morning the pile reminds me of all that’s been taken from me and what’s being commanded of me, too.
These are issues that have always been here, not new, I am told. I see how blind I was before.
Most long-haulers are out of work, and therefore unable to financially access healthcare and potential treatment like physical therapy and immunological specialists. Not to say they will cure us, but it could give those a leg-up on their symptoms, making them well enough to be employed. Instead, the ones I know are hanging on by a thread, financially, physically and mentally. We feign the tiniest shred of hope for each other. If nobody else will, we’ve got to do it ourselves. I hear their voices each week as we log onto our virtual Zoom support group. We remind each other to stay in the game, as it is too desolate to look at the reality that are the forgotten, and may not get better, or that without the help we so desperately needed early on like antivirals, it’s too late—we have become permanently ill.
But this essay is not about that, at least partly not. It is about a public that isn’t being served, a system that gets by under the guise of freedom, liberty and justice, yet keeps those who “pay” into it from a dignified living. It is about the corporate loopholes and government dysfunction—the kind I have experienced as a now disabled person in America. And most think it cannot happen to them. I get that. I did, too. These are issues that have always been here, not new, I am told. I see how blind I was before.
It is a sad irony that the thing that makes many disabled also keeps us from fighting for our plight and bettering our circumstances. It keeps us quiet, out of offices and government agency’s lobbies. It confines us to darkened rooms, actually unable to speak and in pain.
It’s what keeps me out of a newsroom, still. The casting away that has been bittersweet, due to the sacrifice I made to get there, giving it all up, going awkwardly back to school in my mid-twenties to pursue it, and a kind of fearlessness that I couldn’t have developed without missing out on it.
I was hired by a national news network in June 2020 at the height of the pandemic, shortly after graduating college. I learned the ropes of producing national news from my living room in Los Angeles. I watched the soundbites I was coding to air show up live from my personal TV. To this day, I’ve never met my colleagues in person. It was odd, but thrilling.
A sign of the utter weirdness of right now, I thought.
I didn’t mind freelancing. It was different than I had expected to start out, but it gave me some flexibility, and I wanted into news in any way I could.
Then, while covering the presidential election in November 2020, I quarantined at a North Carolina hotel not yet knowing I was infected with Covid-19. I tested negative first, then positive for Covid-19 two days later and returned back to my childhood home where I witnessed my Covid-positive father have a violent seizure. Four weeks later after a mild infection, I developed severe neurological symptoms of insomnia, cognitive impairment, tremors, constant vertigo, shortness of breath, and sensitivity to sound and light, to name a few. They were abrupt and terrifying, bizarre and debilitating. I stopped working. My neurologist told me I presented as someone who experience a traumatic brain injury or concussion—except I never took a blow to the head.
Those early months I was in the fight for my life. And I fought. Each day, each minute, each moment, I fought. I made it through, returning to news in June 2021 and wrote an Op-Ed about my experience.
A year later, I experienced a severe relapse from a possible reinfection and have been too sick to work since. My husband and I were closing on our first home at this time. We got into it by the skin of our teeth and, due to my disability, have struggled to make ends meet since. As a “freelance” employee I do not get benefits. I do not get paid time off or sick leave. I later learned, after many painful phone calls during a severe flare, I do not get short-term disability, either. If I become ill, which I did, even as an employee, I am on my own. This is a loophole I’ve learned that many corporations and media networks administer.
I’ve laid in bed days wondering how I would pay bills or continue seeing my doctors. It was weeks after trying to contact human resources that somebody who wasn’t even my HR representative reached out to let me know I had accumulated some sick leave.
Great, it’s something, I thought. It was around two weeks of pay.
Even through the ongoing symptoms and disability, my team gave me the flexibility to work part-time if I needed to. I’ve been heartened by their patience and understanding through these years. They’ve kept me on and offered to welcome me back when I’m ready. Still, there is a job to do. And if I can’t perform it, well…
It is cruel that those who are most affected, and sick, by the disease are forced to shoulder the burden of advocacy.
Freelancers and “gig economy” workers now make up nearly a third of the US workforce. These loopholes that keep corporations from paying out benefits to employees, which, in America, are tied to jobs, is unacceptable.
Long-haulers, and others in the disability community, have had to spend the precious energy they have fighting for help in their disease. It is cruel that those who are most affected, and sick, by the disease are forced to shoulder the burden of advocacy. It’s both admirable and disturbing that we’ve had to lead the charge on recognition. “Long Covid” was named by Elisa Perego, a patient researcher, who started it as a hashtag on Twitter. It is our public health officials who approved the policies that made Americans more susceptible to catching Covid-19; The least they could do is serve the public whose failed policies got many Americans sick.
After I accepted my Long Covid wasn’t disappearing anytime soon, I came to terms with applying for federal disability. The shame, as a 32-year-old woman who graduated at the top of my class only three years prior to having to apply for federal disability aid, cannot be understated. Yet, I was unaware of even more lack of dignity and shame I’d feel as I waded through the Social Security Administration’s dysfunctional disability program the next few months.
I started my disability application online. After spending two hours on the Social Security site filling out a variety of questions, I got to the most intensive part: medical records. My God, there were hundreds. How long would this take?
The nature of Long Covid’s neurological symptoms make the brain’s executive function (attention, short-term memory, organization and planning) impaired. This leaves it challenging to fill out intensely detail-oriented applications. However, I pushed through, slowly trying to remember each portal login username and password, locating three dozen physicians and specialists I’ve seen these two years, and what treatments and meds they prescribed. As meticulously as my brain would allow, I went through hundreds of summary reports, scans, and documents. Eventually, my body said enough. My eyes began to blur. The room spun to the left. The pressure in my head picked up, like corkscrews twisting and throbbing. I stopped just short of completing it. I tried to log in a few times after and was unable to. The site was down.
I thought it was promising when twenty-four hours later, I get a call from an SSA employee to inquiry about the application. For anonymity, I will call him Omar.
“Hi, I’m calling to let you know we received your application, but it’s incomplete,” he said. I pushed through the head pressure and fog to explain how the nature of my disability is what makes it difficult to complete my application all at once, especially when the site is unreliable.
“Yes, it’s been difficult to retrieve all of my health records over the past two years needed to complete it because of the nature of my disability,” I said. “I will log back in to finish it when I have the capacity—hopefully by next week.”
Omar ended the call advising me to reach out if I had any questions. I thanked him. Maybe this process wasn’t so bad? We hung up and I all I could do was stare at the trees in my backyard. The call had dizzied me up and I was feeling the drunk-like, behind-a-glassy-haze fogginess come over as I watched the squirrels scurry from branch to branch.
To this day, now nearly two months after starting the application, I also have not been able to get back into the SSA website to complete it. Since our conversation, I have called back twice. I have not been able to get in touch with Omar.
Still, each month, the mortgage is due.
There is food that needs to be purchased.
There are doctor’s visits and prescriptions that need to be filled.
In learning about the dysfunction of Social Security Disability Insurance (SSDI), I also discovered that no matter the merit of the application, around 65% of applications are denied. The expectation among patients is that attorneys are necessary to have a fighting chance at approval. An applicant’s legal representation, of course, takes their cut, often 20-30% of backpay, if the applicant is approved. Even with an attorney, this bureaucratic process puts disabled people up against the clock. As they wait for the lengthy court process, they are unable to access the financial assistance they are entitled to.
Trying to stay afloat while you are disabled is a job itself. If you do not have the ability to do so, then it does not happen.
Each month the rent is due.
The food needs to be purchased.
There are doctor’s visits and prescriptions to be filled.
We are told that we if pay into the system, the system will support us. Yet, the system—the one in which I did everything I was “supposed to do”—has betrayed me.
I went to college and took out student loans to get an education. I paid my taxes. I volunteered. I worked diligently and honestly. I wore a mask during a pandemic. I contributed to my society and have been deserted by it when I need help. Becoming sick has opened my eyes to the hypocrisies of America, to the way we treat the disenfranchised, the poor and the sick. I used to believe in our high ideals. Our country held so much promise, but sadly, illness has disillusioned me to how it really is.
Those with disabilities deserve better. Our families deserve better. Americans deserve better. Our bureaucratic system is flawed against the weak, the have-nots, the ill. I contemplated it before, abstractly, in lecture halls, but it took me getting sick and relying on it firsthand to understand how broken America truly is. I will never see it the same again.
Morgan, shallow and hollow words, but my heart goes out to you and your husband. You deserve so much more than you're receiving from your employer, from your government. As I continue watching the majority of the world return to "normal", I wonder how many more people will find themselves on the unforgiving end of difficult to access/ limited/ non-existent support. I sincerely hope you can complete your claim successfully and complete this journey with a recovery that allows you to regain control of your life.
Thanks for fighting for us, Morgan.