Life as a Long-Hauler: COVID Leaves Former English Professor at a Loss for Words

Mike Heidenberg

Courtesy of Mike Heidenberg

Long COVID is proving to be a systemic, often debilitating result of a SARS-CoV-2 infection that lingers long after a person's system has cleared the virus. There is no data regarding who is most susceptible to becoming a "long hauler," as members of this group call themselves. The symptoms are as varied as the people who experience them.

This is Mike Heidenberg's story.

“Milk.” Mike Heidenberg could see the word on the empty carton, understand it, and register its context, but he could not communicate the word aloud.

He was trying to tell his wife that he spilled milk on the counter.

“Guitar,” was all the former English professor could say instead.

He knew this was the brain fog talking. This was long COVID talking. And this, he says, is only a snippet of what it can sound like.

Heidenberg’s story starts where many end. On May 14, 2020, he was discharged from the COVID-19 "hot zone" of a White Plains, New York, hospital with antibiotics for pneumonia and a negative COVID-19 test result. The test—which his doctors now believe was either a false negative or taken too late in his course of infection—was supposed to signify a clean bill of health.

It didn’t.

Ever since contracting COVID-19 sometime last April, Heidenberg has struggled with over 40 symptoms—cognitive, neurological, and physical—that have left him completely debilitated. He has seen things he shouldn’t and smelled things others couldn’t. He is plagued by fatigue that renders him immobile on his worst days and barely able to unload a dishwasher on his best days. He has lost his functionality, his mobility, his job, and his livelihood.

Now, he works his way backwards to understand how a virus he wasn’t sure he had managed to mar multiple bodily systems and alter his entire life.

“I call COVID the gift that keeps on taking,” Heidenberg tells Verywell. “And I have no idea what it will take next.” 

An Academic Faces Cognitive Deterioration

Heidenberg, 47, once lived his life in service of words: reading them, writing them, studying them, and then eventually teaching them. After receiving two Master’s degrees in English from Fordham University in New York, he went on to teach, tutor, and advise at different facilities for 18 years. But COVID-19 wiped away the words—and everything he cultivated through them—in less than a few months.

It started with his voice. Shortly after his pneumonia infection, Heidenberg noticed that when he tried to talk, the words latched onto the base of his throat and stayed there. Later, by inserting a scope down his throat, an ENT showed him his vocal cords were snapping shut whenever he used them. This condition was accompanied by oral thrush, which left Heidenberg pulling long white threads out of his mouth for weeks.

“My voice, which I had been using more and more to communicate with students remotely before I got sick, was shot. I could barely speak, and it felt like a woodblock was stuck in my throat,” he says. “It’s gotten much better after six months of speech therapy, but as someone who was always very precise in how I say stuff and who has held other people to that standard as a professor, suddenly not being able to be precise and speak was really, really scary.”

When he can say the words, they don’t always come out correctly, such as when “milk” emerged as “guitar.” This condition is called speech aphasia, and involves an impairment in the area of the brain responsible for speech production. With COVID-19, aphasia tends to happen in patients who were placed on a ventilator or experienced a stroke. However, it’s being increasingly detected in long-haulers like Heidenberg, including those who weren’t hospitalized.

What Is Aphasia?

Aphasia is an impairment of language which occurs when someone suffers from an injury to the frontal lobe, the temporal lobe, or the parietal lobe of the brain.

Experts suggests aphasia stems from multiple factors that trigger neurological damage: prolonged low blood oxygen levels, widespread inflammation, or even direct infiltration from the virus piercing the brain-blood barrier.

“I’ve had so many incidents of aphasia,” Heidenberg says. “On August 18, I tried to come up with the word ‘case,’ but could only think of ‘thing,’ On August 20, I tried to say the word ‘mouthwash,’ but could only come up with ‘washing machine.’ On October 4, I could only come up with the word ‘wine’ when I was trying to come up with the word ‘nuts.’ And there are many, many more.”

Then there’s the brain fog, which comes in waves. This symptom is one of the hallmarks of long COVID, triggering attention deficits, confusion, memory loss, and disorientation in thousands of long-haulers.

Heidenberg says it’s like someone is physically pressing down on his brain, and there’s no way to escape it. 

Neuropsychology tests taken at Mount Sinai hospital in New York reveal that COVID-19 triggered a deficit in his brain’s processing abilities. This manifests itself in almost every aspect of his life.

"My brain just doesn't work properly anymore. This is my most difficult symptoms at this point," he says. "I will lose track of what someone is saying to me in the middle of a conversation. I can usually only talk to my mom on the phone for a few minutes a night—and when I do, I too often go completely blank, either not remembering what I wanted to talk about or just feeling like I can’t process what she’s saying."

Mike Heidenberg

As somebody who has relied on judgment and being able to see what is there no matter what someone else is saying, to suddenly lose my sense of reality is really scary.

— Mike Heidenberg

His thoughts, speech, actions, and reactions are more drawn out. What once could be written in minutes now stretches out for hours. This also restricts him from finding respite in television or books, as his brain gets weighed down by sensory overload.

"There will just be too much light, too many sounds, too many characters, so I get overwhelmed and won’t be able to follow along," he says. "This means I have no escape from what I’ve been going through.”

A Distorted Sense of Reality

In July, three months into his long COVID battle, Heidenberg was jolted from his sleep by the smell of gas. Thinking their White Plains, New York, apartment was catching fire, he quickly woke his wife, Alexis, and raced out of their bedroom to attend to the flames.

But there was no fire. And Alexis could not smell the gas.

That night marked the onset of a new symptom: phantosmia, which is the detection of a random and uninvited smell that is not actually present. Like an olfactory optical illusion, these phantom smells are another example of COVID-19’s extensive neurological effects.

Loss of smell is listed as an official symptom of COVID-19 by the Centers for Disease Control and Prevention (CDC), highlighting the ability of SARS-CoV-2 to affect the nerves in our olfactory system. While phantom smells seem like the opposite, they may stem from the same source. A report published in June found that out of 4,000 COVID-19 patients, 7% were left with a skewed sense of smell.

Every day from June to October, Heidenberg was plagued by this phenomenon. At times, it manifested as faint notes of familiar scents. At other times, it was torrents of repugnant odors. He has caught illusory scents of suntan lotion, cigarettes, bleach, coffee, garlic, onion rings, hash browns, roast chicken, manure, toast, and gasoline mixed with popcorn. They have only now started to diminish in frequency.

Heidenberg’s hallucinations can also materialize in 3D.

“There have been moments where I see things that aren’t there, and that I know aren’t there,” he says, like bugs on his toes or stuffed animal eyes blinking red. “They’ve only occurred a handful of times, but I keep holding my breath hoping they don’t happen again.”

Recent studies indicate that visual hallucinations can occur in COVID-19 and long COVID patients. Some experience full-on psychosis, while others exhibit isolated episodes such as Heidenberg’s.

“It makes me feel like I’m losing my mind,” he says. “As somebody who has relied on judgment and being able to see what is there no matter what someone else is saying, to suddenly lose my sense of reality is really scary. Not being able to understand the senses that you have is one thing—but what’s really scary is not being able to trust what my senses are telling me.”

A Range of Physical Limitations

Compounding the new neurological and cognitive symptoms are the physical ones.

The list is endless and constantly evolving. Vision loss. Migraines. Chest pain. Shortness of breath. Tachycardia. Nausea. Heat intolerance. Blurry vision. Blood pressure spikes. Joint and muscle pain. Fatigue so crippling it feels as if he’s buried below gravel.

“Every day is different. I never know what to expect or what will come next,” Heidenberg says. 

The widespread nature of these symptoms is due, in part, to the vascular nature of COVID-19. The disease travels through the bloodstream and invades every organ. This, coupled with the uncontrolled inflammation set off by the virus, is a potential reason why COVID-19 may induce the extensive post-viral syndrome seen in long-haulers.

“Our circulation is made up of 60,000 miles of blood vessels that bring oxygen and nutrients to every organ in our body. Together, they are known as the vascular system, and the cells that line the vessels are called endothelial cells,” William Li, MD, a physician-scientist in Cambridge, Massachusetts, tells Verywell. “From the research that my group published in the New England Journal of Medicine this spring, we discovered that the [SARS-CoV-2] infects these vascular endothelial cells and damages them. This leads to blood clots seen throughout the body. But even more, the damaged blood vessels can’t do their job properly to keep organs working normally, from the brain to the heart to the kidney—they are all connected by blood vessels. We believe this is one of the underlying issues in long-term COVID: vascular damage caused by the coronavirus.”

Li says that long COVID triggers a host of unusual and sometimes severe symptoms even after a patient tests negative, with more than 100 reported complications. He says there may be multiple pathologies occurring simultaneously, with vascular damage becoming incredibly common.

Long-Haul COVID Doctor Discussion Guide

Get our printable guide for your next doctor's appointment to help you ask the right questions.

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Fighting for Recognition

Heidenberg was let go from his job as an academic advisor at Berkeley College last September, as his problems with memory, speech, and fatigue impeded his ability to work. He says he adored his job and the ability to help students creatively solve their problems.

“As incredibly difficult as this is for my wife and me, I don't blame the college for me losing my job—I blame the virus,” he says.

Exacerbating the financial hit of losing his job was the byzantine unemployment process he was then forced to navigate. After initially receiving benefits at the end of September, he grew concerned that he was filed under the regular unemployment program instead of the pandemic unemployment program. Later, he discovered his benefits would be suspended and there was a chance he would have to pay back what he received. 

Eventually, after months of fear and instability, the issue was rectified. However, if President Biden’s proposed stimulus package does not go through, his benefits will run out again in March.

His attempt to receive short-term disability has been even more frustrating. When he filed an appeal to his insurance company to receive his disability benefits, he was denied by the doctor reviewing the case, claiming there was no objective reason he should not be able to return to work. Like many other long-haulers, Heidenberg’s access to disability benefits hinges on not the fact that he does not a positive test result for COVID-19. This comes in spite of the fact that two doctors from Mount Sinai listed COVID-19 as his primary diagnosis and treated him for post-COVID symptoms. 

“I am truly at a loss about how a pulmonologist whom I've never met or spoken to can conclude that I am fine,” he says. “The unwillingness to go outside of your own specialization is a huge problem for me and long COVID patients in general, and it directly led to me losing my disability benefits.”

He can file a second appeal, but it appears that the lack of a positive test will continue to be cited as a reason to deny his benefits. 

“It’s a really difficult and unusual feeling for me to be the one who needs help because I’m the one who people come to get help," he says. "I just haven’t been able to do that and that’s one of the hardest things for me.”

Heidenberg's medical bills are growing rapidly, and he is struggling to scrape by. Between new appointments, tests, and medications, his days are an endless whirl of different diagnostic and treatment efforts that come at a cost too high for him to pay. His friends set up a GoFundMe to help him out, but the funds have already dried up.

“My biggest fear right now is about what happens if I don't get back to how I was before, or at least close enough so that I can work regularly,” he says. “I'm so, so grateful for the financial help we've been getting from so many people, but I know there are limits to what people can comfortably do for us. What happens when they literally can't help us anymore? What happens when my unemployment eligibility runs out? When I'm no longer eligible for COBRA? Will our savings run out? Will we lose our apartment?”

Through the help of a doctor friend, Peter Staats, MD, Heidenberg has found one thing that temporarily alleviates his symptoms: a non-invasive vagus nerve stimulator. The device, called the gammaCore Sapphire CV, works by sending electrical stimulation through the neck to the vagus nerve, which helps regulate pain signals throughout the body. It can dampen the inflammatory attacks produced by COVID-19.

The gammaCore Sapphire CV device received emergency use authorization from the Food and Drug Administration (FDA) in July 2020.

Heidenberg says it has given him flashes of freedom from his fatigue and increased his energy and attention levels. He says he used it before this interview and it’s the only thing that gave him the energy to share his story. Between this device, speech therapy, medications, supplements, and many, many months of recuperation, he is slowly getting better. But he says the process is not linear.

He still struggles to find the words when he needs them most.

The information in this article is current as of the date listed, which means newer information may be available when you read this. For the most recent updates on COVID-19, visit our coronavirus news page.

7 Sources
Verywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read our editorial process to learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.
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