My symptoms started on April 1, 2020. In mid-to-late March of 2020, COVID-19 was becoming a real concern [in the US]. The suggestion was that we shouldn’t gather in groups of more than six. Masks were not yet on our radar. Gloves were suggested, and the general consensus was that we shouldn’t touch our faces. People who were living alone and demonstrating flu-like symptoms were to assume they had the virus, stay home, and let the virus run its course.
Health clubs and exercise studios were forced to close on March 20th. I was using the gym and attending exercise classes until that time. Fitness clubs, restaurants, clothing and grocery stores, and hair and nail salons were taking no precautions to speak of, so I could have contracted the virus while enjoying any of those activities. Or not.
My first symptom was a fever. I became suspicious that it was COVID-19, although I knew no one else who was COVID-19-positive . Per the recommended protocol, I self-quarantined. I continued to experience high fevers, loss of appetite, aching joints, and fatigue. I was somehow not fazed by having the virus; I kind of assumed everyone was having it!
I heard that COVID-19 could cause you to lose your senses of smell and taste. I placed [strong-smelling items from around the house] next to my bed and sniffed them every few hours. When I could no longer smell either, I was dead sure it was COVID-19.
My memory of that feverish week alone is spotty. I had no interest in food, high fevers, extreme hot and cold spells, muscle aches, and was mourning the loss of a couple coveted senses. Around Day 7, there was a distinct shift in my condition. A cough emerged. It was a deep, unfamiliar and frightening cough.
On Day 8, I called my primary care physician’s office and spoke with a nurse who had apparently been charged with triaging COVID-19 calls. I told her I had been sick with high fevers, had lost my senses of smell and taste, and was unable to stop coughing. She said it sounded like I was possibly experiencing minor symptoms of the coronavirus. (This was in early April, when so little was known about the progression of the illness.) She recommended I drive to a testing facility 5 or 6 miles from my home, and I told her I did not think I could drive. She recommended a transport service which would pick me up and take me to the nearest testing facility, but the lead time was about 48 hours. The test results would be ready in about five days, she said, but since this was at a time when the number of available COVID-19 tests were unable to meet the high demand, there might be no test at all. I’m pretty sure I said “OK, thanks” and went back to the business of lung wrestling.
The triage nurse must have re-visited her decision. My PCP Dr. Camille Green, called me later that day. I don’t remember the conversation, except the part where she said, “Call an ambulance immediately.” I had established care with Dr. Green only 6 months earlier. If we’re counting miracles, that would be Miracle Number 1.
I remember getting into an ambulance. The medic asked me which hospital I preferred. I had never been to a hospital so I named the first one I could think of. That decision would be Miracle Number 2. (My life came so close to the edge; I’m convinced that if any decision or event [or its timing] were infinitesimally altered, my illness would have had an entirely different outcome.)
I remember sitting on an exam table and coughing violently. I remember a nasal swab followed by confirmation that I tested positive for COVID-19. I was admitted to the hospital with double pneumonia. This was my only hospital admission in 60 years.
The details of the next couple days are foggy, at best. I distinctly remember seeing large geometrical figures in primary colors on the walls and ceiling of the hospital room. I knew I was hallucinating, but I couldn’t make it stop. Shortly after I told my nurse about the dancing triangles, a psychiatrist came to visit. I remember FaceTiming [video chatting] with my sister and telling her the nurses and doctors were trying to commit me to the psych ward and that I intended to call multiple radio stations to report the conspiracy. Several of my friends later showed me my largely incoherent texts apparently aimed at solidifying my conspiracy theory. (Incidentally, I did not call the radio stations about the conspiracy. But afterwards, I did contact Nina Feldman at WHYY, who was exploring the subject of the wide-reaching effects of the coronavirus. She wrote a wonderful piece about my COVID-19 experience and the lingering psychological and neurological after-effects of the coronavirus, which are still coming to light.)
Around the same time I was hallucinating big colorful shapes, I had another hallucination: I was running down the hallway to escape from the hospital, punched a security guard in the face, pivoted to flee in the opposite direction, and fell hard onto the floor. The hallucination was so vivid, I was convinced it had actually happened. I was mortified when I later found the event well-documented in my medical chart.
The following day, after having been in the hospital for four days, I stopped breathing (or close to it). I vaguely remember consenting to some recommended something or other and being frenetically wheeled somewhere (I presume to the ICU [intensive care unit]) on a gurney. I was wearing an oxygen mask. I recall a pretty blonde nurse leaning over me, asking if I have a DNR [do-not-resuscitate order], and me lifting my mask and asking, “Am I going to die?” She sang a not-too-convincing “no-ooooh” and asked me again about the DNR. I said yes, I have a DNR. The last thing I remember before being brought back to a regular hospital room six days later was that I really don’t know what a DNR is.
Of course, I have no idea what happened during my time in the ICU. This was the beginning of the “no visitors” policy, which I can only imagine was agonizing for my sister, Carolyn, who knew there was a very good chance I would die. With the hospital off-limits, my sister set up a war room in her kitchen, diligently tracked every detail of my turns for the better and my turns for the worse, was in constant contact with the ICU nurses and doctors, and kept our friends and family informed of my progress (and lack thereof). Read Carolyn’s perspective here.
My ass was getting kicked by a novel virus about which so little was known. My brother-in-law, Ron, scoured the COVID-19-related literature, medical opinions, random theories, and conjectures. He found that, factoring in my delay in treatment, double pneumonia, hallucinations, collapsed lung, and my six day ride on a ventilator, my chance of survival hovered in the area of 10%.
One of my best friends, Jeanmarie Perrone, MD, is an ER physician. She’s still mad at me for not calling her during my seven-day pre-hospital fever marathon. Nonetheless, she agreed to share her experience: Read her story here.
Amy, my closest friend, lives in Pittsburgh, 300 miles away from my home in Cherry Hill, NJ. She was receiving daily (or more) updates about my condition from my sister. Obviously, she could not communicate with me or with anyone working at the hospital. Read Amy’s perspective here.
Of course, I have no idea what actually happened from just before I was intubated until after I was taken off the ventilator. But here’s what was happening in my world. By way of background, my mother died 2 ½ years before I got sick. My father died when I was very young. While I was on the ventilator, seemingly at the end of my six-day nap, my mother’s face appeared in laser-sharp clarity. My father’s image was farther away, but I could see him and could sense his presence strongly. It was a warm, peaceful encounter. It was as if we were all floating. They simply appeared and gently pushed me away. And then I woke up (well, after a bunch of false starts trying to get off the ventilator). That would be Miracle Number 3.
The first thing I remember after the “ventilator incident” was a doctor entering my room and saying, “You are one lucky lady.” I had no idea then what he meant.
Because of my positive COVID-19 status, I was unable to receive visitors or leave my room for three weeks. And I had already been isolated at home for one week before I even went into the hospital. The isolation makes you feel vulnerable and helpless and scared and lonely. Thank God for nurses’ visits and cell phones. One of the most powerful calls I had while I was still in the hospital was with Dr. Green, my PCP fairy godmother, who literally saved my life. I don’t remember the actual words we shared; I just remember the overwhelming and tearful feeling of safety and gratitude. Dr. Green and I have had several such conversations since that initial call. Read Dr. Green’s perspective here.
Time-wise, my illness manifested on April 1, 2020, and I returned home on April 29th, after almost 3 weeks in the hospital and then a short stint at Powerback Rehab in Voorhees, NJ. Before I left the hospital, all of my breathing issues had thankfully resolved, but I was extremely weak. After I came home, for a week or so, I was able to get up my interior stairs only by climbing on all fours. When I bent down to put leashes on my dogs, I was unable to get up. (My dogs are very short.) With in-home physical therapy, and some in-living room effort, I was slowly able to regain my strength. Within about six weeks of being released from the hospital, I had, for all intents and purposes, “recovered.” That would be Miracle Number 4.
What I expected was an overwhelming feeling of gratitude for having survived, for having been given a “new lease on life.” What I actually experienced was paralyzing fear and palpable anxiety. I felt there was danger everywhere. I was afraid to leave my house. I was afraid to get into my car. The thought of going into a public building was dreadful. I was experiencing depression and loneliness. It suddenly occurred to me what I had just experienced: I had been blind-sided by a novel virus about which very little was known; I had no idea how I had contracted the virus; I had survived by a very narrow margin; and over 68,000 Americans had already succumbed to the virus. I couldn’t wrap my head around how close I was to being 68,001— just another number in the ever-increasing tally.
While I was convalescing, I worked up my strength and courage to the point of walking my dogs around the block. The first time I got in a car was about a month after coming home. I drove with my dogs to a lake which was about 15 minutes away. I forgot “Right Turn on Red” necessarily entailed looking to the left before proceeding, and almost caused an accident two blocks into the drive.
I made it to the lake and walked uneventfully most of the way around the one-mile perimeter. Then I realized that my legs might not have the strength to make it back to the car. I also started feeling light-headed. By the time I got home, I was feeling very dizzy and went upstairs to lie down. Very soon, the walls were spinning about 50 miles an hour. The ceiling was still and the walls were spinning. Within 10 minutes, I was hyperventilating, seeing double, and my left hand went numb. I called 9-1-1 (which I had never done before my Covid illness), convinced I was having a stroke. The medics arrived, quickly diagnosed a panic attack, and generously helped me to calm down and catch my breath.
I think we have all had an anxiety attack at one time or another. Believe me when I tell you that “anxiety attack” and “panic attack” are NOT interchangeable.
About two months after returning home, I went to a doctor’s appointment. I felt perfectly fine that entire day until I began the drive home. It should have been a 15-minute drive, with a total of four turns. A couple minutes into the drive, I became very disoriented. I made turns for no reason and didn’t turn where I should have. It took me over half an hour to get home. There were moments when I literally had no idea where I was.
As of this writing, it has been over 5 months since I was discharged from rehab. Initially, I was fearful, unusually emotional and over-reactive, all of which were not unexpected, given what I had gone through. Although I am fine most of the time, I have also experienced (to varying degrees) difficulty with: focusing, finding words, spelling words, retaining what I am reading, following my train of thought, following your train of thought, finding the correct word and knowing when I’ve found it, and having a thought in my head but not being able to express it at all. I am frequently apologizing for my verbal and mental stumbling and asking my listener for patience while I gather my thoughts and the ability to express the them. “Sorry, COVID brain.”
When I say I have difficulty finding words, I don’t mean it’s a “tip of my tongue” situation. This is more like I stop mid-sentence, unable to convey my thoughts or to continue speaking. About 2 ½ to 3 months post-discharge, I became aware this was happening. I was speaking to a friend on the telephone when I became incapable of saying “envelope” or otherwise describing that sealable thing you might put a piece of paper in. I became flustered and abruptly ended the call. […] I stacked that on top of my fear that I would contract early-onset Alzheimer’s just like my grandfather did. In short order, I was in full-blown panic attack number 2, called 9-1-1 because I thought I was (again) having a stroke and was transported to the ER. Again, I was diagnosed with a panic attack like no other (except, of course, the other one).
All this post-COVID-19 aftermath is frightening on so many levels. What’s really disconcerting is that these symptoms manifested months after my physical recovery, which begs the questions: Will my symptoms get worse? Will they ever fully resolve? Will new after-effects emerge? Are my symptoms even COVID-19-related?
Recently, I was visiting with my dear friend, Rob. We were walking my dogs when I became very dizzy and unsteady. He helped me inside, where I lay on the sofa watching the walls move for the next three-plus hours, and we played “Which movie made this line famous?” until I could stand up. Sure, there are a lot of reasons you might have a dizzy spell or brain fog or a panic attack or suddenly can’t spell. But if you’ve never experienced any of those issues pre-COVID-19, maybe they’re related?
Have you ever heard of telogen effluvium? I wish I hadn’t. It’s a fancy name for this: your life gets turned upside-down when you get as sick as you could possibly get without dying; you wake up to discover that 68,000 people just died from what almost took you out; you learn you could go home to recover but you have to stay quarantined indefinitely (and you live alone and just spent 3 visit-less weeks in a closed hospital room); you begin to recover physically but soon learn that your disease has emotional and neurological components which no one anticipated; you begin a journey of varying degrees of cognitive misfiring and you have no idea when or if it’s going to self-resolve; and then your hair falls out. THAT’s telogen effluvium. [Editor’s note read more about reports of telogen effluvium, or hair loss, in connection with COVID-19.]
I see myself lying in the ICU with a tube in my mouth. My eyes are closed. I am above myself, just watching. I can hear the sound of my own breathing, nothing else. I see that image with stunning, fear-inducing clarity. Is this what an out-of-body experience is? That image (among other things) keeps me from forgetting how close I was to not making it out of the hospital.
I’ve included in my story a glimpse of my illness from the perspectives of my sister, my doctor, and my closest friends. This COVID-19 monster not only ravages its victims, it also wreaks havoc on the people who love them.
As time passes since I became sick, some things get increasingly scarier. Watching the proliferation of positive coronavirus cases and the mushrooming of COVID-19-related deaths keeps my illness so fresh for me. So many people who have not been personally affected by the coronavirus have become shockingly numb to the significance of the death tally displayed next to the face of every anchor on the news. So many people have succumbed to the merciless grasp of this virus; so many lives have been destroyed. My hope is that by sharing my COVID-19 experience, I could help even just one survivor navigate the COVID-19 fallout about which we are all learning in real time. If I could also convince one mask-averse person to cover [their] mouth, even better.
If we join together and meet this monster head-on, behave as if our lives depended on it, and let science and wisdom be our guide, we may just beat it after all. That would be Miracle Number 5.
My Twitter Handle is @canterjacqui.