My Covid Year

Me in March 2020, about two weeks before hell broke loose. Photo taken by Cara-Lee Gevers.

One year ago almost to the hour, I went for a jog ahead of the strict lockdown that was about to begin in South Africa. As I trotted along, I became aware of a sensation that would become all too familiar in the weeks and months to come — that of an invisible strap tightening around my chest. I remember thinking “Funny, I don’t usually get exercise-induced asthma.”

I've written about what followed in an essay included in The Lockdown Collection and on social media. I had contracted what, with hindsight, was judged to be fairly severe Covid-19 pneumonia at a time when there were no narratives, no understanding, little shared knowledge about the disease — and in which no standard response to serious illness applied any longer. No, I could not go see a doctor — it was months before I could drive a car again. For the same reason, I couldn’t get tested (in those early months, public health services flatly refused to test me on the basis that I lived alone and therefore didn’t pose an infection threat — so much for all the chatter about test and trace). The night I needed an ambulance was also the night I could no longer decipher the hieroglyphics on either my cellphone or my landline. This was just the beginning.

I ran a fever for six or seven weeks: the acute stage of the illness, during which my GP tried anxiously to manage me from a distance. Nebulising with powerful steroids quite possibly saved my life. Maybe it was the vibrations from Boychik, my rescue tripod, who purred like a tractor alongside me all through the worst nights. Meanwhile, clients and authors, still sold on the Before narrative, where even severe illness was something done and dusted within a matter of weeks, repeatedly asked when I would be able to pick up the projects I had abandoned. I struggled on with some for a few weeks — with hindsight, I have no idea how I managed this. My overriding emotion was not fear: it was bewilderment. When was I going to be well again? I had taken six weeks to recover from a radical hysterectomy that involved major abdominal surgery and repair, and they had felt like six months. How was it that I couldn’t get over whatever it was that ailed me?

I never got tested: by the time I lost my sense of smell and taste, Covid was a foregone conclusion. The infectious diseases specialist I saw nearly five months down the line made the official diagnosis: post-acute or long-haul Covid.

One year later, and I’m still suffering the effects of long Covid. There are days I feel nearly normal — rare but treasured — and days, in the words of a fellow sufferer, when I feel as if I’ve been hit by a freight train. (To see her, and me, interviewed for Carte Blanche, click here.)

As the pandemic swallowed the launch of my first novel (and the accompanying UK book tour), and as I watched my income dwindle, forced to abandon prized projects and cancel writing commitments, it was hard not to feel self-pity. I had no idea much, much worse was to come. Covid was not done with my family.

Early in December, my sister contracted the beta strain of the virus, just as the second wave got underway in South Africa. Within days, she was in ICU. Within a week, she was on a ventilator. She remained on it (and in a coma) for almost a month. Then came the slooooooow process of weaning her off it (it was by no means a foregone conclusion that this would even be possible) as she fought off one deadly HAI after another. A video clip of her emergence from the Underworld (65 days in ICU, a record for the hospital), with all the staff cheering her on, went viral.

I had been doing fairly well up until she got ill. I had gotten past the breathless stage, the sense of a drill bit in my chest, the constant shivering, icy extremities, the crushing weakness and fatigue, and into what I think of as the third tier of LoCo symptoms: a steady cycle of rashes and blisters, itching (I’d wake myself scratching until I drew blood), the trots, extreme pain at old injury sites (every broken bone and surgical scar rose zombie-like from the grave of my body), and blurred/double vision. But my sense of taste and smell were improving; I could taste coriander and orange again, after eight very boring months of tasting only salt, sugar, chilli and ginger (and smelling nothing — helpful when my lady cat Lily piddled on the seat of my car). My specialist had told me in August 2020 that he thought it would take me about a year to make a full recovery. “March 2021,” I told myself. “Just hold on till then.” I did my breathing exercises and Pilates on my bed, made my own kombucha and ginger brew, ate raw sprouts and swallowed handfuls of Vitamin C. I was making progress. I practiced patience and hoped.

Well. It will come as a surprise to no one to learn that stress makes long Covid worse. That acute stress makes it much worse. That acute prolonged stress (SIXTY-FIVE DAYS worth) makes it much, MUCH worse.

So I’m back to where I was about six months ago. I can drive a car, but it exhausts me, and I creep around the backroads. I can work for a few hours most days, but I never know when a “flat battery” day will occur. These start with me trying to pep-talk just one foot onto the floor and end with me still in bed at 5pm. I ignore the attacks of breathlessness, ascribing them to the panic attacks my body started downloading once my sister was out of danger. (Falling apart before then was not an option.) The itching has been so bad my skin is scarred with scratch-marks. An ophthalmologist has pronounced my tear reservoirs to be permanently damaged. Okay, eye-drops and gels forever, but not the end of the world. Until I discovered that the first month’s supply (I have to use them for the rest of my life) cost R450. (That’s another thing about long Covid: it’s a bloody expensive condition because other possible reasons for symptoms keep having to be excluded, hence lots of tests.)

Why write about this? I use this blog mostly to share tips and ideas on how to be a greener citizen, and how to cope with life’s roadblocks (although when I started, I had things like loadshedding in mind, not a global pandemic that would change everything, most probably forever).

The truth is that the experience of Long Covid is unbelievably lonely. Yet there were first dozens, then hundreds, and now thousands of us, hundreds of thousands worldwide. The second wave will swell our numbers. We’re all still feeling our way. Those who got it early feel especially misunderstood, unheard, brushed aside. Sufferers find the denialism of covidiots particularly insufferable, as we wonder if we will ever get our lives and health back. But there are practical tips; online groups; management techniques, and it’s worth sharing these, and I have good intentions about doing so.

One thing is far more terrible than long Covid, and that’s having someone you love in Covid ICU. Trial by terror and daily two-minute phone call from the hospital: the worst trauma my family has suffered by far. And nothing — NOTHING — can prepare one for this. I did learn, the hard way, what did and didn’t help. My two top rules:
1) DO NOT DO NOT DO NOT PHONE IMMEDIATE FAMILY MEMBERS, or message them asking for news, explanations, reports. Do not communicate in ANY way that requires them to be responsive or to perform the emotional labour of reassuring you. Call a close family friend or more distant relative for information instead. If you have to phone the family, do so only during “business” hours. A phone ringing late at night or early in the morning makes the heart stagger with horror. (It seems extraordinary that this needs spelling out, but one person woke me at 7 on a Sunday morning to ask how my sister was.)

2) Send food.

This is a very short list when I could write a book (and probably will) on the correct etiquette (aka plain commonsense) for life-and-death scenarios — which we will all eventually face. I will keep you posted. In the meantime, this is how I look after the past year. Nothing about any of this is pretty. But being alive, no matter how battered and creaky, is preferable to the alternative, a truth I’ve had my nose well and truly rubbed in.