Of smell and loss: Tweets from a Covid-19 Sickbed

Felicity Callard reflects on 27 days living with the symptoms of Covid-19. 

What follows are tweets written while I was lying sick in bed in London with suspected Covid-19. (Suspected not confirmed, since it’s not currently possible to be tested to confirm this.) I have amalgamated and lightly edited the tweets for readability.

Monday 23 March 2020

I read the New York Times article on loss of smell and Covid-19 this morning – and then realised I couldn’t smell or taste the coffee I was drinking:

Statement from British Rhinological Society and ENT UK: ‘There is already good evidence from South Korea, China and Italy that significant numbers of patients with proven COVID-19 infection have developed anosmia/hyposmia. In Germany it is reported that more than 2 in 3 confirmed cases have anosmia’.

I thought back to the very light cough (and headache and exhaustion) I had last Thursday and Friday (which then disappeared; no other symptoms so far). Do I have Covid-19?

I self-isolated as soon as the light cough emerged. It was so very light I would barely have noticed it if there hadn’t been all the information circulating about Covid-19. #StayAtHomeSaveLives

Sunday 29 March

On Monday, I couldn’t smell my coffee. Since then I’ve been unwell at home. It’s been pretty grim but I’m on the mend. Overwhelming fatigue and weakness (I couldn’t even hold my mobile for a couple of days). Excruciating body (particularly leg) pains. Sleeping 18 hours a day. I had to crawl up and down the stairs to reach the bathroom for a couple of days. Cognitively all over the place. Only slight temperature. No chest pain. I feel lucky it has all been manageable – with my partner’s help – at home.

So many friends and colleagues I know in London strongly suspect they have or have had Covid-19. Are there any good estimates of the likely true number of cases in London?

With apparently so many unwell, and so many caring for those unwell, how many core functions of the university are actually currently operating? In his piece from 25 March on the pausing of REF, James Wilsdon reported that his source at Research England stated that some universities had wanted continuity not pause since preps for 2021 ‘are now so advanced’ it would be more work to repeat than pause. From where I’m lying, exhausted, right now, the notion that anyone could have imagined there could be straightforward ‘continuity’ in relation to anything administratively cumbersome affecting universities in the middle of a pandemic seems … well …

In the sometimes hallucinogenic intensity of the last days of sleep, I’ve been dreaming of future worlds. To those who are ill, to all those who are caring for those who are ill, to all those caring for those who might soon get ill: solidarity and strength.

Monday 30 March

You’re sick. And you’re still sick. But now you’re no longer so weak that you can’t sometimes leave the bedroom, that silent room with the blue outside, far, far away, you’re in this strange painful dance with the one you love who cares for you, who’s cared for you for days.

You put the glass and coffee cup there on the kitchen surface. Then bundle yourself away, trying to stretch 2 metres away from them. You’re in the bathroom already now, hiding out. Don’t touch anything. They enter, stage right. Pour water in the glass for your tired throat. They refill your cup, with coffee you haven’t smelled or tasted for a week. You love that they make coffee for you. They joke how you always want coffee on a drip. The coffee is now cold. You both know it would be better hot. You can taste the heat.

They open the microwave. You watch from the bathroom. They retreat out of the kitchen. You advance. Fetch the cup and put it in the microwave. Back in the bathroom. They return, close the door, heat the coffee, open the microwave door, an invitation. Leave. You walk forward look at the steaming coffee. Fantasise its taste and smell as the cup sits miserable in the ugly microwave. Remember three weeks ago when you made coffee to take with you to the cold picket line. Life has been strange for a long time. Grab the cup. Walk through the kitchen. Pick up the water glass too. They are pushed against the wall in the living room. Keeping distance from you as they must. You pass them. You’re back in the bedroom. No one has touched the wrong thing. The coffee’s been made hot by many hands. None touching. You drink it alone.

Do these apotropaic gestures work? Work to keep the sickness away from them. To carve new lines in your home. To make relations with objects. They’re already a way of life. And they are not sick, yet. If they fall sick you will make them tea. They fell out of love with coffee. You know they are afraid of falling sick. As you were.

In the silent room you drink the coffee they made for you. You dream how you will tend to them, try to make them feel safe. One day, touch will return.

Saturday 4 April

I just caught the faintest smell of the shampoo that has smelled of nothing for days and days. And now I’m undone. In our time of confinement, that smell has been taken as well as touch I have found hard to bear.

My partner stretches out an arm to me each day holding their most intense candles. One makes them cry: it brings back their childhood memories of walking a particular path each summer to the Greek sea. Later, they tell me the candle smells of fig. Don’t get too close to it, they say. (We both still live with the fear of contamination. They still have no Covid-19 symptoms.) Do you smell anything? There is nothing. Someone must have stood in front of me while I wasn’t noticing and peeled away the entirety of my nose.

It’s totally different from any other experience I’ve had of anosmia. With loss of smell from other viruses, I’ve been so aware of the nose’s fleshiness, its discomfort, the sniffles, the weight of it. But with suspected Covid-19, my nose fails to exist. There’s a gap in my body. It’s the suddenness and cleanness and totality of the loss of the nose. A thief came in the night: no warning. I have been inching around my face, trying to find my nose. Yes, taste has significantly diminished. But for me this is a nose story.

Phenomenologically this feels significant and potentially clinically important. If you could carve out the distinctiveness of Covid-19 anosmia, that might eventually slow Covid-19’s spread. But yesterday, at the UK press briefing, Prof Van-Tam announced that loss of smell/taste wouldn’t be added to the Covid-19 case definition (on advice from the government’s expert NERVTAG group).

I’ve been thinking about the phenomenology of anosmia in relation to the work done to parse the complexity of voices/auditory hallucinations by Hearing the Voice and others. See the study Angela Woods led, which we publishedin Lancet Psychiatry. Parsing phenomenology – whether of voices/auditory hallucinations or anosmia – can potentially lead to new theories and findings in relation to aetiology, nosology, as well as case definition and presentation.

But right now, all of this is still stuck under the heading of anecdote.

I’ve merely told a tale of an absent nose that can’t smell the wax that holds the other’s memory of a path to the Greek sea. And a nose tied to a body that has suspected, not confirmed, Covid-19.

But I think that underrates anecdote.

I’m thinking of Holly Pester’s writing on the anecdotal as ‘a complex of “theory in the flesh of practice”’ in Go to Reception and Ask for Sara in Red Felt Tip. I’m thinking of all the medical humanities and history of medicine literature on the place of anecdote in constructions of the case and case-based thinking.

I have a strong hunch (and of course I may well be wrong) that the distinctive phenomenological experiences of anosmia that look as though they can be associated with Covid-19 are really worth attending to. Will the survey in preparation by the Global Consortium for Chemosensory Research to investigate potential association between smell/taste loss & #Covid19 attend carefully to the complex phenomenology of the experiences? I really hope so.*

Because just look at the vividness of these anecdotal descriptions of suspected Covid-19 anosmia, like this one by Jack Holmes:

I would describe it as the scent of synthetic death, like some sort of chemical fire burned through … and left a desiccated forest of nerve endings behind. When some odor would come billowing in, it would only succeed in activating the burnt-out nerves, like wind kicking up ash.

But now my partner’s making coffee. I can hear them in the kitchen. I can’t smell anything. But I’m in another room. Maybe, if I get closer, and tip the cup to my ghost nose, I will, for the second time this morning, be undone.

Tuesday 7 April

Two weeks yesterday Johnson announced the UK lockdown. Two weeks yesterday you taught the last class of term online, and one of us who had gathered on Zoom made a nervous joke about leaving enough time between class and the Johnson briefing to grab a glass of gin. Yesterday morning tears came for the first time, and maybe it was because you no longer feel physically ill and am meant to be back at work and psychic pain can be more easily felt since you’re no longer so physically weak and frightened about getting really ill, getting pneumonia.

Before yesterday you were concentrating so hard on getting through it and dealing first with the square walls of the bedroom and then later with the tasks of quotidian life. But now you look outside at the blue and want to walk outside.

And for the first time you really take in the awful reality of the lock down, since you’re no longer imprisoned by illness. You think back to thinking about psychoanalysis and history, and Freud’s deferred action (Nachträglichkeit) and grief, in that last class, two weeks ago yesterday. When you were already ill but didn’t quite know it.

Two weeks ago yesterday you didn’t know what was happening to those students who couldn’t join online, to their families. You still don’t know, and you still worry.

You look outside at the blue and want to go out but you can’t, because you still might make others sick.

You remember far back to 18 March before the lockdown when you went outside before you got sick and everything already felt too close and too far away, all at the same time. The world changed while you lay in bed and slept right through, 18 hours, that important meeting you didn’t send apologies for because you slept right through, tied to the bed. While you slept, comrades started posting about the deaths of loved ones from Covid-19 in their mutual aid groups, and yesterday a friend spoke of their shock that a friend they’d been joking online with a few days ago is now in an ICU.

Yesterday, almost 2 weeks to the hour after we grabbed gin and Johnson announced the lock down, we heard Johnson is in the ICU. The first thing you felt before anything else was relief that the brutal reality of his illness had been finally acknowledged after days of press office disingenuousness that made you angry, because that illness that you saw in him, and knew, was being denied. And then you read the statement about him ‘work[ing] like mad’ to try to get through this, but it’s not good enough so far – made by an MP in his own party. And a friend said to you: Friends Like That.

You think back to the early morning of 13 Dec 2019 and the UK General Election. You cried when the parliamentary candidate you canvassed for in North East London lost to that same Conservative MP, the Friend Like That. You think back to her talking of her mother who died after years of dealing with racism and fighting for disability benefits that had been removed by the Friend Like That and his Friends Like That. So many who have died of Covid-19 or are very sickwith it are Brown and Black, and you still can’t easily find UK mortality/morbidity data broken down by ethnicity, even as hideous statistics making the Covid-19 effects of enduring and chronic racism crystal clear now pour from the USA.

The news of ‘cases of pneumonia of unknown etiology’ broke at the World Health Organization China Country Office on 31 December, 99 days ago. Just as many were bidding the many pains of 2019 farewell. 2019’s tears mix with 2020’s.

Tuesday 14 April  

Day 27 of suspected, mild Covid-19. Many symptoms are back and there’s a new one too. Some said mild rulers were merciful rulers, but right now it’s hard to feel there’s much grace in SARS-CoV-2.

New symptom: gastric disturbances. Familiar symptoms that returned after a few days’ break: overwhelming fatigue, cough, leg pain. The pain grips the same spots on the quads and calves but this time it’s not making you cry out. The spite’s still there, though with less power.

This time the cough feels different, since the 1st time round (Days 1 and 2) you just watched it, suspicious. At the time, you thought it might be a nervous cough, since you didn’t feel physically ill at that point, but you knew you were definitely nervous. Maybe it’s a nervous cough this second time round too. Maybe it’s actually not a symptom of Covid-19, which now fills the world. To have suspected – not confirmed – Covid-19 in mild form can make you think against yourself, distrust all of it. Makes you hypothesise you have another illness, or that another kind of pain has brought all of this pain, now you’re well enough again to watch your symptoms. With Anna O, Breuer said that even when things were bad, a clear-sighted observer sat in a corner of her brain looking on at the ‘mad business’.

You’ve been used to a doctor giving something you have a name. Now the doctors are elsewhere and some of them are dying, unprotected. Why do you want a name for the symptoms you have?

*****

* At the time of the tweet, the survey had not been released. It is, at the time of writing, now available and open to participants, on the Consortium’s website.

Acknowledgements:

 My thanks, always, to Stan Papoulias.

Felicity Callard is Professor of Social Research and Director of Birkbeck Institute for Social Research (BISR).

One thought on “Of smell and loss: Tweets from a Covid-19 Sickbed”

  1. Thank you so much for sharing your experience with such detail. Uncertainty often creates fear and it is incredibly helpful to lean on each other given the lack of advice and guidance with COVID-19. I also lost my smell and taste, going on 3.5 weeks. When my “mild symptoms” as they say, had lifted, I was actually able to think clearly. The FIRST thing I thought of was, what if I can’t smell the Greek sea (and souvlakia) ever again?! The fact that I landed on your blog and there was a reference to the Greek sea somehow provided a glimmer of hope.

    Back to “mild symptoms,” it seems surreal to call these symptoms “mild” yet here we are even grateful that it didn’t get worse. I’m trying the “smell training” where I spray my perfume on one wrist and place another sent on the other wrist and alternate taking whiffs throughout the day. I have yet to get a faint whiff. Staying hopeful that time will be on my side for this one. Always open to other suggestions.

    Again, thank you and in particular, for this line: “To have suspected – not confirmed – Covid-19 in mild form can make you think against yourself, distrust all of it.”

    Cheers to making it back to the Greek Sea and savoring the saltwater <3

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