I am protecting myself, but I don’t feel protected

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Poet and artist Alec Finlay offers a timely reflection on the coronavirus crisis, the invisibility of disabled people and the absence of our voices in the face of what society could learn from our experience if there was less of a drive from the mainstream media to bury its heads in the sand.

line drawing of a man in a rope harness

Alec Finlay: Day of Access, ink on paper, 2019

No-one knew the communities that coronavirus would affect worst, except that, in a way, we all did. We always do: those in poverty, the chronically ill, those individuals and communities that suffer stress caused by mental violence, anxiety, and trauma. As March passed into April the wartime poster mood of “we’re all in this together” morphed into telling graphs and photos of the deceased, many in blue uniforms. Now anyone who watches the news knows that the worst affected are, in broad brushstrokes: older people, especially men, BAME people, those who work on the frontline of care and provision, and, in terms of lockdown, victims of domestic violence.

What struck me over recent weeks is the erasure of the experience of those at high risk, including the disabled, most of whom have been sheltering at home for months. The seeming reassurance of the term “high risk”, which was bandied about in the early stages, is, in reality a confused term, interpreted differently by government, health service, and supermarkets. Many people found themselves outside that circle of care. They have crafted survival plans and depended on the kindness of others. Finding themselves in a corridor of uncertainty, unable to manage as they did, unsafe to go out, finding queues impossible, worried about deliveries, terrified of the risk hospital would expose them to, unrecognised in terms of need. Their experience is summed up in this quote, ‘I am protecting myself, but I don’t feel protected’, from a report published by the Chronic Illness Inclusion Project.

I think especially of those with auto-immune system conditions, like a young woman I know, Catherine, who had to turn away her carers in March. She has been managing a severe condition alone. Catherine is a victim of the crisis, but also a resource as, over years of illness, she’s learnt resilience, using poetry and imagination as ways to imagine the ordinary world outside her door, visualising a walk each day.

It is a difficult truth that not every community can overturn statues. The good and bad versions of anger that flooded out onto the streets in recent days should not blind us to those who remain isolated indoors. If we’re serious about making a new world then we need to learn more than one lesson at a time. We need recuperative forms of imagination.

As the first wave of the virus stretched out its long chain, there were a trickle of stories about people who weren’t going to die but weren’t recovering either. Some were ill for weeks, some have now been ill for months, stuck in a limbo of breathlessness, muscle ache, and fatigue.

A helpful account of long-term coronavirus was published by a professor of infectious diseases and picked up by the national media. At one point the professor sought to distinguish the nature of his own lingering condition from any “kind of post-viral syndrome”. I had to read that phrase over again. Then it sunk in: we’re still playing that game. As if one illness is somehow more real, and therefore more worthy of sympathy, or treatment, or funding, than another? The professor said people ‘need help to understand and cope with the constantly shifting, bizarre symptoms, and their unpredictable course…’ These are experiences that many of his patients with chronic illness could have helped him adjust to, because they’ve lived them for years. I hope the professor recovers and gets back to work, where he may listen to his patients a little differently. What we need now are patient-led models of recovery and resilience, for everyone who experiences long-term impacts.

There are only so many ways in which the human body can be ill and the experience of illness is only new to those who haven’t been seriously ill before. People with the virus talk about an early period of recovery, followed by relapses. Advice seeped out, to lie on your tummy and allow your body to breath and void the toxic phlegm from their lungs. For those caught in a feedback loop beyond the initial virus there has also been a lack of advice.

Speak confidentially to researchers into ME/CFS and they expect thousands of new cases of the disease to emerge in the wake of the virus. People with ME were mostly triggered by a virus, for instance, glandular fever. In an era of auto-immune system illnesses medical science may devise a new post-covid acronym and thousands, perhaps tens of thousands, of lives will be affected. With a grim optimism, researchers hope that this new cohort will finally unlock funding for biomedical research.

Studies suggest that after SARS 40% of survivors experienced symptoms of chronic fatigue and a quarter of cases developed long-term ME/CFS. British clinicians currently expect a third of people who survive coronavirus will experience some degree of post-viral syndrome. This is rarely mentioned in reporting which divides people into the dead and those who recovered. For some people coronavirus isn’t a few days fever, or a couple of weeks with the evil relative of a bad flu. For some the impact will last for months, years, or the rest of their lives. Personally, I know of two first-wavers who caught the virus in that avoidable week before lockdown. They are well into their 3rd month of severe symptoms. Viruses affect people differently. Until we evolve a portrait of any illness by listening to patient witness and studying medical fact there will be no shared vision of recuperation. That vision has to include the chronically ill. It isn’t enough to live in a fantasy where the ‘ying’ of tragic deaths is offset by the ‘yang’ of people coming off respirators. No-one comes off a respirator and walks happily down the road to Lidl. Again, we need as many models of recuperation as Joe Wicks fitness regimes.

The caricature of coronavirus as an illness in which people fulfill their allotted fate by dying, or pluckily recovering, will gradually dissolve. Blue Nightingales are heroic, and inspiring but, for many, recovery will involve rest at home and a process of imaginative adaptation that needs to be supported.

It’s been said that we couldn’t have known what this virus would be like. We could have garnered some idea, if we’d asked those who live with chronic illness. Just as there are now neighbourhood networks of care, so there are bodies of knowledge created by those who live with chronic pain and disability, in particular, so-called invisible illnesses. Their insights would have been a helpful preparation for recuperation from this crisis. People can be given advice on how to adapt to lockdown, sustainable ways to live with constraint, how to best manage limited energy, how to make the best of the possibilities their lives offer, and, in practical terms, how to rest, which is a difficult skill. We still find it hard, as a culture, to listen and learn from illness and the ill.

In terms of the arts, there rightly exist campaigns to increase access to performances while venues are closed, but we also need models of creativity that include the housebound and bedbound. Culture is not always an event, a pleasant two hours at the end of the week. Creativity is a life practice. We can use the imagination to enrich a constrained walk or devise imaginative tweaks to how life is lived at home. And, in terms of disability, art need not always be an identity amplified: it has gentler, quieter modes of attention. As well as clapping, demonstrations, and revolts, we need to create images of recuperation, endurance, nurture, and care. We need to respect the measure of time that the chronically ill experience. Those into their 2nd and 3rd months are tired of being asked, are you not better yet?

Statistics prove the inequality of impact on some communities, but the reporting of those who have pre-existing conditions, always known to be high risk, is negligible. Is this because they are at sheltering at home, behind closed doors, in the grey area between the dead and the well? When the government suddenly announced it was safe for high risk groups to leave their homes many felt incredulity and disdain.

image of a graph with the handwritten words 'economy of energy'

Alec Finlay: Day of Access, ink on paper, 2019

I applaud the Jacobin crowds, as long as protestors innovate in such a way as maintains social distancing so as to express solidarity with other communities at risk. After all, sentence can be passed down on a statue for a future date. It’s hard not to feel that, in addition to grief and indignation, there’s an economy of energy at work, as young radicals respond to injustice and fascists jeer at the shackles of lockdown. The energy or radicalism is unanswerable – you don’t make a revolution from tissue paper – but it’s also unavailable to some. (Still, it wasn’t the radical party who first damaged the solidarity of lockdown, it was a government advisor who fancied taking his wife for a birthday picnic).

What to do then, in a culture filled with a clamour of sectional interests spurred on by anxiety, frustration and inequality, in which the government flounders in armbands? Wonderful local networks that emerged in some communities may adapt into innovative forms of social change. Many people find aspects of lockdown frustrating and upsetting, but also, sometimes, gentle, creative, and inspiring. Who knew this degree of change could happen so quickly and, fragile as it is, with such a sense of consensus? The right to access nature and clean air emerge as basic human rights, which only means that people with asthma were always pointing the way to a better life for everyone, or everything.

It turns out that coronavirus was like any illness, only more so, accentuating weaknesses, revealing latent conditions, respecting strengths, behaving in ways that are sometimes mystifying – happy hypoxia anyone? – at other times cruel. At the start of it all, friends I know with chronic illness, neurological and auto-immune system conditions felt a secret sense of relief, that their experiences may, almost overnight, become validated, better understood, or even researched and treated. Many have felt like bellwethers for years. In terms of prejudice, it wasn’t so long ago that a respected publication like the LRB was peddling myths of post-viral conditions as Yuppie flu. That won’t be possible in the future. In 2010 I had swine flu and its impact for four months which I spent bedbound with symptoms similar to coronavirus. I remember telling my GP about the experience afterwards and him saying to me that isn’t possible. After coronavirus I’m not sure that kind of presumption will wash.

I don’t want to press the case of my own niche identity as someone at risk in a way that competes with any other person’s risk. Vulnerability is not a competition, no matter what the twitterati think. I’m exhausted by the false narratives that sectionalism produces. And yet, in a time when illness itself is the issue, I wonder why, to such an extent, the ill themselves have seemed, well, largely invisible? Distant from the heroism of hospitals there will remain the dailiness of chronic illness and disability, the quiet disasters and noble feats of endurance.

The advice any knowledgeable medical expert would give to help prevent coronavirus descending into ME/CFS is to rest, rest and rest. Do not to push through the fatigue. It is an illness which many people experience as cyclic, with recovery followed by relapse in a pattern familiar to those with invisible illnesses. A culture of recuperation will share the creative aspects of resting, musing and imagining. We need to learn from the experts: the chronically ill.

One of the first things I did during the crisis was to ask my friend Chris Watson for two audio walks I could share online, as a free resource for those in recovery, so they could access nature.

In my own work as an artist poet, I’m reminded that the image is an act of witness and home for complex truths. Poetry can be a comfort, and, at times, the practice of poetry may seek, and even find, healing. During the crisis phrases have stayed with me as found poems: the nurse and writer who said of one patient, ‘he’s not the battle, he’s the battlefield’; the friend from Hong Kong whose idiomatic English reassured me, ‘every catastrophe carries collateral beauty’; or the Bulgarian friend who wrote that he hopes I am as healthy as a cucumber. That gave me a reason to lie a little longer in the sun.

Last year, working on a new book of poems reflecting on illness, pain and creativity, I tried to imagine the kind of revolutionary spirit we’ve witnessed recently, but as if it were coursing through the ill, in a utopian fantasy. I wonder if gentleness could exert itself as a social force? Today, on day 90 with coronavirus, I see that this could only be a fantasy and that troubles me.

The Revolution

then the ill came
in their blankets
raining pills down

on the truncheons
smothering the windows
of the palaces

with wads of
shapeless duvets
forcing forms

under the noses
of the inspectors
then it finally came

the day of the great
demonstration
when every window

was thrown open
and from each one
a blanket was hung

Here is Day of Access – a free online creative tool-kit I gathered together as a response to the crisis. Feel free to share.

Sources
Centre for Welfare Reform report: “I feel forgotten.”– a submission by the Chronic Illness Inclusion Project to the Women and Equalities Committee inquiry into the impact ofcoronavirus(covid-19) on people with protected characteristics.