On Not Walking, Part I

In March of this year I found myself unable to walk – a bout of coronavirus in the week before lockdown (UK) turned chronic and hasn’t lifted.

Unable to walk isn’t quite true. I can get to the back garden and lay among the lockdown daisies or take a minor walk to the recycling bins over the road. I want to go around the block, past the fuchsia – the future, we used to joke – and home by the sculpture workshop. That’s a 250-yard dauner. I’ve done it six times and had as many relapses, waking in the night, muscles aching, panting, exhausted. Then a dump-bin of wasted days. That’s what coronavirus does to a vulnerable immune system.

illness is not more or less health –

illness is a new mode of life

I miss my short walks. The desk in my living-room overlooks a path run along an old rail-line to Leith docks. I see people all the time – and their dogs, prams, and bikes. They pass behind the glass, or, on a good day, with the windows held open by a pile of books, I hear their chatter.

the odd walker on the path

with an aura of danger

Starlings nest in the wall. Gulls fly to and from the roof. In the faraway is the bruised torso of the Pentland Hills.

fresh snow picks out

old paths on the hills

The kitchen window looks out over the Firth. Sometimes the sun glints off the caravans, above the beach where I got engaged. Nearer to home, the lighthouse marks my daily walk (as was) and, for months, it’s been a dream to go down Whale Brae and see the boats.

I can see the sea but it’s so long

since I could walk to the harbour

For most of my life illness has made walking difficult. Take a moment to imagine your daily round. Reduce your range to half a mile, clip that to a 150 yards – how is your world now? Does it feel whole? What would you miss most? What could you do to remedy the feelings of loss?

Thousands of people with chronic coronavirus* have lost their walking. In a few days, or a week, their world became strange.

Thousands more people with conditions like M.E. (‘Chronic Fatigue Syndrome’) have lived with constrained walking for years. Their experience of adaptation and knowledge of the imaginative potential of limits is a resource. No-one wants to play the roles illness foists upon them, but chronic pain is a kick up the arse to be creative. To live with chronic illness is to experience yearning, isolation, exhaustion, befuddlement, fragility, and the instinctive desire to be rescued. For remedies, it helps to imagine you’re moss, listen to a field-recording, dream you’re out in a rainstorm with the belling deer on Sgurr na Lapaich, or gently dance beneath a quilt.

if you can walk a half mile

   places connect

if you can walk 100 yards

   then that’s it

The measure of our pace changes our world. The rhythm of our walk sets our clock.

We begin as toddlers, who toddle, and then, after a longish walk, decline into dodderers, who dodder. Our ability to walk should diminish slowly, according to patterns of ageing. But I was suddenly a dodderer at 21. That Summer I was dancing exuberantly to Sister Sledge. By Autumn I could walk a short way, if I had to, and, when I did, the outcome – the lag, as I call it – resulted in days of pain.

the strangeness of illness

                  never lessens

we say we bear an illness

                   it has a weight

the spirit bears its imprint

Lag isn’t the stiffness a hiker feels after a day on the hill. For someone with M.E. or chronic coronavirus the onset of exhaustion is delayed. Relapses extend for days, or weeks. Lactic acid sits on the muscles like beads of mustard the body can’t flush. It feels as if irons are attached to your legs.

lexicon of fatigue (from a Dictionary of Old English)

I’m slepi, weary

fatigat, so wearied

relinxed, and fatigued

afoundred numbed

with exhaustion

and upspent, oh so

   very, very tired

Fatigue isn’t a yawning sleepiness. And don’t call it tiredness. Even if a sufferer says, I feel tired, it’s a lack of language to describe a crash. Imagine a chemical spill flooding joints and muscles with pain.

When people are tired, they can rest. This aggressive, pulsing exhaustion makes rest impossible.

rest? who in their right mind would call it that?

take tired and exceed it by such an extent

that your body fills with fatigue

There’s nothing passive about pain, except your posture. Rest – real rest – only happens when pain is quieted.

I’ve spoken to friends who’ve gone down with chronic coronavirus and read numerous accounts on websites like body politics: people are dumbfounded by the extremity of pain and duration of the lag.

the slack thread’s

a loop of tips,

cures, costs, & losses

Patients who’ve come off ventilators are walking, very slowly, back into a new world. Many will need months of rehabilitation. They’ll have to learn to walk with a body that’s lost its rhythm.

What can I tell them? My fall into M.E. was a classic cliff-edge of post-viral collapse, following a season of glandular fever (mono). Overnight my legs stopped working.

I borrowed a walking stick

   to make a sign

for what was happening

   – no-one saw

First off, the pain bears no relation to how you feel when you’re doing a thing. Swimming might feel great – so floaty, what could go wrong – but watch out for kryptonite later in the week. Detached from its immediate cause, pain is perplexing – like being on the receiving end of an irrational outburst of anger from someone you love.

When M.E. kicked in the pain cycle lasted five days, with the third being the worst. I used to count back and try to guess what event was responsible.

Experiences of collapse are intense. Some stay with you, as wound-shock. One time, after three days ill in bed, I went outside to air myself. The latest relapse had slipped giddily beneath my familiar pattern of symptoms. Function wasn’t so much impaired as disfigured. I lived by The Meadows, in Edinburgh. The park should have been within easy reach. As I went, slowly, around the imaginary touchline of a jackets-for-goals soccer game, the worry came, I may not get home. I’d come 200 metres. I should be in those elastic triangles, with the ball bouncing off me. The disparity between the player’s jouissance and my shuffle was cruel. My shins ached and the tissue in my thighs had turned to junket laced with coal dust. I mustn’t fall.      

After two decades I’d gentled my recovery cycle down to three days, if there was a bath in the house, perhaps two-and-a-half in scorchio sunshine.

Say after me: Hoc est corpus. This is my body. I have no other. Expect little good, accept losses. Re-map your world. Adapt to limits stoically. Keep trying.

Learn who has empathy. Shun those who don’t.

Refuse to feel you are in exile from the parts of the world you can no longer walk to.

Smile wryly at the times you walked too far because you were shy to say, well, actually, I need to stop here, even though your friend or lover thinks the walk has barely begun.

Accept that scale is microcosmic. My beach walks are to and from the sea, not along the strand.

What is possible is tender and magical.

What is the disease? Dementor, figure of self-hate, punishment, curse? No: pain is a vibration of molecules. Illness is relentless, impersonal, and uncaring. There’s no emotionally stunted jellyfish doing the stinging, no matter how sore you feel. Illness is a machine producing complex, destructive relationship – a machine you must learn to live with. Fear comes on whenever you’re drawn back into the mechanism.

This new virus, SARS-CoV-2, sets a cryptic mechanism cascading in a chain of 30,000 'A', 'T', 'G' or 'C' letters, delivering havoc throughout the immune system – leaving some unaffected, mangling other’s lungs, killing some.

 

I can’t breathe

so I blow

in the tube

and she says

my breath is good

 

* 'Chronic covid' or 'long covid' are the most common terms used to define the long term or post-viral version of covid-19, where symptoms persist for weeks or months.

(Read part II of this essay here.)