Back on the Tightrope

Could there be a silver lining to the hearse-black world-covering cloud of COVID-19? Could the fact that more than 10% of infected people go on to develop long term complications unlock vital funds that will finally enable groundbreaking research into chronically debilitating post-viral conditions? Might those of us suffering from them for several decades already see some recognition and relief in our lifetimes after all?
(Please share George Monbiot’s incisive piece on Long Covid and ME in yesterday’s Guardian.)

These are not the questions I was wrestling with from May to September 2020, when I was mostly bedbound and unable to cook for myself. Those questions were “Oh my God how can the onset of winter cold make me so much more disabled?” “How much more groundless pain, crippling dizziness, brain fug and hourly cortisol-flood-triggering can I stand?” and “How can I bear to continue to be such a burden to my nearest and dearest?”

But it’s a new year. Sampson spent five months renovating our family house so we could rent it out to new tenants and we finally have income again. December’s warm weather energy boost came just in time to enable me to manage 2 hours’ Christmas shopping (thanks to wheelchair, ear defenders and sunglasses) and the packing for our second house move since July. Ruby did the bulk of it last time, but she’s now working in Cabo Verde, as an au pair for a Swiss friend we met in Liberia.

We are in a new place. Back in the truck, back by the sea. Surrounded by intoxicatingly fresh air at the Soetwater Environmental Education Centre (where Sampson is hoping to do a fundraising show when lockdown lifts), I am able to think more clearly, see more clearly several things:

1. This is as good as it is going to get. I may never again be able to walk more than a couple of 100m. Even if I have enough spoons to go further, I can’t manage it physically. Due to longterm collagen depletion or so many months bedridden since 2018, my hips and ankles are unstable. My heart demands I stop and rest on the way back and my ‘aeroplane legs’ need to be raised above my head now even on warm days. A short conversation with someone can consume my energy for the day. Often I must choose between that or teaching Zola a half hour French lesson.

2. This is fine. This is more than fine. It’s so much more than I could have hoped for in midwinter when my level of functioning was so poor the effort to write was like attempting Everest. I’ve seen more of the sea this last week than I have this last year, despite living so near to it, because I wasn’t able to cope with even a 1km car journey. Now I’m doing T’ai Chi daily near the shore line, 20 paces from the truck, drinking in the air flowing in off the Antarctic. It’s so pure, it gives you a hit like champagne. I feel my potential to get stronger here more keenly than anywhere since the Kenyan coast in 2018.

Back then, in my M.E. Too blog, I wrote:
Having mild M.E. is like living your life on a tightrope. You advance gingerly through each day, you look ahead constantly, you weigh your every step. One wrong move could take you down. You are forever dodging the curveballs being thrown at you: a virus, a period, a shock. It’s the ultimate balancing act.
Having moderate M.E. is living your life floundering in the safety net, trapped by pain, an infinite struggle to get back on your feet.
Severe M.E. is lying smashed and broken on the floor, forgotten in the shadows below.
The people watching only ever look up and see the tightrope walkers smiling effortlessly under the lights.
It doesn’t look dangerous.

After 6 months mostly horizontal, I’m finally back to 40% upright and at times this feels like heaven. I know I have maybe 8 more weeks of warmth where most days I can operate at my most capable, which currently means maximum 3 hours editing per day, at maximum 30% of the mental acuity and efficiency I once had.

3. Except if I get Covid. As the second wave of the pandemic tsunami sweeps across the country, even here, alone in the truck, perched in the middle of an isolated nature reserve on the southern tip of the continent, it is becoming a matter of not if but when I get taken down by COVID-19. There is no safety net now. As an immunocompromised person, I am more likely to experience life-threatening symptoms, but the prospect of death doesn’t scare me. What scares me is that if I fall to the coronavirus, my long awaited high functioning 2 months will be lost and I may not claw my way back to that level of capacity this entire year.

The double whammy may even render me permanently too disabled to finish my story.

4. All I want to do is write my book before I die.

This is crystal clear to me now. My children are at the latter end of their education and I’m confident they can manage the rest on their own. My husband might well be better off without me. My unreliable energy and fluctuating cognitive capacity have made it impossible for me to continue with an activist role in the climate justice organisation I helped to found in 2019, or even with community food security efforts in 2020. My only remaining task is to finish my testimony, in solidarity with those who are too unwell to express theirs.

In the darkest winter months, when I was almost paralysed by cold, PEM and the relentlessly crushing news cycle, I scribbled out James Joyce’s words and pinned them on the wall above my bed: “Write it, damn you, write it! What else are you good for?”

Stuck above my bed in the truck – additional stickers courtesy Sampson

In 2020 I only managed to write up the rest of Egypt and Sudan. If I can stay operational throughout 2021 I’m optimistic I can complete the final quarter of the story, from Ethiopia to South Africa, as well as assemble the highlights for the book.

But when temperatures start to drop below 20˚C and my scant energy reserves are being wasted on keeping warm instead of writing, it will get harder again. The remedy is to avoid winter, either by flying to my parents in Spain or travelling north in the truck to more tropical climes – lockdowns permitting.

The first option may be reliant on obtaining a Pfizer or Moderna vaccine suitable for the immunocompromised, despite South Africa having access to neither; the second on my brain stem coping with the sustained assault of a minimum 1000km journey. The odds aren’t great on either; but I’m feeling lucky.

5. Compassion and companionship are all that matters in the end.

Since lockdown began last March I have been visited by friends on a handful of occasions. The most precious hour was spent with someone with whom I’ve been communicating online, but only met the week before Christmas. Retha Viviers is the founder of the South African ME/CFS Foundation and has been chronically ill since 2008. We have been keeping each other company on our longhaul journeys since 2017.

This time last year, she was diagnosed with Stage 4 cancer and given only months to live. I want to pay tribute to her spirit of determined hope, the graceful way she has optimistically undergone two courses of chemo that would be brutal on a body not already weakened by more than a decade of ME. Some of her medical bills are being covered by an international crowdfunding effort spearheaded by those who appreciate how hard she has worked for the ME community over the years.

Since I started writing this blog, Retha’s husband has been admitted to hospital with severe Covid and she is currently withstanding the onslaught of the virus alone at home. Please note that I have avoided using the words ‘fight’ or ‘battle’ to describe Retha’s struggle. We both know better. For those of us with energy-impairment, survival is not about resisting, but enduring. Going with the flow, not against the rip. Trying to float and not drown in the buffeting torrent.

Sterkte, my friend. Just breathe, just be.

* * *

If you are able, please support me to finish my story via Patreon.

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3 Responses to Back on the Tightrope

  1. Norma says:

    When the rhythm of the heart becomes hectic,
    Time takes on the strain until it breaks;
    Then all the unattended stress falls in
    On the mind like an endless, increasing weight.

    The light in the mind becomes dim.
    Things you could take in your stride before
    Now become laborsome events of will.

    Weariness invades your spirit.
    Gravity begins falling inside you,
    Dragging down every bone.

    The tide you never valued has gone out.
    And you are marooned on unsure ground.
    Something within you has closed down;
    And you cannot push yourself back to life.

    You have been forced to enter empty time.
    The desire that drove you has relinquished.
    There is nothing else to do now but rest
    And patiently learn to receive the self
    You have forsaken in the race of days.

    At first your thinking will darken
    And sadness take over like listless weather.
    The flow of unwept tears will frighten you.

    You have traveled too fast over false ground;
    Now your soul has come to take you back.

    Take refuge in your senses, open up
    To all the small miracles you rushed through.

    Become inclined to watch the way of rain
    When it falls slow and free.

    Imitate the habit of twilight,
    Taking time to open the well of color
    That fostered the brightness of day.

    Draw alongside the silence of stone
    Until its calmness can claim you.
    Be excessively gentle with yourself.

    Stay clear of those vexed in spirit.
    Learn to linger around someone of ease
    Who feels they have all the time in the world.

    Gradually, you will return to yourself,
    Having learned a new respect for your heart
    And the joy that dwells far within slow time.
    Blessing for One who is exhausted by John O’Donohue
    Sending this to you in the hope you may find it helpful 🤗

  2. Carole Curti says:

    Hi Sam
    Carole here in uk floods and snow , awful weather , the sun really does help your Dad has always said that , just reading your story you are a fighter and have achieved so much I really admire you keep strong and focused sending 😊🙏❤️Xx

  3. Bless you Norma! It is indeed high time for all to ‘Be excessively gentle with yourself’. I can honestly say that after long practice, I am finally living joyfully ‘within slow time’, thanks to the support and constant refueling from my family.

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