Maverick Citizen

DISPATCHES FROM BED, PART FIVE

It’s time to normalise being Sick in public

It’s time to normalise being Sick in public
From left: Kara Jane. | Anil van der Zee. | Ren. (Photos: Supplied)

Bed, like Lesotho, is a state within a state. Unknown to most of the rest of the world. Hidden away – but not high above, rather below, out of sight. We will remain out of mind unless we draw attention to our situation.

New Year greetings to the citizens of Bed!

(If that seems a bit late, please note that the chronically Sick operate in a different time zone to the Well. We’re only just recovering from Christmas.)

A British-born comedian of my acquaintance used to point out that South Africa is the only country in the world where ‘now’ means ‘later’. For people with ME and Long Covid, by necessity, time becomes even more distended.

Bed Time is like African Time, only more so.

The Sick don’t think in terms of tomorrow or next week, but rather next month. We don’t say “Hope to see you at the weekend” rather “Hope to see you in the summer”. We plan in seasons. Not “Maybe next time” but “Maybe next year”. 

A couple of years ago, during a dangerous decline in my health, I had a light-bulb moment. As I grappled with a terrifying downward slide back to being mostly bedridden, precipitated by the peri-menopause, I finally realised that no one – neither in my family nor in wider society – was going to take my chronic energy-limited needs seriously until I did so myself.

That January, my New Year’s resolution was: Take. Your. Time.

The decision to drop a gear was life-changing. I stopped trying to conform to the expectations of the Well. I started spelling out my body’s needs. I stopped apologising for feeling ill. I started lying down in public spaces whenever I needed to. I withdrew from things that were no longer worth the toll on my dwindling energy reserves, and prioritised nurturing myself. I stopped berating myself for being constantly behind schedule and started congratulating myself for managing to achieve anything at all. 

No one expects chemo patients to keep calm and carry on. No one expects diabetics to just push through regardless, without medication. People with energy-limiting conditions may not have access to mitigating treatments, but we can start treating ourselves with the compassion our struggling bodies deserve. Slowing down is paradoxically the only way to start making progress. Baby steps.

Bed, like Lesotho, is a state within a state. Unknown to most of the rest of the world. Hidden away – but not high above, rather below, out of sight. We will remain out of mind unless we draw attention to our situation. 

Brothers and sisters, it’s time to normalise being Sick in public.

Multitalented Welsh-born, Brighton-based musician, lyricist and rapper/producer Ren looked frighteningly thin in a cameo appearance playing a guitar in Jen Brea’s 2017 movie Unrest about ME/CFS. He spent his teenaged years trapped in his room, unable to digest more than three foods

Ten years later Ren is the poster boy for Sick persistence. His prolific and diverse creative output would be impressive for a Well person, but it’s his post-bedbound lust for life and quest for self-expression that makes his art so compelling. His latest independent hit Hi Ren (five million views in one month) reclaims and centres his Sick Boi identity, making his physical and mental vulnerability fully visible for the first time. An impassioned social media following has helped him crowdfund enough cash to pursue treatment in Canada for chronic Lyme disease.  

Anil van der Zee, a Nederlander of Sri Lankan origin, was an internationally acclaimed ballet dancer who fell ill after a virus in 2007. His ME is so severe, he is unable to tolerate human interaction and lives mostly in the dark, lying in his kitchen, with only his cat Grigor for company. However, he recently recorded this extraordinary ballet from his new reclining wheelchair that shines a spotlight on his existence.

Kara Jane Spencer, a young woman from northern England who had been suffering from severe ME since she was 16, recorded an album in Bed. Her energy capacity was so precarious, she could sing only one line a day. The process took two years and she had to appeal to other musicians to create backing tracks. 

In 2020, Kara Jane announced that proceeds from her album would go to fund post-mortem ME research. On release, It’s Still M.E. briefly eclipsed Taylor Swift’s download sales in the UK, and the BBC reported on her conversation with Dolly Parton. Despite spending more time in hospital than out of it in the following two years, Kara Jane was in the process of recording a second album when she died of ME-induced sepsis on 2 January 2023. She was 32.

Let us dignify these artists’ suffering with due respect for what they have endured to illuminate the shadowed valleys of Bed. Let us pay tribute to the Sick for their sheer commitment to survival. I’ll start:

Salute to the Sick

To all the newly arrived, dazed and confused as to why these Long Covid symptoms just aren’t going away –
To all those being patronised and gaslit by ignorant doctors –
To all those learning to block bodily pain from your mind in order to get through the day –
I see you. 

To all those who drag themselves up for the children, day in, day out –
To all those who push through the working week, only to drop for 48 hours at the end of it –
To all those who can no longer stand up long enough to shop or cook for themselves –
I feel you. 

To the young ones, watching friends go off to start university, to start new jobs, to start families –
To the mid-lifers, watching your livelihoods, your relationships, your identity collapse like buildings in an earthquake –
To the veteran longhaulers, gasping under the rubble, knowing that our struggle to be seen will only benefit the next generation –
I honour you. 

To all those feeling like they’re living life underwater while crawling on their knees –
To those who sacrifice a week of purgatory for an hour with a loved one –
To those too wary to express anger, joy or sorrow for fear that the energy expended on that emotion will fell them for days –
I raise the double-fingered salute: 

To the Invisibilised Ill
To all those with their lives stuck on Pause
To all the soldiers of Bed, abandoned in its trenches

Know we are all warriors, living cheek by jowl with grief
We may be lying down, but we stand together in spirit
We may be alone in our rooms, but we are always side by side

One day, there will be sofas. And respect. Until then,
Let’s 
Take
Our 
Time. 

DM/MC 

Dispatches from Bed is a window into the world of the chronically energy-impaired

Read Part 1: Dispatches from Bed – whose Great Resignation?  

Part 2: Long Covid – it’s better to be broke than have your met…  

Part 3: The Sick are not faking being ill, we’re faking being Well 

Part 4: Do Sick Lives Matter? 

For more information on Long Covid read: Still many unknowns, but long-Covid is real and deserves support for rehabilitation, says expert • Spotlight 

Sam Pearce has orchestrated music festivals, stand-up comedy shows, community-building carnivals, Africa Clockwise adventures and school climate strikes. Although her body now insists she lives in Bed, she’s still striving to be an intercultural activist for social justice.

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