Odd one out

In many ways I’m incredibly lucky. I have a roof over my head, a cupboard full of food, and a number of friends I can exchange messages with on a pretty regular basis.

You’ll note I say “exchange messages with” rather than see. Because, due to experiencing ME/CFS since my collapse in February 2006, I’ve been essentially housebound and socially isolated ever since.

I loved popping out when I could, though, despite my mobility challenges. A weekly/fortnightly trip to the supermarket was a rare opportunity to sort-of socialise, and I even ventured into The Dizzying Metropolis (TM) of London if an event was easy enough to get to (read: limited transport changes, plenty of places to sit en route, and a wheelchair at the end in case my ambition got the better of me).

This all stopped once Covid broke, in March 2020. And it’s been a struggle for me to re-enter the physical world ever since.

Statistically, due to my age, gender, and underlying health condition, I’m at an elevated risk of developing Long Covid and potentially Covid Induced Delayed Injury, which is being connected to numerous sudden deaths and heart-related issues.

And again, I’m one of the lucky ones; I’m shielding because my compromised immune system suggests strong caution. There are millions around the world for whom Covid is a literal matter of life or death.

Just last week I was shocked and saddened to learn of the death of Dr. Mee-Yan Cheung-Judge. A “scholar-educator-practitioner” in the field of Organisation Development, I’ve been basing the last year of my MSc and dissertation on her work around “use of self” while I explore using self-compassion to support ourselves as “instruments” to affect positive change.

I knew that she’d experience cancer over the last few years, and kept wanting to reach out to her to tell her how much I appreciated her work, and how I hoped to bring it into the realm of Positive Psychology; alas, I was waiting until I had something to show her, and now will never have the chance.

Due to my elevated risks I’m still masking (a Flo Mask, in case you’re wondering), a particular form of emotional labour deftly summed up by Nicole Lee Schroeder, PhD on Twitter recently;

At the Positive Psychology Symposium I delivered a workshop at in July - my first in-person workshop since January 2020 - I was only one of two people masking (the other was a lecturer who was flying to see her unwell mother shortly afterwards).

One of my conditions of contribution was that everyone masked if they wanted to attend my workshop, with both my request and my health status was mentioned in the programme.

I was honoured to deliver to a full room of participants (one had to sit on the floor, due to lack of seats) but I had to give an FFP2 mask to all bar two of the 30 who attended.

I was lucky, though. My mask ensured that people knew to socially distance, the venue was spacious and air-conditioned, and I purposefully brought my own lunches and ate them outside, sometimes with brief company. Coffee breaks were spent outside alone, which sucked, though.

It was harder at The Happy Startup School’s Summercamp in September, a three-day event for purpose-driven changemakers and entrepreneurs, which I was generously invited to attend due to my consistent contributions to their amazing community.

It’s not surprising that it was harder, tbh, despite being outdoors. By now, and despite multiple infections, most people heard at the start of the year that “Omicron is milder” and, given that media and government messaging has dropped around cases and precautions, figure that life is ‘back to normal’.

My colourful “Hazmat suit” (a Rainkiss poncho procured by a dear friend from the lovely Jess at Riot Lounge in Hitchen at the last minute!) gave me an additional peace of mind as I risked closer contact with people (including hugs!)

If it wasn’t for this poncho, I would have felt too at-risk to have close contact with a attendee who was experiencing mental health challenges on the first day, and would not have been able to support them as fully as I was able.

(Part of the risk of dressing like a psychedelic High Priestess is that folks reckon you’re able to give them guidance. I mean, I guess that they weren’t wrong?? I was able to be with this person as they moved in and out of what they described as a “spiritual breakthrough or psychotic breakdown”, unable to know which it was, but I was surprisingly unflustered. At the spontaneously-manifested ritual around the campfire that night I was referred to as a “witch” (a white witch, at that) and, before you take umbrage on my behalf, it was entirely meant as a COMPLIMENT.)

But, as two of my friends pointed out on the drive back from Summercamp, I had been playing “third dimensional chess” for the entirety of the event. Every scenario required a constant and rapid calculation of risks, of distance and wind direction, of the actions I would have to take afterwards to “decontaminate” so I could sleep safely (a towel rolled up as a draft excluder and an air purifier were my friends in that respect, too).

Throw in having to self-advocate at meal-times, so that people would realise that I’d taken my mask off to eat, and facing the prospect of dining alone in the cold each evening while everyone else sat together in the relative warm of the main tent .. yeah. This, along with a few other experiences, brought home to me the social model of disability.

(Thank you, Mark, for being my companion on Friday evening, and Claire for taking your volunteer capacity so seriously and joining me on the Saturday night when it was cold enough to see our breaths in the air.)

So, what do I want you to take away from reading all of this? Honestly, it’s to sound a note of caution.

I had my booster jab just over a week ago, and I was one of the few who wore a mask - despite the queue being by its very nature full of vulnerable people.

This winter could be the worst one yet, given the lack of mitigations (community masking, air quality/ventilation, booster uptake); there’s a “soup” of recombined variants that have ever-increasing immune escape (including BQ1.1 which seems to replicate the Norovirus in its acute stage), which early indications suggest also evade the very treatments that immunocompromised people rely on in hospital.

Not to mention the high numbers of people developing a chronic illness not dissimilar to the one that’s shaped my life for the past 16+ years. Yes, my illness has become my spiritual path and, my dear brother in Christ, I would not wish it on my worst enemy.

I get it. We’re all tired of the additional cognitive load that the pandemic has added to other worries around the cost of living/just living. It feels really tough to have reminders that there’s something to exercise caution around. You want to live your life. We only acknowledge the truths that we can bear, and many of us are carrying so much already.

All I ask that you operate from a position of knowledge and compassion. Knowledge that the science is still struggling to keep up with what’s still a developing situation. And compassion for those of us whose load is heavier and constant, as we are forced into self-enforced lockdowns over the coming months because of pre-existing conditions, disabilities, or immune systems that simply don’t respond to vaccination.

Keep yourself safe, and those you love safe. Show you care by wearing a mask, and fit-test it to protect yourself as well as other.

Because if many of us take such actions, the odd ones out won’t just be the ones for whom this is life or death.

Photo by Polina Sirotina