Recovery as Resistance

A personal story (written with the full permission of Fraser Mycroft)

I hesitated over this post, wondering if it was book material. But the best (non-fiction) books have stories in them, that’s what makes them so engaging. And anyway, isn’t our practice of joy that of channelling fear and sorrow? So it’s authentic, and very raw, hopefully cathartic and definitely rich in public health learning.

Last week, in a rapidly unfolding drama, my son was hospitalised in London with sepsis caused by an abscessed cyst in a delicate place. He responded well to antibiotics, seeing off the sepsis and two days later had surgery to clean out the site of infection. This left him with an open wound deep into his scrotum, which he’s having packed and dressed daily. He will make a full recovery.

The setting for this drama is a busy life in London, studying full-time and also working full-time in a restaurant because that’s the only way he can afford to live there and study at the best University for his subject (SOAS). He’s been staying with friends and with my sister, because nothing else is financially possible. He’s exhausted and the bacteria all around us are nasty, particularly in badly maintained rentals riddled with damp.

He’s also got a genetic predisposition to cysts, which he inherited from me and that’s part of the story.

How did we practice joy during this whirlwind? Firstly, and most importantly, we were intentional about it. That’s not playing the happy game (‘Glad Game’, if you’re old enough to remember Pollyanna). If we’d played the happy game, he might now be very sick indeed, or worse. Everything was not OK. Yet it was hard to see it as an emergency, surrounded as we are with dreadful stories of the state of the NHS: “there’s always somebody worse” was literally true in this case, yet still he needed to find the strength and clarity - in a fever - to make affirmative decisions about his health.

With the glorious benefit of hindsight, he arrived at the emergency room two days later than he would have done, had we been able to rewrite the script. Two days of a growing abscess and creeping blood infection. The first public health learning is that decision-making is difficult in an era of restricted resource. 111 is great in theory, but has limitations as a triage service. Throughout the whole experience, Fraser had to make decisions for himself, even pushing back against medics at one point because he knew his body better than they did (he was right, the abscess that they thought had cleaned itself up ruptured again an hour after the conversation). This takes guts, when you’re alone and scared. And it was joyful practice because it involved a deep knowing of self balanced against respect for clinical expertise. Joy is about navigating life according to an internal ethics; Fraser knew something about his body wasn’t right.

How do we educate ourselves and others to find this balance between self-knowing and professional expertise? Where does that even sit, in any curriculum?

I had a different joyful practice of my own. Fray didn’t want me with him in London and he gently manipulated me by reminding me I had my mum and the cat to take care of here in Yorkshire, and that he had his London family to hand for anything practical (he meant snacks; luckily they knew this). This was hard to understand, but I trusted that he knew what was best for him. He later explained that if I’d been there, it would have been real and he would have had to face the fear of it. He got through it by absorbing the newness of the whole experience almost jokily - first time in hospital, on a drip, going to theatre…emotionally processing the whole thing will take time but we have time. We didn’t need to go there while it was all happening. He was wise.

I needed to draw on the joyful practice community I’ve been part of creating. I needed to ask for help. I needed other people’s stories. I needed calming down (thank you to the dear friend who talked me through my breathing). I needed the habitual practices I’ve folded into my life; I couldn’t focus for long but I could manage a sun salutation, a lighted candle, a few moments’ peace. What I wanted was the illusion of control that sitting by his bedside would have afforded me. What he wanted was to be alone and grumpy and not having to deal with my anxiety as well as his own. He told me later that if I’d have been there, he’d maybe not have pushed back at the doctor who wanted to discharge him (and he’d been home now going through the whole thing again).

That illusion of control is performative. If I’d acceded to that, I’d have got in the way of him coping with it all.

I had no joy of my own to draw on during that dangerous 48 hours. What I had was the constant, unstinting and unconditional energy of the joyful communities I’m part of.

How do we make these communities available to all who need them? Communities of two-way energy, which I think is different from one-way ‘support’? Like a Bank of Joy, where we put in as well as take out.

One unexpected energy was prayer. I have no faith, but people from all faiths and none were praying for us and I literally felt that energy. I started asking for it. I will never be sneery about meaningful ‘thoughts and prayers’ and I’m sorry if I have been in the past. One friend, who belongs to what I think of (maybe wrongly) as an evangelical church, sent text and voice note prayers of such breathtaking directness and precision that they hit me right in the chemicals. I will always be grateful. And grateful, too, to another friend who helped me see prayer as joyful energy. I didn’t need to believe, to draw on the faith of others.

I realise that joyful practice is ‘doing’, but not the mindless ‘doing’ I’d have kept myself busy with if I’d gone down to London. It’s a still and deep ‘doing’, where you have to clear the noise and confront yourself. I’m sitting with this thought a lot at the moment, because I make myself busy to numb out negative emotions.

We made a tricky return to Yorkshire two days after Fray’s operation, knowing that we’d a job to do, to ensure follow up in his primary care. That wound is deep and open, it needs packing and dressing daily, and Fraser’s GP is in Edinburgh where he previously lived (he has no address in London, to be able to register there). In the event, the service we received, even as the weekend approached, was immaculate. No admin barrier was allowed to stand in our way.

But we still needed to make that five hour journey, against the clock, on a Friday. We found the joyful energy we needed in the broader community we’d both built locally, after living in this village for 20+ years. Because I’d broken the back of asking for help, I asked nurse friends for advice. Offers to dress the wound if we didn’t get sorted were unanticipated, but gratefully received. One friend who works for the out of hours community health hub simultaneously navigated both a flight home from holiday and advising us how to get the best out of the service. When I professed thanks, every single person reminded me of small acts of help given to them by either me or Fraser, back in the day. Friendship is not transactional, but the joy of a generous act gets stored in the energy bank.

Two kinds of community - online and local - each playing its part at the right time. That seems like some kind of life balance to me, rather than the work/life we talk about. A pan-organisational professional learning community which has shaded into friendship; a local community fabric built up by years at school and the school gates, local pubs, people my mum knows, neighbours, rugby and Scouts, theatre club, slimming club. That seems to be a prescription for life right there.

How do we raise kids and teach adults to appreciate the contacts we make through life, which serve us in time, as we in turn serve others? We don’t talk about this stuff because we are so used to relying on the twin gods of ‘family’ and ‘state’ (not that these aren’t important, especially family, just not the full picture). We don’t encounter ‘networking’ until adulthood, and then it tends to be focused on career progression in a traditional sense. I’m imagining a world in which we intentionally live our lives to the triple bottom line of people and planet, as well as King Prosperity.

Fraser gave me his blessing to share his story on one condition - that I was clinically honest. He had a cyst in his groin which abscessed into his scrotum, where he now has an open wound 3cm deep. And he picked up a life-threatening sepsis along the way. Every girlfriend he has spoken to has said to him, I’ve had cysts, I’ve had abscesses. And I never told anyone. After a while, they told him about their boyfriends having similar. Each nurse he has encountered had a similar story. Slowly, his male friends have ‘confessed’ the same. I’ve had abscesses on my bum and my vulva of nearly the same severity and dealt with them alone - pain, fear and salt baths. A family member was shocked to tears when Fraser explained to her that we are genetically cysty: “I thought it was only me.” The aftershocks for all of us, recognising that we risked blood infection, risked deep tissue infection - and worse - risked our lives, have been significant.

How do we normalise talking in plain language about the things that embarrass us? ‘Scrotum’ has become the word of the year for us already, it still feels quite awkward to say (to my mum!) and it possibly embarrasses you, but we have to get over it. My teenage nephew asked Fraser if it had happened because he wasn’t clean; my heart ached because he was really asking about his own acned skin. Fraser’s first response was to feel this comment bump up against his own internalised shame; his second was joyful kindness in action.

The truth is that because Fray has grown up around me having abscesses, he didn’t go to the emergency room until it started to push against his balls, and because of my experience, I colluded with that, a delay which might have proved fatal. I’m not wasting any energy in self-recrimination, I’m joyfully channelling any residual guilt into writing this blog.

I have one more reflection to close, but firstly I want to honour the NHS. Fraser saw at first hand how the NHS has been broken (note the syntax: it hasn’t broken itself). There are numerous examples: the advice to get an Uber to A+E so that he could be seen more quickly as a walk-in, the long waits between different procedures, the unbearable amount of time he spent sitting on an open ward in his own blood and pus because there weren’t enough staff, the hour it took a nurse to go round numerous wards to collect up enough dressings for seven days. But still, it did the job and the primary care response in the community has been incredible. Despite him having no GP in England we rocked up at our local surgery late on a Friday afternoon and everything was made possible. “I like a challenge,” said the receptionist. The NHS is down, but it’s not out yet. I probably don’t need to say this, but please don’t vote Conservative next time, even if you normally do.

Finally, Fray’s friend Meg planted a seed in my head, in a voice note to him. “Remember that rest is not recovery,” she said. Much of my FE Constellations work at the moment is about Radical Rest, rest as resistance and politics. Joss and I talk about rest for health and rest for hope. And we need to talk, too, about recovery. We need rest for recovery, we need good food, timely treatment and fresh air. And we need the tools to rebuild ourselves and our communities. We have not recovered from Covid and we need to talk about it. Even more fundamentally, we have not recovered from deliberate policies throughout history which have led to racism, poverty and the marginalising of the many by the few. Enough blaming and self-blaming of individuals. It is time to recover collectively from the histories of the human race.