You would think, after eight years in a perpetual yo-yo of decline and recovery, that I would know how to write about recovery. I don’t. On this occasion, recovering from top surgery and a knee injury and pandemic-induced inactivity simultaneously, there’s plenty of material. But some of it’s gross, and some of it’s boring. Some of it is a story of anxiety (“Is this healing correctly? Should it look like that?”), and some of it is a story of determination (daily walks getting slowly longer as I test my ability to walk without a cane). Sometimes, it’s staring into a mirror wondering whether I’ve always been this wonky, or whether I need to go back to the osteopath because my spine’s gone twisty again. None of it makes for a tidy narrative or an inspirational story.
Here’s the part that’s a story: three years on the NHS gender clinic waiting list and no sign of a first appointment, so I went private for top surgery, because selling The Butterfly Assassin gave me the money to do it. And that’s narratively significant and tidy, because The Butterfly Assassin is a story about struggling for control over your body and your life, and this was a form of taking back some of that control. It’s also a book I first wrote during the summer of 2014, around the same time I was having my initial gender crisis. These facts are probably not a coincidence.
The rest is messier. The rest is about balancing my squeamishness, my fear of being visibly trans in an increasingly hostile world, and the fact that surgery cost two-thirds of my yearly income with the fact that I needed to feel at home in my own skin, in an urgent way that wasn’t compatible with the absurd NHS waiting lists. The rest is private: my choices, my anxiety, my body. No matter how the media likes to pretend that trans lives must be endlessly subjected to public debate and examination.
The knee injury, though, I can talk about that. I hurt it in October, and since then my walking has been limited to what I can manage with a cane. My reliance on it has gradually reduced — initially I could hardly walk at all — but I was still using the cane when I travelled for surgery, and my inability to lean on it without aggravating my chest afterwards forced me to focus on rehabilitating the knee. There’s a lot of that, when you have hypermobile joints that perpetually injure themselves. Decline and recovery, decline and recovery, a constant process of rebuilding and relearning and reshaping.
So I’ve been going for walks, because they’re the only exercise I can manage. The unseasonably warm spring weather has helped, making it easier to motivate myself to leave the house, although there are still days where I’m tempted to stay in bed all day. But I force myself out. Sometimes, the walks are short: up the park, a quick circuit of the Pokéstops, taking over the gyms again if somebody’s kicked me out, and then home to recover. Sometimes they’re longer, not always intentionally, as I go a street or two beyond my usual circuit and then drawn further afield by curiosity to see what I’ll find.
Two things have made these walks bearable, even at the beginning when they were brief and slow and required frequent rest-breaks. The first is that I’m living in a new area, and so even a circuit of the streets will bring me sights I’ve never seen before, rather than the dreary familiarity of an area where I’ve lived for years. Novelty creates excitement, even when the novelty is just a different block of flats and row of shops. Since I’m due to move again next month (I’ve begun to feel like I will never not be moving house), there won’t be time for this area to become drearily familiar, and instead I have a sense of urgency, like I need to make the most of it while I’m here.
The other is Pokémon Go. I know: it’s 2022, not 2016. But in 2016, downloading Pokémon Go did wonders for my fitness, prompting me to take that extra digression on the way home just to loop in a couple of extra Pokéstops, rather than always taking the shortest route. It helped me build my stamina and strength, something that’s essential to managing my hypermobility. I stopped playing a while back, but last year downloaded it again to try and motivate myself to leave the house more often. It didn’t work very well then — it helped a little, but then I hurt my knee, so I couldn’t go out — but now it’s coming into its own.
Walking slowly, pausing often, and sticking only to familiar routes where I won’t accidentally find myself too far from home are boring limitations on an ordinary walk. But Pokémon Go makes them easier to bear. I walk slowly, so that gives me time to catch the Pokémon I pass. I’ll pause at a gym to reclaim control of it, giving myself a chance to rest and lower my heartrate before I continue. And I’m always looking at a map of the area, so it’s easier to find my way back when I stray off course.
It has become — in a strange kind of way — an accessibility aid. This game, which was not designed for me, and which favours those who can walk significant distances and regularly, is helping me to manage my disabilities and rehabilitate an injury that has plagued me for months. It makes it worth putting my shoes on just to manage a 15-minute walk, because at least that’ll help maintain my streak of visiting Pokéstops. It has, unexpectedly, gamified recovery.
The game has its challenges and problems. The repetitive movements aren’t great for my hands, and staring down at my phone probably isn’t doing great things for my neck either. But my knee is improving. The other day, I managed to walk for ninety minutes, which I haven’t done in months. My mind feels clearer for it, too: an hour each day away from Twitter and the endless news cycle of doom and despair, the rising cost of living and the spread of virulent transphobia and the war in Ukraine and the perpetually growing COVID figures…
It’s frustrating, when people turn out to be right that fresh air and exercise help. Partly because I’m a creature of the indoors at the best of times, and partly because I don’t always have a choice about my ability to experience those things. For months my knee has kept me trapped, unable to walk further than 10 minutes from home in case I can’t get back again, and no matter how much I wanted to go out and exercise, I couldn’t. Anxiety quickly begins to close in when you feel you’ve lost all sense of control over how you manage it.
But now the winter is coming to an end. The days are getting longer, and the air is getting warmer, and I, like the flowers, am slowly coming back to life again. Slowly getting some colour back, and raising my head to the sun. One gentle walk at a time.
I’m beginning to feel hopeful now that when I’m allowed to dance again, once the post-surgery restriction on cardio has been lifted, I might actually be able to. I’m beginning to look forward to choreographing, to having space to dance in a way that I haven’t since the start of the pandemic. Getting my rhythm back. Expressing myself in a way that doesn’t need words. This time, without having to strap myself into a painful, over-tight sports bra before I start.
With every day that passes, as I get stronger and as my chest heals, I begin to feel that little bit more at home in my own skin. And it’s not body positivity per se. My body and I will always have our wars, particularly over its inability to digest anything I might actually want to eat. But it’s body neutrality. It’s recognition of the self. It’s glancing in the mirror and going, “Oh, yeah, that’s me.” Flaws and all. Rather than feeling caught in a trap, caged in by something I don’t have control over and can’t relate to.
The Butterfly Assassin is a book about struggling for control over your body and your life. About wanting autonomy when you’re losing even the ability to function on a day-to-day basis. About trying to find a balance between surrender and stubbornness: when to ask for help, and when to go it alone. In the eight years since I first drafted it, I’ve lived that over and over, through different periods of decline and their subsequent eras of recovery, and I know that recovery will never be ‘final’, but always an ongoing process. That’s what chronic means. It’s never just one injury, one surgery: it’s a dozen small things and all their effects.
Still, I feel hopeful now that when the book comes out, in two months, it’ll be a much stronger version of me who is there to greet it. Not the hermit-like winter me, kept trapped by pain, but the version of me that takes a slightly longer walk every day, and feels my body remembering what it feels like to do what I want it to do.
Maybe I’ve learned to write about recovery after all. Or maybe it’s the kind of thing you relearn every time, the way I relearn how to walk, the way I regain my strength. An endless cycle. A perpetual process of becoming myself, and claiming my own body.
The Butterfly Assassin will be released on the 26th of May. You can pre-order it now.