In Sickness and in Health


‘Sleeping’ by Fabrice Backes,

I hadn’t meant to start my new blog like this. I’m sick. I’ve been sick for three weeks. I I’m in the midst of my latest struggle, which appears to be with overactive mast cells (more here for anyone who likes reading about weird disorders).

My illness looked and still looks nothing like the pretty picture I’ve used as a feature for this page. It was ugly and confronting: a view of my self and my world turned upside-down and hideous.  I’ve spent a lot of the last seven years being unwell. It’s odd, because I consider myself quite a healthy person, both through good luck and good care.

And I can’t continue here without acknowledging that luck in our family feels increasingly like a fragile thing. Our illnesses have left us living from pay check to pay check: we have slipped from comfortable middle-class family status to hanging above the muck of poverty by our toenails. This is what happens to so many families in times of poor health.

So, here we are. Illness is all I’ve got to write about, right now. Perhaps it’s an alright place to begin, because O and I have spent a lot of time in hospitals of late.  I thought we were pretty healthy humans but somehow, in different ways, we’ve both been profoundly unwell, diseased – and ill-of-ease.

I’m not going to write much about O’s current issues, except to say that they’re mental health ones. Even admitting that much about a child who is supported in being transgender raises a lot of conundrums – and a world of judgement from others.  O has always responded badly to stress: he did even as a baby. And anyone who knows anything about health for trans people knows that they suffer disproportionately from mental illness.

O himself regularly comments on his discomfort with regularly entering a hospital, with so many sick children within it, to get the treatment we’re seeking for gender dysphoria. O’s identity is not an illness – but if any medical assistance is required, that’s how we have to phrase it. No treatment will be available without a diagnosis and something to ‘fix’. The assistance he receives from these hospital visits is not really connected to his current problems, but other people make connections and I’m sure O does too, at times.

As for me, it’s amply clear that my autoimmune issue is related to anxiety and stress manifesting itself in physical form. My entire body keeps breaking into inflammation. I know it’s my body’s refusal at a fundamental level to accept its present environment. The question is what I do about it.

I’m aware of Sontag’s classic: Ilness as Metaphor – and that for Sontag illness is not a metaphor – frequently, illness just is. The meaning that can be derived from illness is the meaning that we give to it.

However, I do ascribe some meaning to my various physical complaints. I’ve written a little about what it was first like when I struggled with my sight here (Winking At The World (2012)). The notion of seeing is entangled with humanity’s understanding of what it means to exist, to be. It was inevitable that having low vision rocked my very foundations.

Currently, I’m enjoying being self-focused (another sight metaphor). I like the quietness and simplicity that being ill has brought me. (I suspect this means I’m getting better).

Finally, it occurs that transitions are often marked by being sick: being laid up, withdrawing, spending fallow time. Sometimes it’s necessary to be profoundly out of sync with one’s self and one’s world before integration can happen and balance returns.


I hope that’s the case for O. And for me.