I might never know what it feels like to live the life of one of my research participants with clozapine-treated schizophrenia. But if I was to try and give you some immediate insight into their worlds as I came to understand them, I would ask you to use your empathetic imagination. As anthropologist Kirin Narayan put to readers of her book Alive in the Writing, the creative process of ethnographic writing can grow from ‘the impulse to find company amid the often isolating and difficult aspects of writing’. In ethnographic writing, we need to somehow re-galvanise our fieldwork experiences that are now in the past. The below passage is how I had initially planned on opening my PhD thesis. I then realised that using a second-person perspective instead of one of my participant’s (I didn’t want to have to choose one or do a compilation of watered down individual voices), was really just me reaching out for mutual understanding — for readers to relate to my participants like I had endeavoured to. Regardless of it becoming an eventual clipping, this experimentation with a second-person perspective helped me to at least begin something. And, we at The Familiar Strange would like to encourage and share more ethnographic writing experimentations on our blog.
Imagine: the relief of undisturbed sleep and feelings of hope, in an aftermath of not having either.
Beforehand, you had become extremely disoriented and were clutching for assurances that you can now see were at least a little bit questionable. Before, you were prone to intense self-scrutiny, with an uncomfortable backdrop of long-buried emotional pains that, in trying to resolve or forget somehow, made you interpersonally absent.
Every relationship grew questionable, until your life suddenly came to a halt. Glimpsing certainty amidst much uncertainty, your energies had gone toward death: To extinguish yourself, or someone else inflicted by a greater force that you felt to be threatening your life. Thankfully, you survived. You’ve known people who didn’t.
You might still experience the presence of others in your mind (extending through your body) that are intrusive or welcome; sometimes both. You might not quite be able to trust anybody. You might still become exceedingly anxious at times. You might not be what society deems as ‘employable’, or feel confident enough to make specific plans.
You find things to do, though, and your life feels comparatively simpler and more composed than you can recall it ever being. You do not know what will happen tomorrow, while yesterday and life before ‘schizophrenia’ might be a haze. But your mind does not race through the day or keep you up at night, and thoughts of death are no longer pressing.
You probably appreciate little things that most people take for granted. Such as what it means to feel focused in the present, on an activity at hand — like reading, playing a game, sipping a cup of tea. Breathing slowly (perhaps aided by a cigarette); and walking along under gentle sunshine.
This quiet respite you’re feeling, however, is medication-assisted. You’re well-acquainted with antipsychotics, but other drugs have not worked for you up until this point – before this ‘wonder drug’, ‘last resort’ antipsychotic called clozapine. You must, though, commit to taking clozapine consistently, and to having regular blood, heart, and other ‘physical’ health checks — to ensure that the side effects of clozapine don’t kill you (in more avoidable ways).
You have likely put on at least 10 kilos within months of starting clozapine. But, all things considered, your relationship with food is primarily one of appreciation for having an appetite at all. There are also other everyday clozapine side effects, which could, depending on how they are experienced and managed, become more consequential — constipation, sedation, drooling, dizziness. There’s a chance you’ll soon be managing Type II diabetes, too.
You now attend a specialised clozapine clinic at least monthly. The clinical caregivers associated with the clozapine clinic may at times be your only human contacts. But you begin to appreciate the predictable forms of communication there, and the clinics become a sufficient place to quietly build up social confidence again.
At worst, the only difference you have noticed since clozapine is being able to sleep and you feel quite inhibited by the treatment regimen. The blood tests and clinical checks are either uncomfortable or cumbersome. You may also feel that clozapine and/or the rapid weight gain has slowed you down too much. Yet, you are told by those whose opinions you care about that you seem ‘better’. And, at least, you have not wound up back in a hospital psychiatric ward, or had to face as many concerns coming from authorities or family.
Life with clozapine
You are holding yourself accountable to the clozapine regimen. You might feel restless, at a kind of impasse as you are working out your options. Even if you do integrate back into wider society by participating in social worlds beyond those implicit in your medical diagnoses, clozapine treatment and attending the clozapine clinic will still be a part of your life.
Yet, there’s now a reliable hope for life that you weren’t able to find before. What’s more, you’ve got an overriding sense of personal power that sees you making your health and your life your own again — no matter how much this life might be shortened in the longer-term sense by chronic health conditions. You are an expert in what it means to live in the present, where the past and future can no longer hurt you.
[Image by Julia Brown]