Week 2: Making Time Through Practices (On Waiting)

Nonlinear Flow Sequence for Patients/Patience Interacting With the Medical Establishment

Find a comfortable position in your bed and become unable to leave it for several days.

Miss your psychiatrist’s appointment.

Lift up through the chest. Swing your feet over the side of the bed, soles flat on the floor.

Remember to call and reschedule the appointment in the three hours the phone lines are open daily on weekdays.
Fail. For some reason, always remember on weekends instead.
*Repeat for a month

Run out of meds.

Shit.

Inhale. Ok, now really try to remember. Exhale.

Stretch through the tips of your fingers. Make notes and everything.

Notice the notes every day exactly two hours after the phone lines have closed.

Fold the fingers of both hands into fists.
Make bigger, more insistent notes in red ink.

Leave them in conspicuous places.

Inhale. Ok that worked!

Exhale.

The line is busy.
The line is busy.

The line is busy.

The line is busy.
The line is busy.

If you don’t get through now you will forget again tomorrow.

The line is busy.
Inhale. Forget to exhale.

Give up. Slip back into Forget Again Tomorrow.

*Repeat until one day, you eventually get through.

Inhale. Your next appointment is five weeks from now. Exhale.

*Repeat entire sequence from the beginning.

There are two free diagnostic clinics in the city who will accept my health insurance.
The first replies: Our waiting list is too long, we are not adding anyone at this time. Please keep checking the website which will be updated when we’re open again for taking new patients.

The waiting list does not open again for taking new patients.
The second replies: Our current waitlist is three years. Please don’t write us again.

Ok, ok.

My psychiatrist, who I have seen four times and only writes prescriptions and sends me on my way again, recommends a private specialist (maybe I can swing one initial appointment?). The specialist has exactly one hour per week open for new patients to make an appointment by phone. I think this must be some kind of bizarre diagnostic assessment for a specialist whose patients supposedly suffer from executive dysfunction and ‘time blindness’, but ok.

Ok. I’m desperate.

I repeat the above sequence for a year. Nobody picks up the phone and my voicemails and emails go unanswered.

I write an advocate’s group in my hometown in Canada asking for advice.
They reply: It will cost between $2000-5000 for a Canadian diagnostic assessment and any eventual diagnosis will only be recognized in Canada and not in Germany.

“Patient comes from the Latin “patiens,” from “patior,” to suffer or bear. The patient, in this language, is truly passive—bearing whatever suffering is necessary and tolerating patiently the interventions of the outside expert.” 

I wonder what would happen if I directed much less energy and time into contorting into these uncomfortable poses (Wait: my chest is tight. Wait: my back is sore. Wait: my shoulders are at my ears. Wait: I forgot to breathe again), and more energy into…what? Something else. Just breathing, maybe. I take up kickboxing, which it turns out is also mostly about breathing and which I also mostly forget to go to. Anyway, it is still more helpful than the doctors I have managed to meet with so far.

Maybe what I am really looking for is not a more accurate label, but just someone’s permission to hit things.

This post is part of a two month series exploring neurodivergent experiences of (non)linear time, supported by the Canada Council for the Arts. Some of the thinking of this blog series has been translated to the risoprint zine, How to Build a Kaleidoscope.