I got a stomach bug on my last trip to Winnipeg. I ended up wasting a day in my hotel room, unable to leave for fear of shitting my pants. I dozed and internetted during most of the day and in the evening I watched television. I ordered a small, light meal from room service, ate it slowly and cautiously and kept it down. Then I rolled over and shit the bed without warning.

Staying in a hotel has its advantages. I stripped the bed and dumped everything in the hallway; washed up in the bathroom and put the soiled towels out in the hallway; called Housekeeping to pick up the soiled linens; and moved into the other bed. Cool. It happened again in the middle of the night, but then I didn’t have a clean bed to move in to. I wrapped myself in a complimentary bathrobe and spread a towel on the bare mattress. That’s when I started feeling sorry for my future self, imagining myself living alone and poor in an HLM with a laundromat in the basement, wondering how long it would take me before I stopped changing the sheets when I was sick. 

Then I realised I hadn’t been paying attention to all the television ads I’d been watching. Of course. When I am that sick, in that situation, I will just wear diapers. 

The next morning I didn’t try to eat right away, but took a taxi to work and set my things up in my usual conference room. Then I walked to a drugstore and bought myself a package of Depends and changed into them before getting breakfast at the company cafeteria. They are surprisingly comfortable, which is good to know. I kept a couple of changes in my purse for the flight back to Montreal that afternoon, but I didn’t need them. The bug seemed to have run its course. And all day I was thinking of the Active Woman in the Depends ads, who can leave her home to lead a Busy Life. And I thought how liberating the availability of a disposable consumer product can be.

I’m a big fan of the anti-psychiatry movement. Not because I’m anti-psychiatry - I’m not - but because it gives a voice to some of the complexities inherent in living with mental illness - and in treating it as an illness in the first place.

It’s easy to say ‘whatever works,’ but who gets to define what ‘works’ means?

If two people disagree on whether one of them is ill or not, whose voice carries?

Anti-psychiatry engages these questions strongly and provides a community and a place to speak and be heard for those who do not feel that the DSM speaks for them, and for those whose voices are hard to hear in a clinically-defined context.

Insight is one of yer basic bones of contention. A psychotic, schizophrenic person who refuses treatment on the grounds that she is not ill and does not wish to be drugged is considered clinically to be ‘lacking in insight’ because she doesn’t see herself from the outside; she perceives her broken brain with her broken brain and does not see the problem. The job of the clinician is to try to get her to accept medication she doesn’t want, to fix a problem she can’t see, to improve her functioning for her own good.

From her perspective, she doesn’t have a problem. She’s just fine the way she is. She doesn’t want to accept treatment. She wants society to accept her as she is. If she can accept herself, as difficult and marginal an example of the human condition as there is, why can’t other people do the same?

When I lived in Nigeria, there were a couple of schizophrenics in the local community. They walked solitary, naked, up and down the road. Sometimes they talked to themselves. One of them lived in a broken-down car visible from the highway; his family brought him meals. Physically, they seemed in good shape. As community members their status signalled to me an acceptance of diversity, though it’s equally probable that they served as bogeymen, warnings of what could happen to people who don’t conform. Either way, they had a place in their communities.

Clinically, they were clearly ill. Medication could probably have improved their functioning. If it had been more available to them, and if they had refused, how wrong would that have been?

I’m not trying to romanticise mental illness. Even people who deny their illness may be obviously suffering. Some may be dangerous to others, especially if they are paranoid.

A guy I had a crush on in junior high (the strong, silent type I could project anything I wanted on) assaulted two neighbours when he was in his twenties, killing one of them. Last I heard he was doing time, having refused a sentence that took into account his mental illness on the grounds that he was not mentally ill.

I definitely want my brother taking his meds instead of living in a homeless shelter and frightening people. He was convinced to accept psychiatric hospitalisation and medication on the grounds that the alternative was inprisonment for stealing a bicycle and assaulting a police officer. Now he (mostly) stays on his meds because accepting his status as mentally ill is what gets him his disability cheque and subsidised apartment.

But still, when a friend talked to me about wanting to start medication for depression, I warned her that there were consequences. That depending on how severe her depression was she might have choices and should think carefully about them. I take medication for depression (and hypo-hypomania) and the consequences are something I have made peace with. That doesn’t mean they aren’t there. Identifying your own suffering as a symptom of illness is a double-edged sword. It can be empowering but also alienating.

There are also concrete, here-and-now consequences of treating the marginal. If you treat a homeless person, or someone on welfare who lives in a rooming house and eats in shelters, with depot injections of antipsychotics - what happens in a heat wave? Some antipsychotics put people at risk of fulminating hyperthermia, which can be fatal. If you are living under a bridge, or simply don’t have air conditioning, and you are isolated, who is going to make sure that you drink extra liquid and stay cool? Anti-psychiatry makes the point that people need to be enabled to look after themselves on their own terms. And that legislation that would put marginalised people at increased risk of dying so that those of us who are clinically considered ‘well’ will not have to face panhandlers yelling at invisible voices, quiet panhandlers being bad enough, would be fundamentally disrepectful of the psychotic.

Psychiatry speaks to the empowerment of being able to identify suffering as something outside oneself and to treat it as an illness to improve one’s function. Being able to do this has saved my life. (In another society, however, one less demanding of the individual to be self-sufficient in multiple areas simultaneously, it might not have been necessary. I can never know.)

Anti-psychiatry speaks to the alienation inherent in this approach, and advocates for the interests of people treated medically against their own perceived self-interest.

I can’t see that as a bad thing.

[originally transmitted by e-mail August 18, 2007]

[Anyone reluctant to read about other people's disgusting oozy things and biological functions is instructed to cease reading immediately and to delete this e-mail and forget they ever saw it.]

Before leaving for Toronto last week I developed a canker sore in my cheek. I don’t get them often - I think the last one was probably fifteen or twenty years ago. After a day in Toronto I was really fed up. I was having trouble swallowing, and the sore was clearly poised over some nerves because I had pain in my ear and teeth and that side of my face was numb and tingly from my lips to my lower eyelid. I made an appointment with a dentist. (Why a dentist? Because you can look them up in the phone book and you don’t have to ask if they are gynecologists or gastroenterologists or pediatricians before making an appointment. Because you can get an appointment. Because even if the problem isn’t my tooth, it’s the kind of thing dentists see a lot. Because when I got a canker sore on a trip to Vancouver in… 1974? my mother took me to a dentist. Because I let my Medicare card expire and getting a new card is taking a lot longer than getting a reimbursement from my employer’s dental plan is going to.)

Anyway. It was a very nice dentist’s office. The receptionist had me fill out a card with contact info and medical history. She led me into an office and sat me in a dentist’s chair, and a young man in scrubs came in and started asking questions. I giggled privately to myself about the phenomenon of professionals becoming so very young as one ages. He didn’t look in my mouth though, and the conversation soon tuned to the upcoming Gay Games / Outgames and Divers/Cité / Pride parties in Montreal, which he will be attending. I started thinking that this was a very peculiar dental appointment, and when was he going to look at my canker sore? And then the dentist walked in…

The nice Jewish dentist looked in my mouth, asked a few questions and immediately called in a colleague for a second opinion. I started feeling like less of an idiot for consulting over a canker sore. The stern Goyish colleague looked in my mouth, asked the same questions and pronounced: “Salt water rinses. If it doesn’t get better in three days, come back and we’ll do x-rays and exploratory surgery. No antibiotics. The body heals itself.” As a stern Goyish type myself, this evaluation sounded right to me and I submitted easily. But as the stern Goy turned on his heels and left, my nice Jew started twittering anxiously over me: my mouth must be very painful. Do I need a prescription for painkillers? Ultimately he wrote me a prescription for penicillin, which I accepted after receiving assurances that yes, canker sores were bacterial infections. I giggled privately over this little drama and the cultural split and the stereotypes, imagining them as a couple with their children, one giving directives for life and the other fussing over feelings and offering palliatives in secret.

I had been given the penicillin prescription with the proviso that I didn’t need to take it, but that it would shorten the course of whatever it was. My stern Goyish self held out for two hours before shamefully caving in and filling the prescription. Sigh. So much for cultural stereotypes. (I mean, I know I flout the WASP taboo against TMI, but I had sincerely thought I was good for the one against unnecessary antibiotics.)

My course of antibiotics ends today, and while my thingy has gotten a little better it’s not a dramatic improvement. Another appointment, this time with my own dentist. Who likewise calls in an immediate second opinion. I get a name this time, “aphthous ulcer.” It’s a combination bacterial-viral thing it seems, so antibiotics only help up to a point. My dentist’s second opinion held forth that Big Pharma won’t develop antibiotics against viruses because then they would lose all that income from cold remedies, and that I will get best results with homeopathic Arnica granules. The sore is infectious now, so for the next two weeks, as it finishes healing, no kissing. My own dentist looks on from the sidelines, fascinated. I firmly decline the homeopathy - somewhat scandalised, in fact - and go home to research “aphthous ulcers” on the internet.

Turns out they’re an autoimmune phenomenon of some kind. Neither bacterial nor viral. Certain antibiotics (not the ones I had been prescribed) do help, but probably by their direct effect on the immune system and not by killing bacteria. They are not infectious.

You know how they say to trust your professional and not the Internet? I’m going with the Internet on this one. I have a funny feeling.

And am feeling even more deeply ashamed for caving on the penicillin. (On the bright side, I can go snog my beloved now.)

[originally transmitted by e-mail July 18, 2006]

Poupoune is my favourite dog. She is alert, attentive, attached and one of the most fully alive of earth’s creatures I have ever known. She is also irritable, ill-tempered and quarrelsome.

This winter she’s been grumpier than usual. Cranky. Snappish even. Things she’s never enjoyed — like having her paws caught during wrestling matches — get snarls and air-bites now. She’s become totally fed up with Pepe, not tolerating his presence anywhere near her. And she’s bitten us three times, drawing blood once. The first two times we could kind of understand what provoked her. But when she and Mark were napping together as usual this week and she bit his leg when he shifted in bed was just too much. I immediately made an appointment with the vet.

As I explained to the vet yesterday, my hypothesis was that she’s in pain and snapping at whoever happens to be nearby. The vet put forth another hypothesis, that she’s becoming blind and panics when approached by someone or something she can’t see.

Well, both hypotheses were eliminated. Her vision is excellent (no cataracts, pupils respond well to light, and she blinks when you tap your hand towards her eye), her joints are smooth, flexible and non-tender, her innards sound and feel perfectly normal, and when she runs excitedly around the room sniffing and leaping she doesn’t hesitate or favour any side or leg. For good measure, her temperature and bloodwork were also checked and show absolutely no abnormalities.

This is when hypothesis 3 was brought out: not sick, just bad. (Or in vet-speak, “exhibiting inappropriate dominant behaviour.” Same thing.) The first question the vet asked me when exploring this hypothesis was “Does she exhibit this behaviour in one particular place or situation?” The answer being “Yes, in the bed,” the take-home advice was “Don’t let her in the bed any more.” (Recalls the old joke: “Doctor, my arm hurts when I go like this!” “Well, don’t go like that.”) We were also offered psychoactive medication (for her) to help in the behavioural-modification program.

We’re pretty much going ignore the advice. We certainly don’t need drugs to manage her. We were worried she was ill, and $212 later we know she isn’t. We have our answer. She’s 11 lbs / 5 kg (about the size of a cat but without the sharp claws) and bites us maybe once every one or two months. We don’t have kids. It isn’t a safety concern and we enjoy napping with her. We’ll just be a little stricter: she won’t be allowed in the bed without us. And more severe with consequences when she goes too far, because we won’t be worried about her. We’ll know she’s just being bad.

[originally transmitted by e-mail May 2, 2004]

Updates for the concerned:

Actually, she isn’t. Well she is just like the rest of us, and probably a little faster, but nothing obviously imminent. She had us frightened with that quick series of episodes of whatever, but it turns out that it was a single very ordinary stroke. Apparently it’s completely normal for new symptoms appear days after the episode as the brain copes with whatever happened to it. After many scans and evaluations, the diagnosis is atherosclerosis. The plaques on the insides of her blood vessels can chip off and bits can travel to her brain and get stuck.

Margrit will be going to live in a local rehab centre for six months to learn to work with her new body; after that, we’ll see.

The Dutch do things a little differently. Birth, death and illness are handled privately, in the home, as much as possible. Doctors do housecalls so that people can die of cancer at home with the comfort of morphine. And only they can call an ambulance. If you’re sick and can’t get to a clinic, you call your doctor. Your doctor visits you, evaluates you and will judge if an ambulance is necessary. This part sounds completely weird to me. Your doctor will show up at your home within five minutes of your phone call with a defibrillator if you have a heart attack? Though I suspect that in practice they often evaluate people over the phone and call ambulances right away, without showing up. So that they double as 911 dispatchers. Personally I would rather call a service organised to be available 24 hours than have to look up the number of my doctor’s clinic at 1:00 in the morning, listen to the recorded message, write down the emergency backup number and call that. And I think this system works best for people who do not live alone.

But I can think of lots of situations where housecalls would be nice.

[originally transmitted by e-mail February 13, 2004]

He’s leaving Friday evening for Holland. Margrit’s had a series of neurological incidents of some sort: they aren’t TIAs exactly (Transient Ischemic Attacks) because she has lasting effects that aren’t transient; they don’t seem to be strokes, because her condition is variable, improving and and worsening from day to day; and it doesn’t seem to be her heart, because they’ve done all the tests. (This is third or fourth hand, of course, and has gone through at least one translation. So I am assuming a certain amount of the broken telephone phenomenon.)

But whatever they are, they are getting worse and more frequent. Up from a yearly fainting spell to attacks of paralysis every other day. Compared to yesterday, today her leg is the same, her arm is worse but her speech is better; last week she was speaking just fine and walking with a cane, and had bought tickets to come visit us in Montreal.

Anyway, Mark is off. Mixed feelings. Not wanting to assume the worst, or to give the impression that he is, or to have his mental image of his mother replaced with a sick person, or to get her so excited she has a heart attack, or to become impatient for her to die and get the suspense over with. But feeling that this is an important time and that he should be there.