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Here’s some cached text from youngadultcancer.ca. It’s Alston talking about going on the “July 11-23, 2009 – Owyhee River Kayaking Expedition, SE Oregon, USA” trip organized by YAC and the subject of the film Wrong Way to Hope.

Until May 1, 2007, I led a trite and meaningless existence. Just kidding. Until that date, life was pretty great in most ways. I had just started a new and interesting career in video games. And then…well, you know what happened then. The details: esophageal cancer. One of the worst ones, and unusual for someone that was only 32.

This is a bio, which normally means that it is very much of a compilation of who you are and what you’ve done. It’s part character sketch and part CV. But unlike many other major events in life such as marriage, first child, etc., this one tends to obliterate your life B.C. (before cancer). The effect of this is that UI and many others focus much less on the past and put more emphasis on the future, but especially the present. And that is why I am going to travel for 2 weeks on the Owyhee River with others like me.

This trip is an opportunity to make an impact in people’s live right now. Instantaneously. People around me are organizing themselves in order to realize something they believe in. I personally am reminded of my vitality and ability to contribute to something important to society. And it gets me out of the limbo of uncertainty that surrounds people my age hit with some serious disease.

I am a man, alive, relevant and vital. I am here, right now.

Three years ago he was diagnosed with esophageal cancer.

Two weeks ago we took him for a drive in the country. We thought that sitting in the car being driven around would be about all the activity he could handle, and as it turned out we had overestimated him.

His goal was to make it to his 36^th birthday, which would have been November 8^th.

He didn’t make it.

You know what they say about doing whatever it is now, not putting it off because there may never be a later? Yeah. What they say.

Carpe diem.

Depuis 15 h, ma température est passée de 99,3 à 100,7. Je suis conscient que ma vie peut se jouer dans les heures à venir. Sentiment d’aventure…

He’s worried about the folks he’d leave behind.

Il y a des gens ici qui ont besoin de moi. Je ne dis pas émotionnellement, bien que cette dimension soit évidemment présente, mais directement, de manière très concrète, parce que leur vie est imbriquée dans la mienne. Je ne connais pas de tristesse plus profonde que ce sentiment de devoir, peut-être, abandonner ces gens qui m’ont donné leur confiance. À nouveau se battre.

He has a form of muscular dystrophy. Ten years ago he weighed 56 pounds, including the three steel rods in his spine; today he probably weighs less. He has trouble breathing because of his muscle wasting and he has just caught some sort of nasty cold from one of his staff. She was really really sick, so he is expecting to get really really sick, and when someone in his condition gets that sick they don’t always get better. He was watching his temperature go up last night and wondering whether to call an ambulance to be taken to the Montreal Chest Hospital. I’ll be making calls later this morning to find out the outcome.

He and his sister (who has the same genetic condition and lives in an adjacent apartment) do some wonderful, intensive work for people who are marginal in our society. They have employed illiterate people, drug addicts, people without family, and immigrants – particularly from Haiti. They employed me. They don’t pay much: they receive an allowance from the government to hire staff for a little over minimum wage, so the staff they hire are people who are unable to find better-paying work. They teach them french, they coach them in relationships, they explain Québec culture and help people figure out how to cope with their new situations. They have shared their living space. Whatever they can do to help someone develop their full potential. Most of all, they offer profound, unjudging friendship.

My friend is a disabled man without paid employment, but far from being a burden on society he is a householder who will leave behind people who will be poorer for his loss.

We all know he is going to die. We first met in the late eighties, when he was seventeen. He thought he might have ten years left then, for the last five of which he wouldn’t have the strength to lift a pencil. He’s outlived everyone’s expectations. But we all hope… not yet. Please.

*** *** ***
A friend responds, “What an incredible opportunity to thank him for all that he has meant to you and the world.” Wise advice, and I will follow it.

_______________________________________
* If you’re wondering why these tweets are longer than 140 characters, it’s called Twitlonger.

I still had to think about whether protecting myself against a deadly strain of influenza virus was really something I wanted to do. A likely outcome is that I will have a longer old age, which is not something I necessarily want. (Healthy but not particularly long would really be the ideal for me.) But another likely outcome is that I will not be a vector transmitting H1N1 to other people who might actually be gunning for that long, productive life but who might not be in a condition right now to be vaccinated: small babies, for instance, can’t be effectively immunized against influenza. My friend with cancer, who most definitely wants to live, may get only limited protection from a vaccine and is largely dependent on the people around him to not transmit it to him. The girlfriend of the woman who is dying of lung cancer in the apartment upstairs will not be able to point the finger at me as being the one who infected her with her final illness. And I will not interrupt the old ages, happily surrounded by children, grandchildren and great-grandchildren, of my old relatives.

So I got the H1N1 vaccine and will get the seasonal flu vaccine when it becomes available. If I ever decide my old age is dragging on too long there are ways around that that do not involve making other people sick.

• My father’s remedy, which has been given to him by wise women in Montreal (our pediatrician in the 1970s), Nigeria, China, Sri Lanka and Bangladesh:
  A bowl of steaming hot water;
  Twigs of the wise woman’s favourite plant;
  Lean your head over the bowl and breathe.
• The steam is the important part. Each wise woman has her own twigs and the technique works well in every country anyway. The western MD left out the twigs entirely. The twigs make you feel like you’re doing something medicinal and they make the house smell nice. Eucalyptus is common. 

Mark and I spent the weekend steaming ourselves. It may have helped. I used a little eucalyptus oil in the water, which was probably a bad thing because it stung our eyes and we spent less time breathing steam than we would have otherwise. Twigs would have been better, but so would unadulterated steam. 

I hauled Mark in to see his doctor on Monday. It was a walk-in clinic so I was hoping to be seen too, but no such luck. I don’t have a file there and they weren’t going to open one.

• Mark’s doctor’s remedy: 
  1 cortisone nasal spray;
  1 cortisone inhaler;
  Plenty of sleep;
  Regular hand-washing.
• He also got prescriptions for a chest x-ray and an antibiotic, the latter to be filled only if the former shows pneumonia.

So far he’s still coughing a lot and doesn’t feel much better, but he did sleep through the night last night for the first time in a while. 

I went in to work after my failed attempt at a clinic visit but was sent home for coughing too much. I was planning to stay anyway (I don’t always have to work face-to-face with people, and working alone in my little cubicle is not much less restful than sitting around at home) but changed my mind when I got whole-body aches. Crap. The flu. I didn’t get a shot this year.

I went to my clinic yesterday. Mark dropped me off and swiped a face mask to wear going to his x-ray clinic.

I was seen first by a nurse, who didn’t introduce herself as such. I started to realise she wasn’t a doctor when she started asking me questions and writing down the answers without looking at me. Doctors look at you because they’re trying to figure you out. When she asked me what medications I was taking and she’d never heard of them — I had to spell them out — I knew for sure she wasn’t a doctor. She did a swab for a quick strep test (negative) and sighed, said I’d need to see a doctor and took me to another exam room where I was seen by a medical student.

Yaay! I love being seen by medical students. I get to participate in their training and it’s fun to compare what they do with what a doctor does. The medical student carefully went through a standard checklist of questions and turned up notable but irrelevant facts about my poop. She enjoyed listening to my heart, though it had no connection to my cough, just because I have an interesting murmur/arrhythmia. We reviewed my history related to my heart purely for the sake of education. Then she went away to present to the doctor.

When they came back together, the doctor quickly identified that I’d had asthma as a teenager and that my whole-body aches had started only the day before and were therefore from a new virus and not relevant to my complaint of six weeks of coughing. He also made a connection between my heart murmur and my recurrent colds and coughs: I must not use stimulant cold medicines! They are bad for my heart! I assured him that I do not use stimulant cold medicines: they make me feel like crap. (I had always assumed they made everyone feel like crap, but that other people found that more tolerable than their cold symptoms. Now I know that they really do make me feel worse than they do other people.) It was quite cool to compare a newbie and an experienced professional asking questions about an everyday, very banal complaint. They were both smart and nice, but one was better at it. 

• My doctor’s remedy:
  2 asthma inhalers, one cortisone to be used for two weeks to a month, and one bronchodilator to be used for four days or as necessary.
• I should keep them around and use them again next winter when I get sick again and keep coughing long after I should be better, because it’s probably just irritation at that point.  

Anyway, this post is not because I think anyone’s interested in the details of my cough or poop. It’s because I’m interested in the way different people approach similar problems.

My father didn’t ask questions to try to figure out exactly what was causing our misery: he didn’t need to. He could hear us both hacking away and shared the remedy that he uses successfully to ease his own distress when he is hacking away.

The doctors asked fairly pointed questions and took measurements to determine exactly what was wrong. Mark was determined to have a virus and post-nasal drip and given the appropriate remedies to ease his distress; I was determined to have a virus and asthma and given the appropriate remedies to ease mine. For both of us that means cortisone inhalers.

Question: what is the relative efficacy of steam with eucalyptus twigs vs cortisone inhalers? I know from experience that steam has a greater risk, because my sister ended up in the hospital for six days with second-degree burns after tipping a bowl of boiling water into her lap trying to steam her sinuses. And I can bring inhalers to work but I can’t steam my head at work. So even if they were equally effective there would still be reasons to use inhalers. But… is there a fundamental difference between my father’s remedy and the doctors’?

The other question is more philosophical. Going to the doctor gives me peace of mind, and that’s really what I went for. Not the inhalers. Now we know for [pretty] sure we don’t have chronic infections. Mark will know for sure that he doesn’t have pneumonia (but will be able to treat it if he does). This peace of mind is important to me. I want to be told specifically what the problem is and what the scope of it is. I don’t want the uncertainty of thinking we possibly have something worse than usual or worrying about what we’re doing wrong that is dragging things out so long. Without access to doctors, would we be steaming away and not fretting about it? Either steaming helps or it doesn’t. Either we get better soon or we don’t. Would the peace of mind issue become a non-issue?

I suspect it wouldn’t. I don’t think the idea that we become fatalistic when denied information is really borne out by experience. I think we can look around and see that people are pretty free about inventing information when they don’t have it, and give themselves peace of mind that way. I think the exercise of seeking out information when we don’t have it instead of making up an answer is probably at least as valuable as the answer itself, at least in the situation of persistent respiratory thingies in otherwise healthy adults.

Then there’s judgement about when knowledge is necessary to peace of mind at all. Up to what point do we tolerate not knowing, before we either try to find out or make up an answer? What does it say about me that my intolerance for not having descriptions of the exact causes of our coughs sent me to the doctor when I have a perfectly good home remedy that appears no less specific than the pharmaceutical one?

Besides that I felt like crap, of course.

Oh dear. Magical thinking. Ineffective remedies. And badgering the poor man in his last days. Can’t she just let him die in peace?

And then I thought: good thing he’s not my brother. I’d probably be muttering “What, not dead yet? What are you waiting for? Look, it’s in your brain, no point in hanging on now.” At least my neighbour’s brother knows he is loved.

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.

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]

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]