Archive for the ‘illness’ Category

writing to Alston

Tuesday, October 5th, 2010

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ni vu ni connu
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Alston on Alston
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.

Alston Adams 1974–2010

Monday, October 4th, 2010

We met, oh, six years ago? at a YULblog meeting. He was young, social, full of life and angry. Our names sounded sort of the same. I’m the oldest of five, he was the youngest of five. He was in an interracial relationship, I’m from a mixed-race family. We had little in common but there was a feeling of kinship anyway.

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 36th birthday, which would have been November 8th.

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.

Twitter: messages in bottles from stranded naufragés

Tuesday, August 10th, 2010

A very dear friend Twittered last night that he might be dying.*

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.

Vaccinated!

Friday, November 27th, 2009

I went to the Stade Olympique yesterday for my H1N1 vaccine, my first-ever influenza shot. I’d never bothered before because it had always seemed like too much trouble and I wasn’t in a risk group. But for H1N1 they’ve made it really easy and I’d taken the day off work anyway so I could do it whenever and wherever it was convenient.

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.

grief

Thursday, August 6th, 2009

Last night Mark came to bed and Pepe wasn’t there between us. He brought Poupoune into the bed as a substitute, but she isn’t as soft and snore-y as Pepe was. Mark broke down in inconsolable sobs. “I miss Pepe!” “Pepe didn’t want to die!” “He was so happy on his walk.” “He was so helpless. I looked after him!” … and finally, “He needed me.” I cried too, because I was sad for Mark.
 
Today we talked about why he is so much more affected than I am. One reason is Mark’s greater experience of loss, having lost both parents as well as his country and old friends. Intellectually he thinks the decision was probably appropriate, but he feels it to be painfully wrong.
 
Another reason is my own experience of suffering. I spent years trying to get my depression taken seriously so that I could get effective treatment for it, only to be repeatedly told that as long as I could function a little bit that I wasn’t depressed enough—probably not depressed at all. I got treatment after having lived in a dysfunctional relationship for years because I didn’t have the financial or psychic resources to leave; having become unable to do any kind of work; having lost contact with my friends; and having been reduced to walking the sidewalks with tears streaming down my face. As long as I wanted treatment I was denied it. When I no longer wanted it, when I had given up all hope and wanted only to die, it was suggested that I was possibly depressed and would I consider accepting treatment for depression?
 
I am still angry today at having been forced to suffer as much as I did, forced to endure completely unnecessary losses, in order to qualify for intervention.
 
Mark may be projecting his own sense of abandonment, but I am also re-enacting my own story, this time re-written to include the recognition of suffering and need given promptly and lovingly, without begging.

Remedies

Wednesday, April 22nd, 2009

I’ve been sick since March 11th. (I know this because we left on our trip March 10th and that’s when Mark gave me his sore throat.) Mark has been sick since the end of February. Since we got back from our trip at the end of March I’ve been spending my weekends sleeping in bed and getting better, then getting worse again during the work week. Except last weekend we both got sicker and I got fed up. 

  • 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.