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[cancer] Continuing to think about what cancer means to me - Lakeshore
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Jay Lake
Date: 2012-11-18 09:34
Subject: [cancer] Continuing to think about what cancer means to me
Security: Public
Tags:cancer, family, friends, health, personal
Sometime overnight I had an insight, or possibly an epiphany. At least an epiphanette. It arises from several recent streams of both thought and experience, and I'm not sure by the cold light of day whether this makes as much sense as I first believed, but I'm trying to come to terms with questions of illness and mortality. The first of those is whether or not I consider cancer to be a disability.

tl;dr version: A lot of wandering thought about disability, lifestyle and mortality

Wikipedia, quoting the World Health Organization, defines a disability thusly:
Disabilities is an umbrella term, covering impairments, activity limitations, and participation restrictions. An impairment is a problem in body function or structure; an activity limitation is a difficulty encountered by an individual in executing a task or action; while a participation restriction is a problem experienced by an individual in involvement in life situations. Thus disability is a complex phenomenon, reflecting an interaction between features of a person’s body and features of the society in which he or she lives.


Well, it's certainly true that I experience impairments activity limitations and participation restrictions. But that still doesn't seem to me like it describes my personal experience of cancer.

This is related to the question I have never settled in my own mind of whether cancer is a chronic or an acute disease. (Wikipedia is silent on this matter.) Part of that question is the issue that the term "cancer" is more descriptive of a biological process than it is of a specific disease. In my case, in the 55 months since I was first diagnosed with tubovillous adenoma, also known as colon cancer, I've spent about 30 of those months in severe medical stress of one sort or another from surgery, chemotherapy or early stage recovery from those treatments. More than half my life since the initial diagnosis has been consumed by it, in line with the above definition of disability.

Yet I find myself unwilling to call this a chronic disease. I sometimes get time off for good behavior, after all. Which is never true of people with MS or lupus or AIDS or diabetes or Chron's disease or or or or, who wake up every day of their lives dealing with the same issues. I get let out of medical prison every now and then to walk around in full energy and everyday health, for months at a time.

In this vein, I've struggled repeatedly with my self-image. Am I a healthy guy who's sick part of the time? Am I a sick guy who's healthy part of the time? This has implications in everything from my parenting to what's left of my writing career to how I scale 401(k) contributions in my employer's annual benefits election window. It affects my whole life.

The fact of the matter is, my days of time off for good behavior are far more limited in the future, and may already be over. But that's a function of the gradual acceleration of my cancer coupled with my own aging and slow decline n the face of the treatments.

To that end, part of my recent insight was that I don't have medical issues so much as I have mortality issues.

My good friend Miki Garrison deals with health issues much more complex and devastating than mine. She has all her life. Her relentless forward momentum and focus have been one of my key inspirations in my own journey through cancer. She is often (but not always) optimistic, but that's not the point. The point is she never gives up, and she keeps moving no matter what gets thrown at her.

Despite my periodic whining about cancer and its discontents, that's been my approach to my treatments as well. In significant part, modeled on my decade plus of friendship with Miki and my necessarily limited understanding of how she has coped with the challenges in her life. Miki is one of the people who has shown me how to live.

What I've been working through lately is learning how to die.

To be clear, I'm not experiencing a mortality diagnosis at the moment. I am pretty panicked about the tests this forthcoming week to track down my increasing CEAs. Most of the possible explanations would have significant negative impact on me in terms of diagnosis, treatment and even more foreshortened life expectancy. But even if this CEA business is an innocent flare (which would be the good news, if there's good news to be had), I don't expect to live more than another four or five years at most. And much of that will in a state of increasing decline and lessened physical (and ultimately, mental) capacity.

I've known since this new round of metastasis was diagnosed last summer that I'm far more likely than not on a mortality track. The simple fact of a fourth recurrence puts me in a very gloomy statistical category. We've certainly not given up on a full cure, but as one of my oncologists said, that window has gotten very narrow. I've had time to get used to the idea, nibble at it in small ways. But that idea came to me while I was in one of my periods of time off for good behavior. I possessed all my mental and emotional faculties when I got that news.

This CEA stuff, now, that we're testing for, comes at time when I'm single-threaded and peevish and emotionally exhausted and low bandwidth and hard of thinking and overly emotional and all the other things chemotherapy does to my cognitive skills and fundamentally good natured outlook on life. In other words, much harder to process.

Which leads to me to some of the other streams of thought that pushed my epiphanette.

I recently received an earnest email from a college student gently critiquing my use of ableist language in my blogging. They carefully explained to me about the prevalence of mental illness in society, and how my application of terms such as "crazy" and "nuts" to political discourse was harmful.

My internal response to this was complex. I eventually wrote them a long, careful email in which I tried very hard not to come off as a patronizing middle aged white dude (and almost certainly failed spectacularly in that effort). It was probably a lot more response than they were hoping for. We shall see if the correspondence continues — I welcomed that at the end of the email.

Part of my internal response, and what sparked me to invest deeply of my precious time and limited cognitive capacity in crafting the email, was the implication that I wasn't aware of the social and emotional terrain of mental illness, nor was I conscious of ableism as a social phenomenon.

Though I don't talk about it very often, I have mentioned publicly before that I was hospitalized for a suicide attempt at age 15. I was diagnosed with chronic clinical depression, and spent many years in therapy as a result. Cancer has, to put it mildly, brought the depression roaring back, though in this case it's considered acute with an obvious external causation. (i.e., I'm no longer swimming in a stew of adolescent hormones and traumatic unresolved life experiences including abandonment and childhood sexual abuse.) Incidentally to that, I am almost certainly diagnosable with at least two other DSM-IV recognized disorders, though we've never bothered to do so since in general I live a happy, functioning life and don't require treatment. So it took me aback to have someone task me with an effort to understand how people with mental illness might feel about my language.

The second thing was the notion that a long-term cancer patient wouldn't be conscious of ableism. Even my friends who've know me for years throw me curveballs in this regard. In the past few days I had one friend ask me to attend a major event over the weekend with them, and another ask me to drive half an hour across town to meet them for lunch one day next week. This despite the fact that everyone close to me knows perfectly well I haven't gotten behind the wheel of a car in almost two months, and won't do so again until next May or June at the earliest — in other words I can't drive anywhere to meet anyone without help from a friend or family member. Likewise, everyone close to me knows perfectly well I almost never leave the house anymore except for medical appointments or urgent errands requiring my personal attention. I certainly don't have the energy or cognitive capacity to go spend hours at a public event.

Those are tiny examples of the thoughtlessness that healthy people bring to a friendship with someone who isn't healthy. They are tiny examples of ableism, of making unconscious assumptions about the capacity of the people around you which can be hurtful or even destructive. They were both well-meaning, and they both came from people who care about me a lot, who absolutely should have known better, who have been told better, and just didn't think about what they were saying.

I live with ableism, in a small way, every day. Even from my best friends sometimes. So it took me aback to have someone task me with an effort to understand how people with disability challenges might feel about thoughtless use of language.

Throw all the above, rambling mess into the pot, stir for a day or two with chemo fatigue and miscellaneous social interactions and periods of thought, and we reach my promised epiphanette.

I am a sick guy. Barring a near-miracle, I'll be a sick guy until I die, in the not too distant future and well before my time. I could be considered disabled, but don't think of myself that way, though I'll eventually have to accept the designation formally in order to qualify for certain kinds of late-life and end-of-life benefits and care. And I think I've finally accepted that I have medical issues, and they're a permanent part of my life.

It's the mortality issues I need to wrestle with. Not the disease or its treatments. Those are my path now. But how to die, and how to die well, and how to die lovingly. I plan to put that off as long as possible, but my "as long as possible" is much shorter road than most people of my age.

We all die. Not all of us get to plan how to die well.

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triskelmoon: Mackie and Me
User: triskelmoon
Date: 2012-11-18 17:48 (UTC)
Subject: (no subject)
Keyword:Mackie and Me
Thank you for sharing this, Jay. It has initiated a lot of thinky thoughts in my own brainpan.
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makoiyi
User: makoiyi
Date: 2012-11-18 17:55 (UTC)
Subject: (no subject)
First, thanks for sharing this. What strikes me is that in a situation like this we become so internalized, obviously, but there is a cry within us of - can't they see! I know with my own grief, part of my internal reaction was, how dare the world go on normally when it is doing this to *me*. As though everyone should share what I was feeling and know that life sucks. It's a hard thing to articulate, which is why what you have to say is so valuable.
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crows o'clock: Seer
User: sheistheweather
Date: 2012-11-18 17:57 (UTC)
Subject: (no subject)
Keyword:Seer
Many thoughts, no words to apply to them right now. I read this.
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Emma Bull: Cat in Specs
User: coffeeem
Date: 2012-11-18 18:18 (UTC)
Subject: (no subject)
Keyword:Cat in Specs
Huh. I hadn't articulated this before, but I don't associate "crazy" or "nuts" with mental illness. Likewise "loony," "whacko," "bananacrackers," or any other slang terms that, I admit, probably originated to describe behavior that could be attributed to mental illness.

"Depressed," "dissociative," "hallucinating," "bipolar," "psychotic"--those, for me, are about mental illness because they communicate something specific about someone's mental condition. "Crazy" can mean "random, unexpected," as in a crazy quilt or a carnival ride. That definition is probably at the root of the application to a political party or the driver in the next lane: something that appears to be behaving in a way contrary to reason or expectation.

Using "crazy" to refer to mental illness isn't useful or accurate, because it doesn't convey any information beyond that the person using it doesn't understand why the person being called that did or said something. You haven't used it to refer to mental illness, at least that I've seen. (Says a woman who's awfully glad her antidepressant keeps her alive and productive.)

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Elizabeth Coleman
User: criada
Date: 2012-11-19 16:23 (UTC)
Subject: (no subject)
Yeah, I'm with you on the use of "crazy." (Says someone who commonly refers to her mom as crazy, though I always follow up with, "like, actually clinically schizophrenic.")
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Karen
User: klwilliams
Date: 2012-11-18 18:28 (UTC)
Subject: (no subject)
I'm disabled. A year and a half ago, I wasn't, but I will be, to a greater or lesser degree, for the rest of my life (which I'm told will be shortened by five to ten years). One of the things I've found interesting, in that clinical, can't-avoid-looking-at-a-car-wreck kind of way, is how closely what's been happening to you and your body mirrors the kinds of things that MS has been doing to mine. Yours is happening much, much faster, but there are clear parallels. Sorry about that. And I think you're disabled. It sucks, but society now has some helpful aids in place that really do help. Handicapped parking is a godsend. So is boarding first on Southwest.

My best friend was disabled for years before she died from side effects from the radiation that cured her childhood cancer. One thing she found extremely frustrating was that people wouldn't invite her to things because they didn't think she could come. *She* wanted to make that determination. Yes, she probably couldn't come, but she hated being automatically knocked off the invitation list like she didn't exist. Yes, your friends are from one standpoint being ablist, but from another they're remembering you and treating you like a real person, not a sick person to be mentioned only in whispers and understanding nods. Of course you can't make the events, but at least you're the one who's saying no.
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Swan Tower: swan
User: swan_tower
Date: 2012-11-18 19:58 (UTC)
Subject: (no subject)
Keyword:swan
Your second paragraph echoes what I was thinking. I think it's often a bit of both -- the bad and the good, the ableism and the inclusion -- and I'm chewing on how to try and tip that balance toward the good. I suppose some of it might be remembering to acknowledge the obstacles in the invitation: "I know you may not be able to come, but if you're interested..." Etc. Something that makes it clear they haven't forgotten the problem, but also haven't forgotten you.
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Dichroic
User: dichroic
Date: 2012-11-19 09:44 (UTC)
Subject: (no subject)
I think it also depends on the specific events. There's a difference between "My book-signing is at ___ and I know you may not be able to make it but..." or even "I'll be in your town for only two hours and can't go far from the airport, but if you can make it out that way..." vs "Let's have lunch sometime. I know a great restaurant forty-five minutes' drive from you..." The former examples just need more thoughtful wording, as you say. But in cases where the entire event can be replanned to make it easier (like two people having lunch together) it should be.
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Nat S Ford: ms
User: natf
Date: 2012-11-25 02:09 (UTC)
Subject: (no subject)
Keyword:ms
/agree

As another of jaylake's readers with MS, I have also noticed the likeness between the sets of symptoms, especially when it comes to MS-fatigue and chemo-fatigue. I see my MS (relapsing remitting) as chronic with acute flares/relapses. I think of my stepdad's cancer similarly - he had one remission after the first presentation and treatment and then relapsed when they found that it had recurred and he eventually died (it was pancreatic). In that way he still *had* cancer in a chronic "there is no cure" manner and had acute presentations that are very similar to MS flares/relapses/exacerbations.

Apologies for getting all technical and big-worded - I have a BSc Biochemistry from back in the late 80s…

Edited at 2012-11-25 02:10 am (UTC)
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mevennen
User: mevennen
Date: 2012-11-18 19:01 (UTC)
Subject: (no subject)
I recently received an earnest email from a college student gently critiquing my use of ableist language in my blogging. They carefully explained to me about the prevalence of mental illness in society, and how my application of terms such as "crazy" and "nuts" to political discourse was harmful.

You're a much better person than I will ever be, Jay. I'd have sent a 2-liner back to the sanctiomonious little shit consisting mainly of "I have cancer. Fuck off."
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Karen
User: klwilliams
Date: 2012-11-19 19:31 (UTC)
Subject: (no subject)
You're my model of how I want to be. I tip my hat to you. (I'd probably send the two-liner back myself, though just slightly more politely. Because I'm not as brave as you.)
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Nat S Ford: disabled-warrior
User: natf
Date: 2012-11-25 02:04 (UTC)
Subject: (no subject)
Keyword:disabled-warrior
Hear hear! PC language pisses me off but someone talking about "spazzy hands" in their podcast finally got to me after about twenty episodes. When I politely asked them if they realised that "spaz" is a contraction of "spastic" and refers to people who have spasticity disorders (my uncle has cerebral palsy and I have MS) and included that link, I then was ganged up on by all of their podcaster friends, flamed and called over-critical - even though I only asked if they realised… Apparently I am the one that is insensitive, not them. As for your reply suggestion, I actually wish that I had replied to her like that rather than attempting to educate the ignorant. It seems that trying to be polite and helpful made me a target.
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Laura Anne Gilman
User: suricattus
Date: 2012-11-18 19:08 (UTC)
Subject: (no subject)
Hrm. As someone with Crohn's, I think "chronic" is a fair enough description for long-term cancer, too. It has certainly shaped my life (there are things I can't do, things I can't manage), but there are flares and remissions, and the pain, when it comes, is something I manage, either with drugs and rest, or sheer doggedness. And there are times it wins, no contest. Sounds familiar, from your posts.

And speaking as someone who invited you to an event recently, it was purely on the "if you are up to it, I'd love to see you" level, knowing full well you wouldn't be able to make it. So yeah - What Karen Said about that.
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Jay Lake
User: jaylake
Date: 2012-11-18 19:33 (UTC)
Subject: (no subject)
I think I spoke poorly. Because I do want to be included in things -- and thank you. I need to find time to reframe what bothers me about these two particular instances.
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Nat S Ford
User: natf
Date: 2012-11-25 02:15 (UTC)
Subject: Re: "Crazy"
/agree

Also, I think that it is perfectly okay for someone to call themselves whatever they want to. naamah_darling publicly calls herself "crazy" when writing about her bipolar. I think the PC-police need to realise that, as long as a person realises the potentially triggering connotations of their words (which I am sure that jayliake does as a very intelligent-seeming writer), and as long as they are not flaming anyone else with such terms then they are perfectly within their rights to call themselves whatever they wish.
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LiveJournal: pingback_bot
User: livejournal
Date: 2012-11-18 20:10 (UTC)
Subject: Disabled. Disordered. Together, so say we all.
Keyword:pingback_bot
User jorhett referenced to your post from Disabled. Disordered. Together, so say we all. saying: [...] as Jay deals with very well and very extensively in his post about coming to terms with disability [...]
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martianmooncrab
User: martianmooncrab
Date: 2012-11-18 21:22 (UTC)
Subject: (no subject)
A lot of people dont comprehend chronic long term illness or disabilities. Nor do they understand mental illness or depression. Or scheduling.. if you do A you cant do C or F.. there isnt enough energy or drugs to make that happen.

Nor do they understand the morbid humor that accompanies one on this journey. The friend I helped through his cancer treatment tried to off himself twice in less than 18 months, and I can still wave my Medical Power of Attorney at him today and make really bad jokes. Which he laughs at, while others are appalled at my "bad taste"

On this journey, its fun to stop at the roadside attractions ... that final destination will still be there.
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cathshaffer
User: cathshaffer
Date: 2012-11-18 21:52 (UTC)
Subject: (no subject)
The person that wrote you the letter is probably swimming upstream against society's prevailing use of "crazy" and "nuts," but it's not a bad point, and one I'll be considering in my own language usage. I worked hard for several decades to understand my mother's experience of schizophrenia, but even after all of that, there is such a gulf of experience between us. It truly is the last frontier when it comes to experiences you can't understand unless you've lived it. I think it is the very worst fate a human can have on this planet. I think it's worth listening to those people on the matter of how they can be made to feel included, rather than alienated. I don't think those concerns can be dismissed by people who, at the end of the day, get to have jobs and functional relationships and whatnot, in spite of their need for meds/therapy/etc.
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Elizabeth Coleman
User: criada
Date: 2012-11-19 16:30 (UTC)
Subject: (no subject)
>>I think it is the very worst fate a human can have on this planet.
Amen to that. Because in addition to not being able to know what's real, thinking everyone you love is trying to hurt you, and actively feeling invisible people molesting you, more often than not society kicks you to the margins. Me, my dad, and probably my uncle are the only things standing between my mom and bag-ladyhood.

I don't think I knew you had a schizophrenic mom. Next time we meet, we'll have to share stories. (I'm actually taking care of my mom for a week right now, which will be the longest I've been alone with her.)
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cathshaffer
User: cathshaffer
Date: 2012-11-19 16:46 (UTC)
Subject: (no subject)
Yes, she died last year. My mother, like yours, was lucky to have a supportive family. She had to live in a group home at the end, and I heard from social workers that the vast majority of the clients in the system have zero family support. It's just too exhausting and destructive to relationships. Sadly, we struggled a lot with the "everyone you love is trying to hurt you" part, as Mom would tend to play one family member against another as her various delusions about harm manifested. She never had a day of peace during the long years of her illness. I hope she is at peace now.

Happy to chat with a fellow traveler on this road any time.


Edited at 2012-11-19 04:47 pm (UTC)
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amphigori
User: amphigori
Date: 2012-11-19 08:06 (UTC)
Subject: (no subject)
<3
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dionysus1999
User: dionysus1999
Date: 2012-11-19 17:38 (UTC)
Subject: (no subject)
I have mixed feelings about the words we use in mental health as a former practitioner. The DSM-IV is a cookbook, at its worst, and merely collects clusters of symptoms. Some people can end up with multiple and conflicting diagnoses.

I've seen first hand the damage a label can do to fragile people looking for answers to their terrible circumstances. Some days I think using just "crazy" would be a blessing.

What's the demarcation point between assumptions of ability versus needless patronizing?
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Jay Lake
User: jaylake
Date: 2012-11-19 19:47 (UTC)
Subject: (no subject)
Thank you.
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