[Cancer]
[cancer] Continuing to think about what cancer means to me
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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Posted: 10:34 am Sun November 18 2012 |
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@jay_lake I heard the spiritual cause of cancer is self hatred. I guess you are both healthy and ill. Hope you conquer the monster
Jay, I struggled so with whether to invite you to ICFA, knowing you would want to come and knowing it was not possible during your current (maybe now changing?) treatment regimen. I did not invite you, but wondered whether I should so you would know you were welcome. I finally decided you would know we’d want you, and you would contact me if you were able to travel. It’s hard to know the right thing to do from across the country, other than to send love and best wishes.
Thank you, Sydney. As I just commented on the other half of my blog, I expressed myself poorly. I do want to be invited to things where possible. At the same time, there are serious practical issues. (And, yes, ICFA falls deep in my no-travel zone this year, given my current treatment schedule.) I think my problem was the very casual, “Oh drive across town to see me” from someone who could just as easily have come to my house, and absolutely is (or should be) familiar with my day-to-day condition, where most external observers would not be. It felt deeply thoughtless to me, in a way that an invitation to ICFA would not — rather, that would feel like an honor and consideration.
[cancer] Continuing to think about what cancer means to me http://t.co/eK2QfteC (via @jay_lake)
Jay Lake: [cancer] Continuing to think about what cancer means to me http://t.co/KwnGtCfp
I’m sure it varies a lot from person to person, but all the people I’ve known in-person with Crohn’s, MS, and Lupus all experience considerable variation in how much it impacts their lives day to day — often in fact using the term “flare” for when it’s particularly bad.
Your basic topic here is fascinating, hoping for good comments too.
A lot of self-appointed PC speech policing is really a form of aggressive competition disguised as caring concern for the Greater Good. The complainant gets to feel like a crusading hero for the downtrodden, while engaging in destructive kind of one-upsmanship: who is more concerned with the plight of the disadvantaged, who has more life experience, who has suffered more, who is wiser. The complaint may even take the form of projection: if I were in that position, I imagine this is how I would feel; so the trigger word or phrase is offensive to everyone.
At the worst its a kind of Rovian attack: strike the opponent where he is supposedly strongest, using any kind of distortion and misrepresentation to twist the facts.
I’m not saying all PC speech complaints fit this mold but a lot of them do. Everyone can be thoughtless sometimes, so sometimes complaints are valid. But there can be a lot of destructive attack in there too, whether conscious or unconscious.
For whatever it’s worth, I took this email in good faith. It’s a familiar pattern. As often as several times a year, a much younger person who’s recently become sensitized to social justice and privilege issues identifies me through my public persona as an older white man with good but misguided instincts, and reaches out to correct me. (We’re all familiar with the highly toxic version of this from several years ago, in the Internet Kerfuffle That Shall Not Be Named because I don’t feel like calling down the harpies this week.)
I get very bored with having recredential myself as something other than a completely stereotypical white dude ignorant of his entitlement and privilege, but at the same time, I do respect a young person who has the courage to take the time to reach out to a (semi)public figure in that way.
And now I’ve made myself sound completely like a patronizing middle aged white dude. Oh well.
Jay Lake: [cancer] Continuing to think about what cancer means to me: Sometime overnight I had an insight, or po… http://t.co/dtb5iONy
[cancer] Continuing to think about what cancer means to me: Sometime overnight I had an insight, or possibly an … http://t.co/Ok8Ci8EE
How does the cancer being chronic and the treatments being acute sound? As far as I know, you haven’t had any direct symptoms from the cancer itself, only from the treatments.
With cancer you get casserole. With a chronic illness, friends don’t bring you food– they don’t drive you to particularly difficult appointments. They don’t check-in to see if you need help when illness flares. You still bake them casseroles, but you don’t expect to see a payback, piping-hot, Corningware dish delivered to your door any time soon. Which is fine, since who really likes casseroles, that cheap and easy food-of-choice for meals of condolence and post-mortem celebrations of life? (Just remember to return the dish.)
Perhaps we’re wired this way, to care more about crisis than ongoing? We are a species who seems uncomfortable with continuing state that offers little chance for change. We want to believe that good things are still possible in horrible situations, that it helps when we can bring good cheer to others–both for altruistic reasons and because it provides cheer for ourselves. We see this way of thinking in every failed nonprofit, in tsunami and earthquake donation drives, in Thanksgiving Day food kitchens with as many volunteers as hungry congregants, and in comparing the number of volunteers you meet working in nursing homes versus the number who work in hospitals.That initial high-spark-flame burns out as time goes on, even as some chronic diseases crawl toward death at a much slower pace than others.
We share experiences despite our diagnoses and short or long-term prognoses. People with chronic and acute illnesses all deal with the changes to body image and self-worth. We question our ability to care for ourselves, and for others. There’s quite a bit of crossover with fear. Living organisms die. With an acute disease you have a clearer sense of when and why than you might with a chronic disease, but chronics still know that our chances are better than average our disease will kill us, either outright or by increasing our chances of getting something worse, like cancer.
The casserole is really the main difference. I’m sure insurance companies have defined it another way–no doubt calculating the monetary value of all procedural interventions, but I’ve found the casserole test to be an accurate, working definition that reflects our common experiences. When a chronic gets a casserole delivered, watch out. It can’t be good news.
[...] in email that would cause you serious problems if shared or publicized.”“We all die. Not all of us get to plan how to die well.”“I don’t want to be dismissed so easily.”“The lay people had to go [...]