Jay Lake (jaylake) wrote,
Jay Lake

[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.

Tags: cancer, family, friends, health, personal

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