[cancer] What do you say to someone like me?

Yesterday’s post on the hour and manner of my death drew a substantial number of comments on both sides of my blog [ jlake.com | LiveJournal ] as well as on Facebook, many of them very touching. Thank you, everyone. It’s an interesting (and sobering) reminder of the journey I’m on, which I’ve made a deliberate choice to share quite openly.

To that end, I still mean to compose a post on the surgery experience itself. That will come. After I see my medical oncologist on Monday, I’ll have something today Tuesday or Wednesday. I don’t expect answers from them so much as more questions. Cancer really is a disease of statistics and post facto analysis, and is not amenable to accurate forecasting on a case-by-case basis. In other words, expect more existential confusion on my part.

Several folks asked me what they could say or do, how to talk about this process. My first and most important answer is that this is very idiosyncratic. Everyone in a position similar to mine probably has a different way of thinking of this, of wanting to be approached. Many people are intensely private about illness for a whole host of reasons. Many people seek comfort in religious faith or spiritual practice. Some people just surrender to the process. Some fight to the bitter end.

As for me, I have to say, there’s not much anyone can say that’s substantive. Expressions of support, whether in the form of good wishes, keeping a candle lit, prayers or whatever, are always appreciated. But mostly, I am fine with an acknowledgment that this situation is lousy. “That sucks, man,” sits well with me because it’s the simple truth. I really don’t need to be treated any differently, I’m still me, regardless of the circumstances. Sometimes a very reduced me, depending where precisely where medicine and my brain are intersecting, but still me.

If you’re close enough to me in real or virtual life to offer some specific help, that’s good, too. My immediate, local circle of friends and family (a/k/a the Tribe) are very engaged with logistical and moral support on an in-person basis. Other, more geographically distant, friends offer other kinds of support, from running the Acts of Whimsy fundraiser, to acting as my science advisors, to creating art and artifacts that delight my heart, to just sending me bells and funny cards and cool hats and coproliths in the mail.

But mostly I appreciate knowing that my words, my testimony of cancer and its discontents, reach people. It’s not that I feel like I’m shouting in the dark, as I am in fact very aware of my audience. It’s just that feedback helps.

That being said, I have a funny reaction to some things people say to me. This is entirely my issue, not the fault of the speakers/commentors, but I’m pretty allergic to being told I’m a hero, or that I’m brave. By my own lights, I’m doing what has to be done. I didn’t choose this life, I don’t want this life, but being a cancer patient is what I am. So I do what I must. To my way of the thinking, there’s nothing heroic about my life. Heroism, bravery — those require choices and sacrifice. I don’t really have choices any more, and what I have given up has been seized from me by this disease rather than freely offered by me as a sacrifice.

At the same time, much as I believe the story belongs to the reader, I recognize that my experience belongs to everyone else who witnesses it. I have chosen to be public about my illness. What that means is up to each and every one of you reading. So it’s not fair of me to cringe from statements about bravery or inspiration if that’s what you see in me. It is only for me to acknowledge and thank.

In sum, say what you will. We are all mirrors of one another’s souls. What you see in me is what you need to see in me, just as what I see in you is what I need to see in you. I’m not a delicate flower to wilt at the wrong words. I’m just a man, fighting for his life, and narrating that struggle, whether to the bitter end or to a satisfying deus ex machina that might yet lift me free of this tumor-riddled valley of the shadow of death.

My words are my offering, nothing more. Make of all this what you will.

33 thoughts on “[cancer] What do you say to someone like me?

  1. Albatross says:

    Is it okay if we call you an awesome writer? Because… dude!

  2. Ellen Eades says:

    I think that the reason I follow you so closely, Jay, is that I find your thoughts and thought process mirrors my own so often. It feels a bit like hubris, because I don’t really know you all that well, but I completely empathize with the “That sucks, man” message; if I were in your shoes, that would be the most comforting response simply because it reflects the reality of the world. It DOES suck. I’m grateful to you for sharing your thoughts, always.

  3. Jim Crider says:

    Jay, to many folks a hero is someone who does something dangerous, or supremely unpleasant, in the service of others. So what are you doing? You’re gunning for the “I get to keep living” part — but your openness about the whole thing, both what you share publicly, and what you do with your medical team, is indeed in the service of others. Is it heroic? I don’t know. But it’s a service, and it’s a benefit to others.

    I may have mentioned this previously, but in light of the “hour and manner” post, here’s something from how my mother faced her death. As you may recall, she was diagnosed with breast cancer in 1971. It was treated, went away for a spell, and then resurfaced as a metz in her brainstem in 1972. It was a death sentence and she knew it – but she chose to face it on her terms. I was about 4, and my brother about 1, when the metz was found. She was, as you are with The Child, determined to see us grow as far as she possibly could. And she also was highly concerned about Dad. She told him (this, like most of the rest of this, I found out some time later when I was old enough to process it), point-blank, “When I’m gone, you need to find a good woman and marry her. You need a wife, and my boys need a mother.” Dad, understandably, was aghast at this idea and wouldn’t consider it: he *HAD* a wife and Mom was it.

    And so it came to pass that she needed full-time care as the tumor trapped her mind in a body that flat wouldn’t accept commands from the helm with any consistency, and she moved into a nursing facility. At first, we went there every night — I was about 6, David about 3, but as time progressed, the visits got less and less frequent. And when we did see her, she was in worse and worse shape. 8-year-old me thought that was because we didn’t see her as much, so I took to disobeying Dad and riding my bike over to the nursing home after school (had to ride along and cross a major street to do so, which was Dad’s concern). He’d stop by on his way home from wherever his sales job had taken him, and see my bike locked up to a pole outside, and find me there, sitting with Mom. Sometimes she wasn’t able to acknowledge that I was there, but I’m sure she knew it. Later, I learned this lack of “official” visits was her wish — she did not want us, her boys, to see her in her deteriorated physical state. Under the circumstances, I can understand that, but as you can see by my actions, I didn’t much like it. I have the impression that you are probably leaning the other direction, and for what it’s worth, I approve, particularly as The Child is intimately involved in this whole thing, and certainly sharp enough to process it.

    Mom, meanwhile, had conspired with friends and family to facilitate Dad meeting my stepmother, who I also call Mom. Not because she demanded it — no, far from that. She earned it. And my mother’s family were in on the whole thing, and have accepted my stepmother openly and gracefully. A very positive example all around, and one that has certainly informed me as I’ve dealt with stepchildren and, now, the teenage son of my girlfriend.

    And in the fall of 1977, Mom was in a bad way. She’d done all she could, as had the docs, but the cancer had taken its toll. And with family around (not us boys, again, her choice), she asked “Are my boys going to be alright?” – referring to my dad, my brother, and me. And the family said “Yes, they will, and we’ll make sure of it.” And Mom said, “Okay. Then it’s time for me to go.” And she did.

    The cancer killed her. But she decided how she would leave. I only hope that I could face my end with the grace and dignity that she had.

    My brother and I were told the next morning. I had only just turned 9 years old. It was a good 6-7 years before I learned most of what I say above, and all of that was from my grandparents and uncles in response to a lot of questions from me. I’d started seeing a psychiatrist because I hadn’t had the means to sort through everything and it was bleeding over into my daily life. Dad, to this day, doesn’t talk about it without first being pinned down.

    There’s no one “right” way to go, there’s only the one that you see as best for you. It doesn’t surprise me in the slightest that you’re sorting things out for that time. It doesn’t mean there isn’t hope for a indefinite delay in that event — but the efforts to streamline the “dealing with the business side of death” to lessen the load on your relations is certainly a worthy project.

    I don’t wish you death, Jay. Far from it: I hope science can figure something out, something that kills that cancer off and keeps it dead, so that you have a long, happy, productive life ahead of you. Selfishly I hope to have a chance to sit down with you for a large meal and tasty beverages at a JayCon or impromptu regional JayCon somewhere down the line. But at the same time, I commend your pragmatism, the honesty, and the remarkable openness in which you are handling the situation as it evolves. As crazy as this all sounds, I’m absolutely certain that you’ve helped folks you don’t even know, and the journals, the film, the not-deliberate-but-still-there stretching of what the doctors know, everything you’ve set in motion will continue to help people for a very long time indeed.

  4. Jay, your comment about being uncomfortable with the labels “brave” and “hero” really hit home with me. I feel the same when my friends and family tell me they admire my bravery in dealing with cancer. I just don’t see myself as courageous or heroic. To me bravery is choosing to do something that goes against everything I would ordinarily do.
    There aren’t many choices with cancer. It’s either fight, or give up the fight and wait for the end. The fight to me is no more brave than getting up and going to work in the morning when I’d really rather stay in bed. I have to get up and go to work if I want to pay the bills. Fighting cancer is just something I have to do if I want to go on living.

    But as you said, if other people choose to see it as brave, who am I to deny them their opinions.

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