Say What?

*10/9 Edited, re: ringing the bell – I know I may be wrong. It’s now been suggested multiple times that I should “check my privilege.” I think that challenge can make a person respond defensively, which means, a person should instead ask, listen, consider. I am.

Say What Part Huh?
No really, say what? What did you say? I wouldn’t have any idea because as I just learned, comments haven’t been posting since sometime in April.

And here I just thought you didn’t like me . . . . 

I’m so sorry I didn’t know. I’ll be moving to another host SOON by which I mean THIS WEEK. In the meantime, feedback of every kind is welcome via one of probably many other ways we’re in contact.

Say What Part Uh Oh
Twitter is where I spend most of my online social energy. Until very recently, I followed a population of content that delivered a relatively balanced mix of bike stuff, politics, news, writers/writing, and humor. 

My own original Tweets are not overly frequent, don’t typically gain more than a handful of likes (usually from people I know), vary widely in subject matter, and are not, as a rule, controversial.

Example, a recent poll:

A month or so ago, I followed and was followed by a few active Twitter users who have or had cancer. I was welcomed and felt my role was mostly as one who sent the occasional “I’m sorry / that sucks / go kick ass” or answered a hopefully reassuring “yes” to various “did you ever have x issue?” type questions. Several of these folks are in the UK and Canada and it’s been interesting to “chat” about the different ways cancer treatments are handled.

I steer clear of interacting with the few angry ranters (one woman is very angry at nurses. Very!) and relentless complainers (I cannot help them). My presence amidst these folks has been simple and non-committal. Some are NED (No Evidence of Disease) but struggling with aftermath / Rx side effects like me, some are in active treatment for a primary cancer, and some are Stage IV in treatment or sometimes not. Among the people in Stage IV are those who self-identify as “terminal” – and some who assertively DON’T. Regardless, Cancer Twitter is not a place for assumptions or clichés. A tossed off “Hang in there! It’ll get better with time!” will not be appreciated. For some of them, it won’t get better.

I am — grieving? — to bear witness to what’s gotten the most attention ever in my history of being on Twitter. It is … not flattering.

I own what I wrote, but feel like it’s been exaggerated and misinterpreted beyond what’s fair. (I know, I know = Twitter.) But it’s the twisting of what I said that’s gotten a lot of women yelling at me. Trying to explain myself in that venue will only make things worse. So I’m going to try here.

The original post from a person I decline to name:

And here, my question to her:

It’s the final part that apparently pissed everyone off. I swear it wasn’t intended to be provocative; it was an honest question: is it too hard?

A possible answer might be “Yes. Yes, it’s too hard. I will never get to ring the bell so it’s hurtful to hear someone else get to.” (which begs more questions but okay)

That simple “yes” was not among the responses. My question assumed to be sarcastic.
I didn’t say that those who ring the bell think they’re cured forever, that I would want to “ring a bell for 30 seconds,” have a loud, family-filled celebration in the chemo ward, or not understand that people have more than one round of treatment. I didn’t call her a killjoy, or cruel for her opinion about the bells. All of those things have been attributed to me. I hit a nerve.

The original interaction has been twisted in threads and sub-threads, the angry replies to me are getting liked in the hundreds and retweeted, some with additional angry comments, all of which I’m tagged in, and it’s not slowing down. A woman with “Dr.” in front of her name replied that she “just stumbled across” (bullshit) an article “written just a few days ago” (it wasn’t) that claims bell-ringing is psychologically damaging and cancer patients finishing treatment who ring bells are 85%* more damaged than patients who don’t ring bells. Another woman suggested I probably want bells installed and rung when women have babies so all women who miscarried would have to hear it and suffer. FFS.

IT’S A BELL. I wanted to ring it when I finished treatment. She doesn’t want anyone to ever do this. We disagree, but what I want has been vilified. I’ve been called insensitive, thoughtless, and cruel. I’ve tumbled into a rabbit hole of “us vs. them” in Cancer Twitter that I was very sad to learn existed. “Us” currently shows no evidence of disease (NED) while “them” are Stage IV and/or terminal. This is terrible. I thought we were supporting each other, all of us.

My bell backstory

My oncologist Dr. L moved away halfway through my treatment and while I immediately liked the new one I chose, it meant changing offices. The chemo ward Dr. S uses holds easily 4 times number of patients as my previous place. The nurses in the new ward didn’t know me. Their procedures were different and nobody explained anything. We didn’t trust each other. I saw them interacting with regular patients with warmth and affection but though I was there every week, I didn’t experience that (TBF; I was really sick by then, and my perception was whack.) But consider this: their ward charged for snacks.
Like the three other chemo wards I’d seen in town, they had a “final treatment” bell and on several occasions I witnessed patients pull that ribbon for a muted “bong.” I counted week by week until it would be me. It was a rite of passage, it was a goodbye to that place, it was, I thought, a soft chime of hope to the rest of the room.

On that last day, I felt tired and sick and alone and sad. I was finishing something I’d planned to endure and attack and conquer with Michelle, but she died before chemo started and my ferocity drained away. I was blessed to have a friend who’d agreed to sit with me. I was grateful and ungrateful for him. He was caring but would be leaving… unwilling to be who and what I wanted him to be. He was gracious and gentle with me. 

When the last IV was flushed, a nurse whisked the blanket away, waited for us to stand, and bustled us out of there, with a crisp, “Last one? Good luck, bye now,” and my head turned to look at the bell as we fumbled our jackets and bags and water bottles. I practiced in my head a question, “Could I – May I – What about if I – ring the bell?” but as we shuffled through the doorway, I held my tongue. Everything felt final in more ways than one; nothing had turned out like I’d expected.

From the hospital we went to Michelle’s grave with a bottle of champagne and three plastic cups. We took flowers. We took a Bud Light for Mike. She wasn’t there, she was gone, she was away, at peace. Her memory was a kiss of spring in the chilly wind. She didn’t begrudge my survival.

Twitter is a perfect place for bullies. It allows for perverting and piling on and it’s no place for a complicated backstory. Do I owe the community an apology? Do they owe me? I own that I could be wrong but I don’t think so? I think the most you can hope for in an environment like social media is that someone finds an answer — or a question — that they seek. My answer today is that I am sitting with the discomfort of a mini-furor that my words caused… and hoping that nothing I’ve written in this essay appears to make excuses for it.

*Or whatever %, I’m not going back to look it up. 

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