Make the Most of

Zeynep Tufekci
Mar 8, 2015 · 8 min read

Your Day

On March 7, 2015, I walked off a plane after a long flight, took out my phone and offhandedly glimpsed at my email. “Lisa Bonchek Adams” is popular in your network, the email from Twitter said. My heart sank. I knew it wasn’t going to be good news.

I have never met Lisa in person. I first encountered Lisa online, after another woman I also admired, and also have not yet met in person, Xeni Jardin, was diagnosed with breast cancer, and Xeni mentioned (or retweeted—I no longer remember) Lisa, and I looked up a post on Lisa’s blog and was struck by the clarity and the strength of her voice. I started following her writings. In 2012, about a year later, Lisa was diagnosed with a metastases , or a spread, of her breast cancer which had been in remission for five years. Lisa’s story is what gets left out every October in the Pink Month of Breast Cancer. She, and others like her, disturb the “pink-washed” celebration of recovery. Many women do die of breast cancer, which can spread even if “caught early” and treated aggressively. The problem with the “pink month” was not rejoicing for those who recover, but how little attention and crucially, research money, went into treating breast cancer metastases, which is the way cancer kills. I thought that patients using social media to challenge a dominant narrative which erased their experience was something worth researching and writing about.

But that’s not why I was drawn to Lisa. She was a writer, a great one. She tweeted and blogged with gusto, zeal and courage. She wanted to tell her story herself. I appreciated her no-nonsense, rational yet compassionate approach. She didn't suffer fools gladly, and she dedicated herself to correcting misconceptions about breast cancer. She didn't believe in false hope, or that an optimistic outlook would “cure” her. But she wasn't just giving up, either. She had three children, and she wanted time with them. “Cellular biology is King” she once wrote in a poem, “But paired to that fateful ruler I shall be an argumentative, rebellious Queen.”

Lisa also challenged the widespread notion that seeking “alternative” treatments, some of which were hardly distinguishable from predatory quackery, was a good answer. Amidst stereotypes of women as the ones bringing the soft touch, or the “natural”, or balancing the rational with the emotional, she boldly claimed science and rationality for herself as well as the emotional and the beautiful — and did not see anything unnatural in that. She was a mother who loved her three children fiercely, but she wasn't going to fit into boxes in which women and mothers did not trust medical science. She read research, she talked about her treatments with her wonderful oncologist, and she smacked down hard anyone who suggested she consider more Vitamin C or acupuncture, or pomegranate juice as malignant cancer cells spread over her body. (She got such emails and suggestions regularly).

I had started thinking I’d maybe write a paper on patients finding their voice online but the truth was this: I liked her. I started checking her twitter stream daily, and read her blog.

Her love of life and courage was a lesson to me, everyday. She sent out these tweets almost daily, her lessons of life and death.

Lisa’s voice reminded me of existential psychotherapy, a field started by Irving Yalom, who often conducted therapy with terminally ill patients and brought the lessons he learned to general psychotherapy. Yalom had once written that his patients often told him how cancer is wasted on the dying. This wasn’t a wish that everyone get cancer, far from it, but that everyone should strive for insights that spring from our inevitable mortality, to understand what’s truly important in life, and what’s passing and frivolous.

Western culture often hides death, and thus also cheats us of life.

Lisa, and others like her, had taken to social media to defy a culture, which to its own detriment, wanted to wish them away.

During the course of her illness, an unfortunate incident happened, but one which made our paths cross directly. In December of 2013, Lisa was getting palliative treatment, radiation, for her bone metastases, which were causing her pain by pressuring her nerves. Emma Keller, a Guardian author, apparently thought Lisa was in the hospital in search of hopeless and unnecessary treatments, rather than home, in her deathbed. Emma Keller also questioned the wisdom of being so public about dying. I was disturbed. Being public was Lisa’s gift to us, not something to be ashamed of. Besides, and more importantly, Lisa was not on her deathbed — she was getting palliative treatment that would allow her to live pain-free for the remainder of her life. Emma Keller took a lot of criticism for the piece, and that might have been it had not a bizarre incident happened: her husband, Bill Keller, used his own highly-visible New York Times column to double down on the argument, also naming and targeting Lisa Adams.

The Kellers, it seemed, wanted to write about futile end-of-life treatments that do not extend quality or quantity of life, but cost suffering and create unnecessary financial burdens. The point was not one Lisa would disagree with, but they had the wrong person. Lisa’s cancer was then only in her bones, which might cause her pain but would not yet kill her. She could live for another 10 years, as some patients do, if the bone mets did not spread further. Lisa was getting standard treatment for her stage of disease and the problem she faced: pain from pressure on nerves. She did not need two major columns in national media, back-to-back, criticizing her very reasonable medical choices as a symptom of inability to let go at end of life.

I knew that Lisa would loathe the fact that one of her key messages, that palliative care is not just about end-of-life but about quality of life in terminal disease, was getting mangled. Lisa often emphasized how too many people wait till the very end to seek hospice and palliative help, when in fact, early intervention would allow them to make wiser choices, and be in more comfort. I also knew she was in the hospital that week, and without much time or energy to write as the treatment she underwent for the pain was harsh.

So I wrote a blog post explaining Lisa’s points, to be honest, mostly to make her happy. I did not want her key message, one she wrote so much about and dedicated herself to spreading, to be lost. I also wanted it to be clear that Lisa wasn't the correct example for the Kellers’ point. They hadn't spent enough time reading her writings, I realized and I titled my post “social media is a conversation, not a press release”.

That article ended up being fairly widely read, and quoted in a column by New York Times Ombudsman, Margaret Sullivan. Sullivan was responding to reader outrage about how the columnist had doubled down on the heat his wife was taking for a column elsewhere, subjecting someone in hospital undergoing a painful phase to additional burdens. I had done what I could and felt that I needed to do by publishing Lisa’s true message when she was unavailable, but the piece brought me something even more important: until then, I’d been watching Lisa from afar, without interacting. After that, we started talking. She was a sociology major, too, she told me, and she liked reading widely. She was a beautiful writer, and I admired her prose. She told me many kind things about my piece, and she said she was grateful that I explained her message to broader audiences. I was thrilled that she thought I had managed to represent her point correctly in that week when she was too weak to do so. Over time, she became a daily fixture in my life. For the past 14 months, I read her practically daily.

Meanwhile, the treatment that the Kellers had taken her to task for worked. She was pain-free for the next year, if weak. She got to witness many of her children’s milestones. She was so proud that her daughter passed driver’s ed—not an unimportant consideration in a family with two other young children about to lose a parent. Her youngest, now 9, had grown more independent, and had more memories of his mother. She loved being able to leave the door to her room open, and listen to her children laugh at the dinner table. She did not believe in unnecessary treatments that offered little hope but she believed in time with her children while she still could. She prepared “memory boxes” for them, and put their baby pictures and mementos in each. She was always the consummate organizer, reaching out to countless cancer patients on how to manage their own information, and become informed and pro-active about their disease and its treatment. She wrote many many helpful blog posts explaining the nitty-gritty of treatment options, among her poetry. She discussed how to talk to children about impending death. Her writing was often practical, strong yet full of grace. She originated #mondaypleads, urging people to undergo health care appointments that they had put off, and that inspired me to do so. I loved her mix of brains, yearning for beauty, and drive.

Lisa was determined to use time on earth to remind us, daily, that life mattered.

Internet had allowed another marginalized community, the terminally ill, to find their public voice.

And now, standing in an airport terminal in Berlin, the world whirring around me, an email was telling me she had become “popular.”

I started crying before finishing reading the rest of the sentence.

Lisa had been silent on Twitter for many days now, and she had posted on Facebook that the situation was “very, very serious.” I knew she had recently faced liver metastases, and that these were a grave danger to her.

The internet had brought her to me, now it was telling me she was gone.

But she was so looking forward to spring, and her beautiful garden blooming.

My connection to her is one of many relationships that challenge the idea that we cannot form true bonds unless we meet face-to-face. I thought about visiting her but I didn't want to take her time and strength away from her family. Besides, our connection did not feel unreal to me. She was @adamslisa, as she’ll always be. I read her words, and sometimes she read mine. We chatted and laughed. I smiled at her love for her new Corgi, and hoped that she’d again see her garden in full blossom this spring.

It was not to be, though I know I will think of her every time I see a garden in bloom.

Lisa Bonchek Adams, thousands and thousands of people will miss you. You’ve educated, you’ve inspired, and occasionally you’ve smacked down with gusto. And what I needed to do to make the most of my day, today, was to write this to remember you, and let people know your legacy is strong and unbowed. Thank you.

The Message

A Pandaemonium Revolver Collection. Season 2 stars @anildash @alanalevinson @ftrain @hipstercrite @itsthebrandi @jamielaurenkeiles @vijithassar @yungrama @zeynep. Season 1 available on DVD shortly.

Zeynep Tufekci

Written by

Thinking about our tools, ourselves. Assistant prof at UNC iSchool. Princeton CITP fellow, Harvard Berkman faculty associate, Sociology.

The Message

A Pandaemonium Revolver Collection. Season 2 stars @anildash @alanalevinson @ftrain @hipstercrite @itsthebrandi @jamielaurenkeiles @vijithassar @yungrama @zeynep. Season 1 available on DVD shortly.