I should know better than to check my Twitter stream just as I’m waking up. This am, around 6 or so, I awoke as soon as my husband’s alarm sounded, since he was headed to a study at the hospital my uni is associated with. Hon has had a series of health issues and he was getting a check on it. We usually wake up around 8am. But since his appointment started at 8, we had to get a head start. I guess I wanted to see what was new in the world. And then I found that two people I didn’t know had written some harsh words (to put it mildly) regarding Lisa B Adams’ journey with cancer. That was enough to have me wide awake after the alarm sounded.
I started checking the streams of Xeni Jardin, of Ed Yong, Deborah Blum and others, and was simply appalled that someone would write such seriously stupid comments regarding how another person decides to handle (and share) their journey with cancer.
My first reaction was rage! How dare they do that? Then it morphed into pity and disgust.
Now I wonder, why the Kellers decided to wirte about another person’s journey through the devastation that cancer is, especially since they’ve been affected by it so closely. I wondered if perhaps Emma’s own journey with cancer and her father’s death had prompted the reaction. Or worse, whether someone had had the gull to refer to her or her dad as weak, for choosing a different path to death than what Lisa Adams has chosen. It seems to me that perhaps that could explain (I know, this is weird), their reaction to Lisa’s sharing (or in the Keller’s views, over sharing) her daily struggles with metastatic cancer.
A bit of “over sharing”: in early spring of 2013, my dearest friend from college, someone I’d known since 1995, died of brain cancer. What started as a non life-threatening mass in her brain, quickly morphed into cancer. She had at least 3 surgeries, she lost all her hair twice, had 2 scars in her skull, was going to be taking medicines for the rest of her life to treat some of the effects of having a mass so close to her pituitary, but kept a smiling face through it all. We never cried together, whether in person or over the phone, she never complained. She just did what she thought would prolong her life, and did it with a smile. Then in 2012, as I was getting the news that I’d be moving again to grad school city, another friend called to tell me that her cancer may be terminal, but she wasn’t telling anyone yet. I respected my friend’s decision and didn’t prod or ask, I just let her be. I called her for the last time on December of 2012. That was the last time we talked. I didn’t call her for her birthday, or to find out how things we going. She died in May. She’d made the conscious decision to stop taking medication once it was obvious it wasn’t doing anything. She agonized, she died. A smile left on her face.
Every cancer patient and their families is unique. Cancer is a very, very complicated disease, with many complicating factors, things that as scientists we still don’t know, to treat every patient and their reaction in the same way. My issue with the Keller’s is their criticism of how Lisa and her family deal with and live with her diagnosis. My deal with them is that I feel they should know better, especially having lived through cancer in one case and having lost a loved one in another way.
It still baffles me that people try to mansplain their way out of it. It still baffles me that cancer patients are seen as warriors and heroes, instead of human beings, with thoughts, families, experiences. It reduces their pain, it minimizes their suffering, it creates division.
I am no one to say to the Kellers that their father was a coward because of his CHOICE to stop treatment and die … the same way that my friend decided to stop treatment and die. I am no one to criticize Lisa for how she deals with her diagnosis and treatment. I am no one to determine whether an insurance company, a hospital or a volunteer is providing therapy dogs (or llamas) to her or anyone living with metastatic cancer.
The Kellers are free to write as they want. But they should also realize that this is 2014. Mansplaining and calling into question how someone decided to handle their disease and live with it are SO out of date (they were never in fashion to begin with). And while it is fine for them to ask questions, the way in which their editorials tried to start a conversation … well, it just imploded.
And while I am all for freedom of press and for not censoring things … sometimes what you write in what could have been a moment of frustration, or a moment in which you were dealing with your own loss, can make you look like an ass in front of a very, very large audience.
My dear friend S was a hero in a way. She was always independent, took decisions with care and took advice from her doctors and family. She thought about things and weighted the evidence and decided, on her own terms how to respond. That’s not what makes her a sort of hero. What makes her a hero is her capacity to love, to accept, to not condemn, to smile and joke, to be a wonderful source of calm in the midst of my thesis, or when my heart was broken (and she wanted to give my ex a swift kick in the nuts). But her battle with cancer was hers and hers alone. Who am I to judge her for not staying with me longer? I am no one. I love her and miss her, regardless of her decision. I miss her and always will, but I am no one to condemn how she lived, how she reacted and what she chose to share so other could learn from her and her disease.