A mid-January 2014 storm of reaction to posts in The Guardian and The New York Times about a prominent breast cancer blogger took me by surprise. As a nurse and a breast cancer blogger myself I wondered why the reactions were so strong. My conclusion was that it is because blogging while living with an ultimately terminal disease challenges society's thinking about death and dying. People with metastatic disease live longer these days, and as nurses we should be creative in finding ways to support them in their social needs.
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During the second week of January 2014, there was a small Internet storm regarding blog posts written by Emma and Bill Keller for The Guardian and The New York Times, respectively. The Kellers wrote about Lisa Bonchek Adams, a very well-known breast cancer blogger who last year was diagnosed with Stage IV disease after having been in remission for over five years.
Ms. Adams tweets and blogs frequently about her day-to-day experience as a forty-something mother of three young children who also has metastatic breast cancer. The Kellers' posts came across to most people as very negative, as labeling Adams' social media activity as poor taste, TMI (too much information, over-sharing) and undignified, and as comparing her readers to gawkers at a car accident. Emma Keller wrote: "Should there be boundaries in this kind of experience? Is there such a thing as TMI? Are [Lisa Adams'] tweets a grim equivalent of deathbed selfies, one step further than funeral selfies? Why am I so obsessed?"
In addition to being a health care professional, I am also a Stage IV breast cancer patient, and I publish a blog about my experience, so I followed the developments closely. I tried to understand why such strong negative feelings had been aroused and why I was reacting to them so strongly.
Then it came to me. Those of us who use social media to talk about our life with terminal illness are defying categories. Social media is supposed to be for active people who eat in restaurants and play with their pets and attend sporting events and go to professional conferences, right? People with terminal illness are supposed to rest quietly in darkened rooms or lie sighing on a chaise longue on the porch or smile bravely as they murmur a few words to their nearest and dearest, right?
Perhaps the discomfort expressed in the Kellers' posts is a reflection of society's discomfort with death and dying? People like Lisa, people like me, cause discomfort to some because we bring our experience out of the sickroom and into the full light of day. We cause discomfort to some because we are living, living with full knowledge of our impending death, living in pain and with disability, but living as fully as we can while we are dying.
People like me write because we are writers. Should we stop writing just because we are nearing the end of life? Should we forego the social interaction that is made so difficult by our physical condition but is facilitated through the new media? Should we lock ourselves away in a figurative darkened room so as not to chance disturbing the hale and hearty with thoughts of death? This is a social issue and an eschatological question (in the larger sense). Our writing is an expression of our humanness, of our being as a social animal.
Nurses support and encourage physical, mental, emotional and spiritual wellness. The phenomenon of some people living for several years with metastatic cancer is relatively new, and it brings with it new challenges. Advocating for our patients in terms of pain control, ADL support, cognitive support and spiritual needs is part of our training and our traditional role. Perhaps we need to look at new and creative ways to advocate for our patients' social needs, as well.
