Lisa Bonchek Adams died over the weekend, at age 45. This is a repost of the letter I wrote to the Guardian, following the publication of an online article about whether it is appropriate or ethical for people with stage IV cancer to use social media to communicate about their illness. Lisa was called out as an example in this article.

I was not a personal friend of Lisa’s but I am very thankful to her for her advocacy. I am very sad about her death and I hope for healthy healing for her friends and family. It will likely be a very long process of grief, especially for her three young children. My hope is that her advocacy and the meaning that it added to her life, will also provide a positive touchstone for them.

My letter, dated 1/12/14,  follows.

Dear Editor,

I am writing in response to Emma Keller’s article, which was published by you on 1/8/2014. The author used Lisa Bonchek Adams, who uses social media to communicate about her life with stage IV breast cancer, as an example of a possible unethical use of social media. I am angry about the journalist’s position as well as how the article stimulated a number of negative comments toward someone who needs no more negativity in her life. I have many objections to this piece and I will delineate a few of them here.

First, I believe in freedom of speech. I also believe in personal and professional responsibility. With all of the corruption and violence in the world, why target a mother of three with stage IV breast cancer, just for using social media to communicate about her experience with a horrible disease? This tact makes no sense at all to me.

I object to the characterization of Ms. Adams’ communication as “TMI”. Journalists cover natural disasters all of the time. They cover earthquakes, famine, hurricanes, and more.  The photos and the written stories describe the devastation that people suffer. They describe the resilience and the heroism. Although not everyone is comfortable with the sadness of these stories, the stories are sympathetic and not considered TMI. Cancer is a kind of natural disaster. It is a disease that ravages and impacts countless numbers of people. Is it TMI because Ms. Adams is reporting on herself instead of being interviewed and photographed by “proper” journalists? If a hurricane survivor decided to get support and communicate about his/her experiences in dealing with a natural disaster, would we call this TMI? Would we as fellow human beings make so many negative comments about this person? I think not.

As a psychologist, I understand that distancing ourselves from an illness that can strike anyone, especially a young mother of three children, is a way we deal with the realities we don’t want to consider. They are too close. We can’t think about potential personal disaster every second of every day and function as healthy people. But it is also true that we can’t constantly deny the possibility of disaster and be healthy people. We have to incorporate potential malady into our lives. Understanding and accepting that bad things happen to good people is a building block of compassion. Without it, we let our own fear lead to unfairly assigning negative qualities to people, who are ill through no fault of their own, and doing their very best to manage under truly difficult circumstances.

As a breast cancer survivor, I understand how cancer has changed my life and my relationship with the outside world. I don’t know why I got breast cancer. I am a responsible person, a loving wife and mother, and a professional dedicated to improving the lives of children. I don’t know that I will have a recurrence. I am doing my best to live a healthy life but there is no guarantee that cancer, some other disease, violence, or an accident will end my life. I could say that it’s not fair that I got breast cancer and have had to endure its treatment, which even in this day and age, is brutal. Breast cancer, like a hurricane, is not fair. It is a natural disaster. People afflicted deserve compassion. We live with cancer and its threats in one way or another, every day.

I am also an active blogger about my own breast cancer experience. In doing so, I have enriched my life immeasurably in having made connections with wonderful people such as Ms. Adams. Having cancer is very isolating. It creates a juxtaposition of grief with a deep appreciation of the gift of life, which many people don’t understand. And there are aspects of breast cancer that make it particularly isolating. The breast cancer social media community is a very powerful network of women and men. I have drawn strength through the true friendships that I have made as well as the support of an amazing group of people, who live all over the world.

We will all die. Most of us do not know precisely when or how this will occur. People with stage IV cancer know that they are likely relatively near the end of their lives and that further they are likely to die from cancer. So many people with terminal disease spend their last years in isolation, even if when they are still able to work and carry out many daily responsibilities. Many of them don’t even “look sick” until much later in their disease progression. But their lives can be lonely and arduous. Social media can serve as a way for people to connect with others who understand. I have friends with stage IV breast cancer. I don’t know how much longer they will live or how much longer I will live. But I know that I will stay with them even through the cybersphere until our dying days. I so appreciate learning how to be a better friend to someone who is losing abilities while respecting their humanity and resilience. It is scary to know that I will likely lose more friends than I would have as a function of being part of the breast cancer community. But it is worse to think of us not having each other; there is real joy, love, and shared grief over the Internet. I consider it an honor to be trusted as a friend and to be relied upon to be there during the darkest times.

There are a lot of problems with our electronic age. Many products aimed at children, in particular, are harmful. There is nothing “virtual” about the breast cancer community. It is very real. Lisa Bonchek Adams is a real woman with real connections. This community is one of the very best and real things about our virtual age.

Thank you for your kind attention to my concerns.

Sincerely,

Elizabeth P. MacKenzie, Ph.D.