As part of an elective at MIT entitled Leading Profound Innovation for a More Sustainable World, we were asked to conduct what our Professor referred to as an Empathy Walk, where you spend some time finding a person who lives in a world that is most different from the one we are in. The goals is to spend a few hours getting to know them to try and get into that person’s world enough to get a feel for what it would be like to be in their shoes.
For this exercise I paired up with Allan Jaenicke. I had not met Allan before the start of this course. He is a second-year MBA student, and I am a Sloan Fellow. We are both males. We decided to meet with Alicia Staley, a breast cancer survivor who underwent a double mastectomy in 2007. We wanted to understand what it was like for a young, intelligent woman with the world as her oyster to be diagnosed with cancer in the prime of her life, and what it felt to lose a part of her body while living in a world increasingly fixated with beauty and superficiality.
At the beginning of this week, I didn’t even know Alicia existed. I was invited to attend a conference in Boston called #140char – a series of day-long conferences held around the country and organized by Jeff Pulver, one of the founders of Vonage and an early investor in Twitter. The conferences are themed around the capabilities of the real-time web and how social communities are harnessing the power of the Twitter platform to listen, connect, share and engage with each other. Alicia was one of 40 speakers that day, and she was invited to come and speak about her experiences as a three-time cancer survivor and how she is now using Twitter as a crowdsourcing tool for cancer survivors, to help them build community and find solutions for everyday challenges.
As she got on stage and introduced herself, you immediately felt her presence. She tried in vain to hold back tears as she explained how it had been a particularly challenging few days for her. She had lost two close friends to cancer in the past forty-eight hours. She went on to talk about the advocacy work she is now dedicated to and how building a Twitter-based community has allowed cancer survivors like herself connect with each other, share stories and be a source of strength and inspiration for each other. The community also includes physicians and healthcare experts, who respond to Tweets when members post issues they are facing. In a recent example, someone undergoing rounds of chemotherapy complained that none of the well-known techniques to address the terrible mouth sores that result were working for her. Alicia re-Tweeted the message to her network, and in a matter of a few minutes, the Tweet had been relayed across many networks and Alicia received over twenty responses including one that worked which involved a novel use of honey.
Allan and I asked to spend a few hours with her a day after the conference to better understand her experiences and to try and go beyond the typical empathetic response that many of us have to cancer victims, and try to understand her experience on a deeper level that most males would not perhaps appreciate or have the inclination to understand unless the sufferer was someone close to them.
“I've had Hodgkin's disease once, Breast Cancer twice. I was a 20 year old college sophomore, fighting my way through cancer the first time. To diagnose the Hodgkin's, I had every major organ in my abdominal region biopsied, a section of my hip removed, my spleen removed, and for good measure, I let the doctors take out my appendix too. To treat the Hodgkin’s, I had 18 weeks of radiation and 9 rounds of chemo therapy. My chemo regime had 4 drugs. I still have 21 little blue radiation tattoos used to mark the radiation field on my body. I lost all my hair and lost a ton of weight. It took close to 3 years to battle through the Hodgkin’s.
At the age of 33, I was diagnosed with breast cancer for the first time. I had one lumpectomy and 5 intense days of Mammosite Radiation. For two years, I dealt with horrific side effects from “the anticancer drug” Tamoxifen – dry eyes, night sweats, bone pain, weight gain, migraines, insomnia, fevers… Sometimes, the cure is worse than the disease. In November 2007, I was diagnosed with breast cancer for a second time and I opted for major surgery - a double mastectomy. I had my thyroid removed during that surgery too. In January 2009, I dealt with another cancer scare - fortunately, it was only a scare! I still need surgery to remove a mass in my abdominal region, but thankfully, I have not needed any more treatment.
In total, I've had 3 separate courses of radiation, 1 course of chemo, 9 major surgeries, and 1 bone marrow biopsy. Whew… I'm walking proof that super glue and duct tape works wonders.
But in case you want to know... I can still hit a golf ball 250 yards on a good day... bad day, maybe 235.”
But in case you want to know... I can still hit a golf ball 250 yards on a good day... bad day, maybe 235.”
One of the most surprising things about Alicia, is that for a three-time cancer survivor she is amazingly driven and passionate about raising awareness about breast cancer. She talks about the current trend of slactivism – the shortcut way to raising awareness about a cause that you might feel connected to, which drives you to update your Facebook status or send out a Tweet. It serves no real purpose other than to make a person feel good about themselves and think that they’re “raising awareness” but it rarely results in any lasting change. While working a regular job as a systems analyst, Alicia also runs a Foundation and was recently appointed to the Board at Tufts Medical Center (where she has been a patient for the past fourteen years). The Foundation helps current survivors with expenses that medical insurance doesn’t cover and people often overlook – such as parking (patients at Boston hospitals still have to pay to park their cars when receiving treatment, often for 30-40 hours at a time!) or childcare.
One of the things I will remember most about my meeting with Alicia is the immense feeling of energy and positivity I felt when spending time with her. As she would say, once you have survived cancer you experience “happiness that’s so strong that it aches” and how “every day is a bonus”. Why is it that human beings who have really fought hard to stay healthy seem to be so much more driven to lead meaningful lives than others? Why do people who have battled hard to retain life go on to find a sense of purpose in their lives much more easily than others who not even faced a fraction of those challenges?
When Alicia was still in college and battling Hodgkins, her mother cut out and gave her an article from Self Magazine written by Linda Ellerbee, an NBC presenter and reporter on the Today Show and cancer survivor herself. Linda wrote how a fan once praised her for being so courageous, she replied “if you define getting out of bed and putting one foot in front of the other as courageous, then yes, I’m courageous”. Years later when Alicia was battling with breast cancer for the second time, she wrote a blog entry and cited Linda’s article. The blog was forwarded through different online networks and communities, and to her surprise within a matter of hours, she received an email from none other than Linda herself! Shortly thereafter they had their first phone conversation and now hope to meet in person sometime next year. So many years after Alicia’s mother first saved that magazine cutting, who would have guessed that they’d end up connecting in person and exchanging survivor stories.
Life plays out in unexpected ways.
It seems that with all our gadgets, mod-cons and conveniences, for most of us life has become so easy that it has lost its true value. It takes meetings with people like Alicia to remind us of how precious life is, and how much happiness can be found in our everyday existence if we chose to appreciate every new day for the blessing that it is.
