Whenever I thought about my brother and his death, I used to feel tremendous survivor's guilt. He never knew he had Lynch syndrome when he was diagnosed with colon cancer.
Georgia Hurst is a patient advocate for those with Lynch syndrome. She has the MLH1 mutation and fortunately has never had any cancer. She is the co-creator of #GenCSM (Genetic Cancer Social Media) on Twitter, and her advocacy work has afforded her opportunities to write for medical journals, various websites and genetic testing companies, as well as collaborate as a stakeholder for the National Academy of Sciences: Genomics and Population Health Collaborative. Her loves include: her son, her dog, books, photography, long walks in the woods, and seeking out fungi after the rain. Her motto is: "There is enough misery in the world – there’s no need to contribute to it.”
My brother Jimmy would have turned 60 this month. He died over two decades ago from colon cancer due to Lynch syndrome at the age of 36. When he diagnosed with terminal colon cancer, it was highly difficult for me to wrap my 24-year-old head around it because sibling relationships are usually the longest-lasting and closest ties of our lives. I learned at a young age that time was precious, and death does not discriminate.
It took me a long time to reconcile his death, but with the passage of time, I eventually came to terms with it – until I was diagnosed with Lynch syndrome in 2011. Whenever I thought about my brother and his death, I used to feel tremendous survivor's guilt. He never knew he had Lynch syndrome when he was diagnosed with colon cancer. When my second brother discovered he had colon cancer eight years ago, his physician was struck by our remarkable family medical history of it and suggested he be genetically tested. I was given an unwarranted cosmic advantage over my brothers; genetic testing, prior to developing cancer, confirmed that I, too, have Lynch, but gave me an opportunity to take preventative measures, or at least diagnose cancer during its early stages when it's most treatable.
What does one do with survivor's guilt? And how can we turn it into something positive? I had to do something. For the past several years, Jimmy's death took on a new significance in my life; I could not let his death be in vain. I do not want anyone else to experience the hells of colon cancer or any other Lynch syndrome-related cancer and the assortment of issues which surround them. Lynch syndrome was hardly discussed eight years ago – anywhere.
I saw a huge void online and tried to fill it. I began a blog, writing about losing my brother, having prophylactic surgeries and talking to and assisting people with Lynch syndrome. I connected with other great advocates who could help me raise awareness. I learned all I could about hereditary cancer syndromes and co-created #GenCSM (Genetic Cancer Social Media) with Amy Byer Shainman (@BRCAResponder) and Ellen Matloff (@MyGeneCounsel) to shed light onto all hereditary cancer syndromes. #GenCSM is part of the Cancer Tag Ontology Project on Twitter, meaning it is deemed as a valuable source of information.
Writing became my catharsis. As a result of it and my outreach, the nonprofit ihavelynchsyndrome.org emerged and was quite successful for a few years. But all good things must come to an end. The nonprofit's future seemed bleak after the current political administration took over. Many who supported the nonprofit ceased funding due to all the political uncertainty surround genetic testing and preexisting conditions. Unfortunately, some people who reached out to me with Lynch syndrome were furious at the prospect of losing their Affordable Care Act (ACA), while failing to realize that the ACA and Obamacare were one in the same and, in turn, casted their votes against Obamacare. It became increasingly difficult to assist people who voted against their own interests. It was time to let the nonprofit go and figure out a way to continue advocacy efforts on a different scale.
Channeling negative energy into something positive can help one with survivor's guilt. When I think of Jimmy now, I use his short life as a metric for my own. His death influences many of my personal decisions, especially those which surround my son. Whenever I am uncertain of something, I ask myself: "What would Jimmy do?" and then I move forward from there. I try and provide my son with opportunities that Jimmy never had. I cannot think of a better way to honor him.