Dealing with Survivor's Guilt
December 26, 2018 – Georgia Hurst
So You Can Know for the Next Time
December 22, 2018 – Sarah DeBord
After a Cancer Diagnosis, How Do We Measure Our Lives?
December 21, 2018 – Khevin Barnes
The Role of Music in My Life with Cancer
December 20, 2018 – Ryan Hamner
The Hand We Are Dealt
December 20, 2018 – Dana Stewart
Living in the Land of the Healthy
December 19, 2018 – Samira Rajabi
Finding Forgiveness For Cancer-Related Missteps
December 18, 2018 – Justin Birckbichler
Rest is Good Medicine
December 17, 2018 – Bonnie Annis
Giving Your Provider the Pink Slip
December 17, 2018 – Sarah DeBord
Embrace Cancer Roadblocks
December 14, 2018 – Dana Stewart

Lynch Syndrome and Death Anxiety

When I was diagnosed with a hereditary cancer syndrome, I had feelings of death anxiety.
PUBLISHED December 11, 2018

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.”

When I was diagnosed with a hereditary cancer syndrome, I had some degree of death anxiety. For some, this death anxiety can be more pronounced if one has witnessed the death of a loved one firsthand, especially if this death is the result of a hereditary cancer syndrome. We are all going to die – no question about it. It's just a matter of when and how.

But I can’t help but to have death on the forefront of my mind more so than most. I have a tendency to magnify simple things that plague me daily. When I have a headache, I think I have a brain tumor. If my belly hurts, I wonder if colon cancer has come. And when other people with Lynch-related cancers die, whether they are relatives or others, I cannot help but wonder if I will be next.

In order to understand death anxiety better, I read a great book by Irvin D. Yalom entitled: Staring at the Sun: Overcoming the Terror of Death. Yalom discusses the many fine points brought up by existentialist novelist/thinkers, specifically Milan Kundera, who believes that the most terrifying aspect of death is not loss of the future, but rather the loss of the past. Yalom also mentions Freud, Tolstoy, Epicurus and many others who have provided us with many insightful positions of life, death and the struggles we fight when dealing with our mortality.

Yalom describes who is typically afflicted with death anxiety. They tend to be individuals, "whose family and culture have failed to knit the proper protective clothing for them to withstand the icy chill of mortality. They might have encountered too much death at too early of a stage of life; they may have failed to experience a center of love, caring, and safety in their home; they may have been isolated individuals who never shared their mortal concerns; they may have been hypersensitive particularly self-aware individuals who have rejected the comfort of death-denying religious myths proffered by their culture."

This paragraph resonated with me as I have experienced every single one of those things. No wonder I was initially petrified when I discovered I have Lynch syndrome. Losing my mother when I was a child, and being raised by my father who was sick with alcoholism and ill-equipped to care for me, was exceptionally difficult and challenging.

Death anxiety may also stem from thoughts of leaving family, specifically young children, behind. Since I lost my parent when I was a child, I tend to project my emotions, fears and mindset onto what my son may feel once I am gone. I fail to think rationally when it comes to my child, but in the end, with time, I am reminded that most children tend to be OK after the death of a parent. Teaching my son everything I can to become a self-sufficient adult and taking precautions such as having a life insurance policy and a will specifying guardianship over my son has been helpful in lessening some of my anxieties.

One thing is for sure: being godless does not really help my death anxiety. In fact, it probably makes it worse. There's nothing comforting about death in my mind. It's the end. A fait accompli. I die, I have a green burial and I organically decompose back into the Earth in order to nourish Her and Her remaining creatures. I basically become food for worms, beetles, flies, maggots, etc. There’s no eternal life for me – at least not in the biblical sense. I like to believe that I will live on through my son and those whom I've touched throughout my life, or at least I hope so, and maybe through the tree which will be planted above me. Within 100 years or sooner, I will be completely forgotten. Yes, I know, that in and of itself is depressing.

When someone with a Lynch-related cancer dies, my optimism regarding my situation is tested and wanes. I try and live every day as if it were my last. I try and spend more quality time with those I love and give them small tokens, or words, or of my affection. I live as well as I can, and more importantly, I try to live with no regrets. I remind myself that the most important thing one can do with Lynch syndrome is to be vigilant with their medical screenings and I am on top of it. I wonder if my genetics will simply trump all the good things I do to live a healthy life…and then, eventually, I realize that everyone's time is limited and precious and therefore I must make the most of mine until it's my turn to die.


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