I had lunch with my brother in the cemetery the other day; he was uncharacteristically quiet, he’s not much of a conversationalist these days. I suppose death does that to you. He died 19 years ago from colon cancer due to Lynch syndrome at the age of 36. He left behind an 8-month-old baby girl and his wife. Most of his young life was difficult; he endured countless beatings from our father and left home at 18 to join the military in order to get as far away from our dysfunctional home. He was the apple of my mother’s eye; he stood at 6’5 – he was larger than life and had the personality to match it. He was an extraordinary mathematician, juggler, storyteller, and had a heart of gold. We had our moments – but the last 3 years of his life he realized how similar he and I were in comparison to other family members and he became to appreciate that; we became closer and would talk religiously on the phone. Whenever he had a call to make in Chicago for business, he would make it a point to come and see me.
When he diagnosed with his terminal colon cancer, it was highly difficult for me to wrap my 24-year-old head around it. He would be the third close family member to die within 15 years. My Mother in 1980, my father in ’92 and then Jimmy, in ’95. It took me a long time to reconcile his death — I had horrible nightmares for years of my teeth falling out; elephants being killed in my backyard whilst their babies cried at their sides, and all kinds of other bizarre death related nightmares. His death also brought up issues which I failed to deal with in regards to my Mother’s death; I was grieving the loss of the two people who championed for me most in this life. After much therapy and time, I eventually came to terms with my brother’s death — until I was diagnosed with Lynch syndrome.
As I sat in the cemetery the other day, I thought about the enormous sense of survivor guilt I hold. Questions such as: “Why him and not me?” and “Why, why, why?” emerged. It would have made more sense if the universe was in dire need of dead souls to take me; I had no spouse, no child at that time. My life lacked purpose, I had no responsibilities. But that is not how it happened. I’m not the only person with Lynch syndrome who feels this way. Many of us have lost parents, siblings, even children and yes; many of us have tremendous survivor guilt as a result. What does one do with this guilt? And can we turn it into something positive?
So for the past 3.5 years his death has taken on a new significance in my life; it fuels my advocacy efforts for Lynch syndrome. I don’t 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. I feel this unrelenting desire to increase Lynch syndrome awareness rather than participating in the ostrich effect – otherwise known as burying one’s head in the sand. My advocacy includes writing for this blog, other sites, increasing awareness for Lynch syndrome, colon cancer, and other hereditary cancers on various forms of social media and talking to newly diagnosed Lynch + people. I am on the committee for The Hereditary Colon Cancer Foundation and collaborate with other colon cancer foundations to help them as much as I can. I encourage others to seek genetic testing for most syndromes, taking preventative measures for good health, and encourage annual screenings for Lynch syndrome related cancers.
Writing about Lynch syndrome has been very cathartic for me and has enabled me to come to terms with the diagnosis. Whilst at the same time, it has given others tremendous insight into the world of Lynch syndrome, the emotional implications of genetic testing, and a plethora of other issues which besiege this type of diagnosis. This blog has evolved tremendously since it began two years ago; in order for it to continuing doing so, I am taking a little break for the next few weeks in order to tap into my creativity and to figure out my next steps.
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One more thing; The University of Michigan is having a conference next month on 10/11/14 entitled:
Empower Yourself: Updates on Lynch Syndrome, FAP and Familial Colon Cancer
I will be there on the panel discussing the emotional aspects of having Lynch syndrome. Please click on the link below for more information. I hope to see you all there!
Hope you’re all well and nourishing yourselves.