My father was an alcoholic, and though he died in 1992, he lives on through my siblings and me because we all inherited a cancer syndrome from him.
One of the most significant challenges I have had to reconcile over the past decade is that I inherited Lynch syndrome from my abusive father. He had colon cancer when he was in his 40s, before my birth, and managed to survive cancer free for another 30-plus years until he died from cirrhosis of the liver in 1992.
Sadly, I had a fragmented relationship with him because of his alcoholism. He emotionally neglected and abused my siblings and me. His alcoholism worsened when my mother died suddenly in 1980. I was only 9 years old. My father was unpredictable, unloving, uncaring, explosive and verbally abusive. He was critical, judgmental and angry and could never see the positive in anything. We constantly walked on eggshells around him. Nothing we did was ever good enough.
My childhood after my mother’s death included a constant, high level of uncertainty and fear without much family support. I was a good kid with stellar grades until my sophomore year of high school when my anger toward my father and family finally emerged. I found my voice and became a rebel. I became a product of my dysfunctional environment and acted out. I was left to fend for myself; my pleas for help from my siblings were often ignored. I suppose they had had their share of misery from him and did not want to be bothered. I had only myself.
I moved away at age 18 to another state and started fresh. When my father died in 1992, I wept and grieved for the father I never had or deserved. My father managed to continue the emotional pillaging from the grave, though we did not realize it. I ended up back in Chicago and was stunned to learn that my eldest brother had been diagnosed with advanced colorectal cancer, though at the time we did not know it was Lynch related. He died in 1995 at 36.
Eventually, life was looking up for me, and I finally let go of my past and appreciated the good things happening. I managed to put myself through school, and after taking some biology and genetics courses, I knew there must be a genetic component to colon cancer within my family. I eventually met a man who would become my husband and the father to our beautiful son. Several years passed and I believed I had finally found some happiness. Then my other brother got colon cancer at 48. Six months later, cancer returned, and that is when his doctor suggested that he and I test for Lynch syndrome. This is how I discovered that I, too, carry the mutation.
My brother lost his entire colon and not long after, it was strongly recommended that I have my reproductive organs removed to prevent cancer. I reluctantly gave them up, which held all kinds of horrific, hellacious, negative implications for me. My father lives on through this horrendous mutation, not to mention that the removal of my reproductive organs held enormous implications for my well-being and femininity. But knowing that I may have unknowingly passed Lynch syndrome to my son has been the most challenging aspect of having the genetic condition. It has taken years to reconcile the toll this has taken. My son is still a teenager and has yet to see a genetic counselor and undergo genetic testing.
Over the years as a patient advocate, I have spoken with others with Lynch who were abandoned or abused by the parent from whom they inherited the syndrome. Living with Lynch is not easy under the best of circumstances, but it is even more challenging when it is inherited from an abusive parent.
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