Inheriting Lynch syndrome from an abusive parent can significantly impact how we view our situation and may occasionally fuel our resentment towards that parent. It’s not easy for some of us to just “live life” and “be happy” knowing we inherited Lynch syndrome from an abusive parent – some days are more challenging than others. I know I’m not the only one in this world who feels this way and this is why I am writing about it.
Through my observations on Lynch syndrome social media platforms, it seems to me that those who inherit this from a parent with whom they have had a good relationship tend to deal with the Lynch diagnosis much better than those of us who have had poor relationships with that parent. There are reasons for this: the “good” parent will often acknowledge that the are sorry for unknowingly passing this on, they are able to provide emotional support to their adult children, occasionally the adult child can be somewhat consoled by their parents during moments of great uncertainty, and the parents seem to be highly involved in their adult child’s medical affairs.
One of the greatest challenges I have had to reconcile is the fact that I inherited this horrific mutation from my father; a man who emotionally neglected and abused me for the first 18 years of my life. He died from cirrhosis of the liver in 1992 due to his alcoholism; not from a Lynch syndrome related cancer. He had colon cancer when he was in his 40’s and managed to survive cancer-free for 30+ more years in an alcoholic fog. The mental abuse I endured as a child, especially after my Mother died when I was 9, had profoundly affected my being and I spent years trying to nourish and love that little girl who was neglected not only by my biological father but by the rest of my family as well.
My siblings were all much older and were out of the house soon after Mom died. My father was the typical alcoholic: when he wasn’t rendered unconscious on the kitchen floor from his copious consumption of whiskey, he was unpredictable, unloving, uncaring, explosive, and verbally abusive. I was constantly walking on eggshells around him. Nothing I did was ever good enough. I was never smart enough, pretty enough, or “anything” enough for him. He was critical, judgmental, angry, and could never see the positive in anything; as far as he was concerned I possessed no redeeming qualities. He annihilated any self-esteem my Mother was able to instill in me in my 9 short years with her. My life included a constant, high level of uncertainty and fear, without any biological family support.
I tried hard to please my father for many years. I was a good kid with stellar grades until sophomore year when my anger towards my father and family finally emerged – it was then when I found my voice and starting fighting back at him and them; I became a rebel. I became a product of my dysfunctional environment and acted out in several ways. I became the “bad” child, which only furthered fuel the fires of family dysfunction and my father’s alcoholism. I was left to fend for myself as my pleas for help from them were ignored. I suppose they had had their share of misery from him and just didn’t want to be bothered with my issues but at least they had my Mother and each other for support. I had no one but myself until I met my best friend Jennifer in high school, and then her parents — Jim and Jane; they would eventually become my “second set of parents” – I would not be here today if it were not for them because they managed to dismantle the downward spiral I was hell bent on spinning on.
Jim and Jane taught me that I had to take responsibility for my life and do the best that I could with what little I had. I moved away at 18 to another state and started fresh. When my biological father died in 1992, I tried to bury the negative feelings I had towards him when we put him in the grave. I never mourned him, I mourned and grieved for the biological father I never had or deserved. A few months following his death I ended up back in Chicago and managed to put myself through school and then finally met a wonderful man who would become my husband and the father to our beautiful son. Life was looking up for me and I was finally letting go of my past and appreciating the good things that were happening. Several years passed and I had finally achieved happiness even though the majority of the ties to my biological family had come undone. Then my brother, who religiously ignored my pleas to get frequent colonoscopies, got colon cancer at 48. Six months later, the cancer returned and that is when his doctor suggested he be tested for Lynch syndrome and this is how I discovered that I, too, hold the mutation.
My brother lost his entire colon and not long after that, I reluctantly gave up my reproductive organs at 40. This in turn held all kinds of horrific, hellacious negative implications for me. In my mind, my father still had this grotesque ability to abuse me from the grave. He lives on in me through this horrendous mutation, which I may have unknowingly passed onto my little boy. Removing my reproductive organs, specifically my ovaries, has held significant emotional and physical negative implications for me. My father emotionally raped me on so many levels throughout my childhood; in death he managed to pilfer me of my femininity – I feel tremendously defeminized as a result of the removal of my ovaries. I may have prevented cancer to my reproductive organs but it was done at a significant cost to my emotional and physical well-being. I am not the same person I was before my diagnosis. I am not the same woman I was before the diagnosis.
Lynch syndrome destroyed the final vestige of my biological family – the relationship with my brother, with whom I share this charming mutation. But in all honestly, the lack of connection has brought me much needed solace. He has his own mountain of challenges to deal with and I’m not interested in contributing to them. I wish him well and peace.
I try very hard to make vodka lemonade out of the lemons life has thrown my way and some days it’s much easier to do than others. My second set of parents, Jim and Jane, have been instrumental in my emotional evolution; they paved the way for me to become a strong, resilient, loving, caring woman. They are the parents I believe I was meant to have; their unwavering love and support for me over the past 30 years has been has carried me through the most difficult times of my life and I am forever grateful to them. They make up for what I lack in biological ties and I am exceptionally fortunate to have them; I wish every orphan out there had exact replicas of Mom and Dad to compensate for what their families failed to or were unable to give them.
I talk to others who are Lynch+ who tell me they were abandoned or abused by the parents who passed Lynch syndrome onto them and how alone they feel as a result. I try to be a pillar of hope, love, and inspiration for many people, especially to them. Please know that you are not alone. I am always a phone call away if you just want someone to listen to you. Try and focus on the many things you have to be grateful for and remember that you have more power over your destiny as an adult than you did as a child. Your abusive parent(s) should have taught you a tremendous lessen; they taught you exactly who you do not want to be.
Here is a beautiful picture of my Mom, Dad, and son last week in St. Louis. They are all the embodiment of love and happiness; I am so grateful that my son has the privilege of having such wonderful Grandparents in his life.
Forgive others, not because they deserve forgiveness, but because you deserve peace. -Unknown
This post is dedicated to Maria Ostling who continues to inspire me, encourage me, and support my advocacy efforts. I love you, Maria.