Illness vs. Death – From Both Sides of the Coin

Adelle - Campbell, California
Entered on March 16, 2015
Themes: fear
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At one point I found myself imagining it was cancer.

Fantasizing it was cancer.

I’d rather die of cancer than this.

Up until the age of 40, I was able to live and make decisions as if I had a full life to live. I began a career, and then another. I married, I had a child, and then another. I worked and mothered and lived a fairly normal life. Yet, throughout those relatively happy years, there was always another presence. Creeping from the distance, growing gradually larger and more ominous, until finally, right around my 40th birthday, it parked overhead like a massive alien warship, blocking out the sun and waiting. The life I have known may be nearly over. I can’t ignore my genetic code any longer.

My mother was gone before the age of 45. The gentle, loving and charming woman she had been replaced by paranoia, anger, and neurological deterioration. She was dead at the age of 57. Robbed of everything a parent expects and deserves to experience once their children are grown – travel and freedom. Grandchildren. Retirement. She had none of it, and we had none of her.

Like her mother before her, she died of Huntington’s Disease – a cruel, ugly cousin of Alzheimer’s and Parkinson’s. A triple-threat demon of mental illness, dementia, and disability stemming from a mutated strand of DNA passed from parent to child. As with all of our genes, we begin with two sets, one from each of our parents. There’s 50/50 chance I’ve inherited my mother’s Huntington’s gene.

This was an inheritance I always knew could potentially be mine. I finally scheduled the genetic screen that would confirm the threat, or eliminate it forever.

Considering what emotional damage came to me via the 12 years of my mother’s illness, I’ve had to consider what my diagnosis and subsequent illness would do to my own children. Two boys, born to me in my 30’s. I was an adult when I lost my mother. If I’ve inherited her disease, they will still be children.

I entertained all my options. Were the results positive, would I consider suicide? Which would be worse for my family, truly? Losing a wife and mother abruptly, albeit by her own hand, or the long, drawn-out chaos of this disease? I considered whether taking my own life sooner than later would mitigate my family’s suffering.

For no matter what, if I have inherited Huntington’s Disease…they will suffer.

Would my children be better off with no mother, or whatever bits of their mother are left over? Would I have chosen to rid myself of the last 12 years of my own mother’s life? Would her early death have saved me any anguish in the end?

Unlike others who face this same crisis, I have seen both sides of the coin – caregiver and patient. I know that there will be suffering, but I believe life has value, in whatever state – sane, insane, or disabled. I have witnessed this truth: something is better than nothing.

Suicide is not my answer. Taking my life into my own hands has never been my compass. I believe that with God, all things are possible. As such, if everything is possible with God, then I choose to believe in a positive outcome…regardless of the results of this genetic test.

In that choice to believe comes hope, and with hope a scrap of courage on which I now stand and face my future without fear.

Regardless of what my DNA might say.