I had always thought that, should I ever develop cancer, I would forgo chemotherapy. Chemotherapy is poisonous and barbaric, I believed. It brings us to the brink of death and then drags us back and, some folks never do return.
I'd rather take my chances on clinical trials and new treatments, I thought. And I firmly believed that these decisions should be made while we are healthy, when our minds are not clouded by the subjectivity and irrational passion that comes with disease.
Then I read Still Alice, a first novel by Lisa Genova.
Now, Alice does not have cancer. She has early-onset Alzheimer's Disease. But, like me, the healthier, rational Alice believes that she knows what is best for the Alice to come. She creates a quiz for herself that she takes daily, thanks to the reminder technology on her Blackberry. If she can't answer all the questions correctly, she is directed to a file that will instruct her to take a lethal dose of sleeping pills.
I won't go into the rest of the story because I don't want to ruin it for anyone. But I will say that the novel has altered my perspective on terminal disease. The author, Lisa Genova, has a PhD in neuroscience and works with Alzheimer's patients. She clearly knows her subject and almost seems to crawl into the Alzheimer's mind.
Her depiction of the progression of Alzheimer's is, admittedly, a bit too rosy at times.
Alice isn't anything like my husband's grandmother (Well, she wasn't really his grandmother. She was his step-grandmother and, also, his aunt by marriage, but I won't go into that here.). Alice doesn't confuse real life with soap operas and accuse her husband of cheating on her.
She isn't like my good friend's aunt, whom he found strapped to her bed in a nursing home when he visited. He was told that she had lashed out violently and that they had no choice, but to restrain her.
But the author's decision to leave out the nasty stuff doesn't matter.
We do have an Alice in our neighborhood who lives with her son. She is sweet, kind and completely unaware of her surroundings. Alices do exist. All cases are different and the author doesn't have to rely on the worst-case scenarios to get her point across.
And her point is more universal for me than it is, I think, for most.
Sure, she deepened my understanding of Alzheimer's disease with her well-informed fictionalization. She helped me understand that we are more than our memories and that no disease can change our souls.
But, for me, the lesson was broader.
Through Alice, I came to see that I cannot make rational, informed decisions for myself before I face the possibility of death or terminal disease. I don't know enough yet. I am ignorant, just as Alice was ignorant in the earliest stage of her own disease.
I am ignorant because disease is more than science.
Treatment is about more than medical cures.
And living is about more than being physically or mentally whole.
I am ignorant, but am happy to embrace that ignorance.
Thanks to Alice.