Early onset Alzheimer’s. It is hard to think of a worse diagnosis. ALS maybe (which a beloved member of my island community was just diagnosed with having – at a relatively young age.) Cancer — not according to the main character in this movie. If one lives in one’s mind, more than in one’s body, an intellectual, a lawyer, a teacher, then to lose one’s ability to think, to reason, to speak coherently and cogently, while knowing it is also a death sentence, is a living hell. Of course, I speak from the theoretical, never having suffered anything worse than a moderate case of diverticulitis.
I don’t know what was going through Deloris’s mind as we sat in our TV room watching Julianne Moore give an Oscar winning performance in Still Alice. Alice Nowland, a Columbia professor who, at age 50, is diagnosed with early onset Alzheimers. And if that is not enough, the nature of the disease is genetic, meaning there is a 50-50 chance she passed the gene to her children. If they have it, there is a 100% chance they will come down with the disease. In the movie, Alice has three children, the oldest of whom is a daughter, a lawyer, and pregnant with twins. Naturally, she is the only one who tests positive. Another child tests negative, and one doesn’t take the test.
Would I want to know if I carry the gene Moore’s movie character has? While I can more easily answer that question in the abstract, a definite NO, I don’t know how I would answer in real time. It’s very contextual. How old will I be? What is my family situation? My professional situation? My health? Since there is no cure for the disease, why would I want to know? On the other hand, would I want to live without that knowledge, while my mind is also wondering if I carry the dreaded gene. How would that impact my feelings toward the “giving” parent? These are just some of the questions that surfaced while watching the scene.
Luckily, I don’t have to worry about these things in real life. All I have to deal with is a wife who remains in recovery mode from a stroke. Deloris suffers only from moderate cognitive deficiencies as a result of her stroke. Unlike Julianne Moore’s character, and other Alzheimer patients, Deloris’s condition is not progressive. There is no reason to believe her mental abilities, or physical capabilities, will worsen, except through the normal ravages of age.
And while I get frustrated from time to time with her inability to remember things, with her lack of energy, with her sedentary lifestyle, I feel incredibly blessed we can carry on conversations, she enjoys people and her life (at least for the most part,) is intellectually engaged, mobile and somewhat independent. Sure our life has been irreparably changed. Some activities are permanently off the table. I feel like I spend a great deal of time (real and psychic) alone. At the same time, I feel blessed that in the spectrum of what could have been, we are nearer the “no problem” than at the other end. And I have learned so much about myself, as well as the depth of our connection to each other from this experience. In so many ways it has been a blessing. And not the least of that ways, is that neither Deloris nor I are suffering from Alzheimer’s. At least not yet. Hopefully we never will.
SEE THIS MOVIE. You will laugh (well, at least titter,) you may cry; you will become engaged with all the characters, and mostly positively. It is real. And it is what film-making should be — entertaining, and at the same time educational and artistic. And it makes you think!