Family Bonds

I can't really blame Eileen Tumulty, the main character in Matthew Thomas's debut novel We Are Not Ourselves. Growing up in the 50's in a blue collar Queens apartment with alcoholic parents whose marriage is fragile, it's only natural that she is determined to do better. So when she meets Ed Leary - intelligent, serious, reliable, a talented scientist - he seems the perfect choice. She envisions a bright and prosperous future with a home in her version of Shangri-La – Bronxville. Perhaps she misses some early clues that his seriousness might be tinged with rigidity, or that his idealism might conflict with her ambitions. When reality finally sets in, her desperation to get out of Queens causes her to commit an act of betrayal.

But she has little time to enjoy her Bronxville fixer-upper with Ed and son Connell before she is hit with a stark truth. Her fifty-two-year-old husband has Alzheimer's disease. As anyone who has dealt with it knows, the course of this disease is relentless, and Thomas's description is unsparing (his own father died from it in 2002). Connell stumbles badly in his attempts to face his father's illness and his mother's need for his help, and Eileen is no saint, but Thomas makes them sympathetic even in their failings. I have to admire Eileen's grit and determination in the face of the crushing obstacles she must tackle.

Thomas paints on a small canvas – his characters lead ordinary lives in a circumscribed world (he reminds me of Alice McDermott, who was once his teacher). But his characters have a resonance beyond their own small stage, and the title, taken from King Lear, expresses this well.

We are not ourselves

When nature, being oppressed, commands the mind

To suffer with the body.

Where did I leave my car keys?

Why do I keep reading these books about people with Alzheimer’s? Do I think that somehow reading about it can prevent it from happening? If only it were that simple. My lastest foray into the realm of the mind is the novel Still Alice by Lisa Genova. Genova has a PhD in neuroscience from Harvard and helped care for her own grandmother who had Alzheimer’s in her 80s so she knows whereof she writes on several levels.

This is the story of Alice Howland, a professor of cognitive psychology at Harvard, married to a scientist, with three grown children. It starts with small moments: she forgets a significant word during a lecture presentation, but remembers it later (of course); she goes out for a run and momentarily doesn’t recognizing the surroundings where she has been a thousand times (Harvard Square); she asks her daughter the same question about her roommates (“I just told you. Why don’t you listen to anything I say?”). But the scariest part is that Alice is only 50 years old.

When she can no longer pretend that these incidents are related to early menopause, she investigates as the scientist that she is and finally receives a diagnosis of EOAD (Early Onset Alzheimer’s Disease). By definition, EOAD is only for people under 65 years of age. All of this happens early on in the book so no spoiler.

Then the book follows Alice and her family as they come to terms with her illness and as it progresses. But unlike many other books on the same subject the voice of this story is that of Alice, from the “inside” as it were. There’s a lot to learn here including some real science and especially some lessons in how to interact with and how not to act toward someone who has Alzheimer’s. The family members who rise to the occasion – or fall – are not always the ones you would predict.

The particular form of the disease that Alice has is related to a certain gene for which one can be tested and which if present is unfailingly predictive of the later onset of the disease. Each of the three children has a choice of whether to be tested and find out if he or she will eventually develop EOAD. I am still thinking about what I would do in that circumstance. Would I get the test? How would life change if I learned that I had the defective gene? Would I want a pact among siblings that we all make the same choice? What if we had differing results?

Of course I am too old ever to have EOAD but that’s only one variation. From the World Health Organization website: “In November 2000, the National Institute on Aging (USA) estimated that up to 50% of Americans aged 85 years or more may have Alzheimer’s disease.” As we look at our friends and family and are working hard ourselves at living healthy lifestyles to live longer, we are going to face this disease “up close and personal” as they say, if we haven’t already. Studying the science of this disease will give us facts; but studying the lives of people with the disease, even through fiction, may give us some wisdom. I recommend that you read this book.

More:
www.actionalz.org
www.alz.org
www.StillAlice.com