testing, testing

Months ago I read this article and asked myself, as I’m sure everyone who read it did, would I want to know? Not for my children, I mean–there, I think the answer is yes, especially with something as awful as Gerstmann-Straussler-Scheinker disease. Let it end, and stop snaking its way through the population to strike suddenly and with sorrow. But before you get to that part you deal with whether you want to know yourself–whether you carry the genes that damn you. And at the time, discussing it with my husband, I made some determinedly flippant remark like “I’m already going to get Alzheimer’s, what do I care what else I’ll get? I won’t even be there anymore.”

But of course I was only being flippant. Even though “every woman we can remember” in my family has started forgetting everything in her later years, it used to be that every time I said that someone would barge in and point out loudly that there was no genetic proof; that people didn’t know; that it wasn’t inheritable.

And if you want to define “inheritable” as a definitive yes/no chance, sure, you can say it’s not inheritable. But now we know there is a gene, specifically the APOE4 gene, that “gives a person a 67 percent chance of developing Alzheimer’s.” This, I had not known until I read the article in The Atlantic, and verified with the Mayo Clinic that this was legitimate fact. At which point I had to ask myself, do I want to know?

I thought of the NPR story on prostate cancer earlier this year, with its discussion of how something else is more likely to kill you before your prostate cancer (which apparently most men get?) does, but in the meantime, if you’ve gone and gotten tested, you’re living the rest of your life with this axe hanging over your head. And that the psychological damage that does outweighs the minimal medical advantages of pushing for testing, testing, testing in populations at low risk of developing early-age prostate cancer.

My situation isn’t quite the same, because Alzheimer’s isn’t a death sentence, and it most definitely affects you and the people around you long before, in most cases, your body starts to fall apart. But the psychological weight–the axe–is the same. Sure, my family tells itself that this is how its women go. But we can only remember back two or three generations, and in the vagueness one can find hope, if one so chooses. Would I want to definitively know that, all other possible contributing factors like diet and lifestyle aside, I by default had a 67% change of getting this disease I am far too familiar with by this point?

No. I don’t.

Every generation in my family told itself it didn’t have to worry, because “they’ll develop a cure by the time I need it.” And they didn’t develop a cure. But I still don’t want to know. Because I’ve already seen people’s lives upended–and ended–by car crashes, guns, bombings. Terrorist attacks. I’m already aware of just how short a time my allotment can be–even if not physically speaking; even if we’re talking stroke, or coma, or a vegetable state held in place and alive by mandatory state laws. I already live as though I could die, mentally or totally, tomorrow, or next week, or next year. I don’t need to know for sure that it’s going to happen. Because I already know it’s going to eventually, and the time that remains would be a little difficult to enjoy with the assured ticking of a clock always running under the surface of everything you think, say, do.

I hope this does not sound morbid. It would be odder still if I did not think about these things, given my family’s background, and science’s grim success in being more able than ever to forecast our fates, but not to fix them. In one of her last brilliantly lucid moments before the anesthesia required by her cancer surgeries hastened what was already early-onset dementia, my mother sat in a Panera, in a booth across from my husband-to-be and me, and said she was content. That her whole life she’d thought she’d fear the disease she had kinda-sorta figured was coming, as I do, but when it was finally there in front of her she was pleased with what she had accomplished; who she had become, and that she found it pleasantly surprising. The only regret she had was that she wouldn’t be able to relish the pleasant surprise very long.

“She’s so morbid,” I sobbed to my almost-husband in the parking lot, after my mother had headed back to her hotel, where my sister had driven her for the bridal shower festivities. “No she’s not,” he insisted. “She’s happy. She said so. She’s happy.”

And she was.

But she didn’t get there by knowing, for certain-sure, her whole life, how it would end. She was able to do everything she wanted, be everything she wanted, because of the vagueness, the hope that the family’s too-familiar curse would pass her by. And if I cannot maintain my memories until my death, I can at least maintain my happiness, or my pursuit of it, until I am no longer myself.

That is the best I can do.


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