“Don’t spend a lot of time imagining the worst-case scenario. It rarely goes down as you imagine it will, and if by some fluke it does, you will have lived it twice.” —Michael J. Fox

A Rainy Day

I suspect it’s not the easiest job in the world to tell someone they’re going to die.

It was a rainy day in March when I sat in a room with a neurologist tasked with doing just that. I’d been waiting for weeks to receive the results of the genetic testing I’d undergone, so he didn’t hesitate or keep me in suspense. He just walked in the room, sat down, and came out with it: “You are gene-positive for Huntington’s Disease.”

That was a little over four years ago. Since then, I’ve met with the same neurologist every six months. I go because of one very small, microscopic problem: One of the genes on my chromosomes has a mutation.

Specifically, my huntingtin gene (HTT, which is located on chromosome 4 and is responsible for healthy brain development and nerve cell survival) has an abnormal repeat of a particular combination of nucleotides called a CAG repeat. Anyone with 40 or more repeats will manifest Huntington’s Disease (HD) in their lifetime; it’s just a matter of when. My number? 41.

Tom Petty Said It Best: The Waiting Is the Hardest Part

The disease is not officially diagnosed until people begin exhibiting the most characteristic symptom of HD: involuntary movements known as chorea. According to my doctors, I am still in what is referred to as the prodromal phase of HD (also known as the pre-motor, pre-clinical, or pre-manifest phase). It means that my genetics are set to self-destruct, but the countdown hasn’t yet begun.

People in this phase often experience non-motor HD symptoms (like depression and mood issues, trouble with organization and memory, and subtle changes in coordination) in the years leading up to clinical diagnosis. But the hardest part, at least for me, is the weight of knowing that the worst is coming, without knowing when, or exactly how bad it will be when it does.

Usually, the “when” is mid-life: motor symptoms typically begin in a person’s 30s and 40s. But sometimes, despite the averages, symptoms don’t appear until a person’s 60s or 70s, meaning that some people get to live pretty full lives before the deterioration begins. At 43 years old, I could begin to experience motor symptoms next week, or a decade or more from now.

There’s also a huge degree of variation in symptom severity. Though HD always follows a similar course that ends in death, sometimes the road leading up to it includes more years of mild symptoms than severe ones. The progression is unique to each individual, and there is no way to know exactly what it will look like.

Enter Schrödinger’s Cat

My brain often works in pictures, analogies, and metaphors, and when I try to describe what sitting in this tension feels like, my brain (apparently) goes to quantum mechanics.

In the famous thought experiment, theoretical physicist Erwin Schrödinger proposed the following: suppose you have a box, and in the box is a cat (because if there’s anything cats love, it’s being confined against their will). Along with the cat is a radioactive substance, a Geiger counter, and a flask of poison. There is a 50/50 chance that atoms in the radioactive material will decay. If any do, the Geiger counter would detect the emitted radiation and trigger a hammer that breaks the flask, releasing the poison and killing the cat (sorry, kitty). In quantum mechanics terms (which talks in maths), the cat, whose state is undetermined until the box is opened, is presumed to be both alive and dead at the same time.

That’s silly, you say. How can a cat be both dead and alive at the same time? Well, it can’t be, and that’s what Schrödinger was trying to point out. But the complexity remains: Until an observer opens the box and can know the cat’s fate, how can one measure, or describe mathematically, the state of the cat?

I don’t know; I’m not a quantum physicist. But I do know I empathize with the cat.

I Am the Cat

What I mean is that being in the prodromal phase is a bit like waiting for the flask to break. The cat represents my future self, and I am trapped inside a box with my poisonous DNA. My odds are worse than the cat’s, because it is with nearly 100 percent certainty that the flask will break: My CAG repeat makes sure of that.

But when it breaks is still anyone’s guess. Maybe, if I’m lucky, it’ll hold off so I get to live as many of my nine lives as possible. Or maybe I’ll somehow end up with a weaker dose of the poison, and it’s not that bad even once it takes effect. Or maybe someone comes up with an antidote between now and then, or even better, a cure: Maybe someone will open the box and let me out.

In other words, when I think of my future, I have two timelines: one in which I am alive and get to see the world, retire, meet my grandchildren, and grow old with a partner, and one in which I am dead in my 50s, like my mother, her mother, and her grandfather, who passed on their genetics to me. Without being able to peer into the box, my future is unknown, and I am both dead and alive.

I Am Not the Cat

I recognize that I am not a cat, and that future me is merely a thought experiment. And while I can imagine her facing any number of possibilities, her death narrative has not yet played out. In that sense, I’d like to leave room for some version of a hopeful future. It helps to guard against the despair this disease brings.

I also try to remember that we all pass through death, and none of us knows the hour or the manner. I happen to have one particular version of a potential future that has been presented to me, so I can choose to live in that darkness now, or I can remain in the present, where there is still plenty of light.

I choose the latter. Like a happy kitty, I will bask in the sun as long as possible.