I MAY GET AN INCURABLE DISEASE. I’M CHOOSING NOT TO TEST FOR IT.

“I’ve decided to get tested for Huntington’s disease,” my sister Lindsey said one gray January afternoon in New York while we were getting our nails done.

She asked to spend some one-on-one time together while she and her boyfriend were in town, which I found odd. Lindsey and I talk on the phone often and had already spoken three times that week. Now it made sense.

Our dad was diagnosed with the incurable neurodegenerative disease when he was 47 and died of complications at 57. Every child of a parent with Huntington’s — such as my two sisters and I — has a 50 percent chance of inheriting the gene that causes the disease.

Unlike conditions where you may not get the disease even if you carry the gene, if you test positive for Huntington’s, you will almost certainly develop it at some point. At-risk people can find out whether they have the gene through a testing process that includes a blood draw and appointments with trained genetic counselors who are available to discuss the process and the results before and after the test.

At 27, Lindsey decided to take this step. At 32, I have decided not to. Each decision has come with its own set of challenges.

How the disease affected our dad

Huntington’s disease is similar to “having ALS, Parkinson’s and Alzheimer’s — simultaneously,” according to the Huntington’s Disease Society of America.

Like many families with Huntington’s disease ancestry, our dad’s family denied the genetic illness, making it difficult to connect his car crashes and job firings to the disease. After our mom found hidden foreclosure bills in the garage, our parents divorced. Three years later, our dad was officially diagnosed.

Although his diagnosis allowed us to reconnect as a family, my two sisters and I were no longer simply the children of divorce. We now knew there was a 50 percent chance that the illness that ruined his life would affect ours one day, too.

Subtle symptoms, such as mood swings, irritability and difficulty multitasking, typically start showing up in a person’s 30s and 40s, according to the society. Motor symptoms, such as involuntary movements and an inability to talk or swallow, usually arise in a person’s 40s and 50s and worsen over 10 to 15 years, the organization says.

Our dad spent the end of his 40s in assisted living before moving into a nursing home, where he declined over the next decade. First, he lost 30 pounds and would use a walker. Then, he lost another 40 pounds and had to be pushed around in a wheelchair. At 98 pounds and confined to bed, he died two days before his 58th birthday.

The two perspectives

As the manicurists started on our first coat, Lindsey talked about the struggles she faced not knowing her diagnosis.

She didn’t know whether she should go back to school for seven years if she was going to start getting sick in 10 years. She was pretty sure she wanted kids, but without knowing her diagnosis, she couldn’t make any decisions about that, either. She felt stuck and stressed, and the key to moving forward was learning whether she had the gene for Huntington’s disease.

She paused, hoping for a response or maybe just a flash or recognition.

“I feel like being at-risk only affects my life in a good way,” was all I could say.

I didn’t want kids, or to invest in a pricey academic career. I just wanted to travel, write and live in the now.

Throughout my 20s, I had continuously decided not to test. Being at-risk suited me. The 50 percent chance I had of getting sick gave me drive, ambition and a grateful presentness. The other 50 percent gave me hope for a long and happy future.

“I feel like it only affects my life negatively,” Lindsey replied.

I nodded. She didn’t need to clarify. I knew what she meant. I had my down days, where my 50 percent chance of a shorter life didn’t feel like an opportunity to be present and motivated, but an unfair burden.

Something as simple as dropping a glass of water could leave me shaking and in tears. “Is this a symptom?” I’d question between heavy breaths. “Or just a clumsy accident?”

Without a diagnosis, you can’t know for sure — and those mental gymnastics were not something Lindsey was willing to live with anymore.

Christmas came and went without specifics about when Lindsey would get her results. I signed up with a new therapist in preparation for the big news.

Then, one Tuesday in January, she texted to see whether I was free for a video call after work. We sat on our couches in our separate cities. She had a blanket over her legs and a giant wine glass in her hand.

I leaned in close to the screen.

“I tested positive,” she said.

The next morning, I took the day off and met friends at a bar, where we sat mostly in silence. “Surreal” seemed to be our favorite word to describe our numb, dreamlike state. I spent a week in bed watching “Grey’s Anatomy,” but, after a while, my life went back to normal.

It took Lindsey longer.

For a year, I watched her bounce back and forth between dread and solace. She reached out to family members we had fallen out of touch with to hear stories about our dad before he was sick. She made dark, offhanded comments like, “Well, I might be dead by then,” or, “I won’t be around to see that, anyway.”

Other times, you could sense her relief at knowing. She had her partner, a longtime therapist and friends to lean on, and all of those big life decisions she had struggled to make seemed to come into focus.

Clarity, changes and what the future holds

Two years since our conversation in the nail salon, knowing her Huntington’s disease fate seems to offer mostly clarity. She said she is learning to say no for what feels like the first time, and she and her fiancé are organizing a small wedding in Italy, courtesy of her retirement savings.

Meanwhile, I’ve found myself slipping into the darker side of Lindsey’s diagnosis, slowly coming to terms with the new reality of my 50 percent chance. The 50 percent chance of a long and happy future is no longer all that happy.

The best-case scenario now — the upside of my 50 percent chance — is that I live a long and healthy life while I watch my little sister decline the same way our dad did.

My first best friend, who popped the head off my favorite Barbie, may one day twitch so aggressively that she won’t be able to hold a book. The girl I stayed up with until 5 a.m. drinking wine on the bedroom floor of my first apartment may not be able to tell me that funny thing our mom did. Instead, we might end up having one-sided conversations as she struggles to string together words that I’ll have to pretend to understand, just like I pretended to understand our dad.

The girl who told her class that Mary Poppins and Dorothy from “The Wizard of Oz” were the same person because her “big sister said so” might lose so much weight that we’ll have to poke holes in belts to keep her pants up. Or maybe she’ll opt for suspenders, like our dad.

Then again, I could get equally sick. I may have to listen to audio versions of books and get frustrated when no one understands me.

My choice

I’ll probably only test for Huntington’s if or when symptoms begin to show. I already live my life as if I’ve been diagnosed with it — prioritizing current happiness above future comfort — without having to fully sacrifice the idea of a healthy future.

“I just feel like I can’t waste a single day,” I said to Lindsey on the phone as I paced around my apartment one unusually free Saturday. I had the day to myself, and I couldn’t decide what to do with it.

I ran through all the usual options: gym and farmers market, bookstore and coffee shop writing session, bar with friends. Nothing spoke to me, and the overwhelming panic shook my words.

“Every time I decide to do something, I feel like I have to make the most of it,” I said as I pictured myself at 6 p.m. sitting on the couch bored and unhappy after making the wrong decision. “Because, you know,” I said, trailing off.

“No, I know,” she replied in her calming tone.

I’m grateful for this reminder to live a full life. But the pressure to live every single moment, day and activity so as not to waste my healthy mind and body while I still have it can be immobilizing.

It has become a balancing act of presentness. One I’m slowly learning.

2025-07-05T10:05:18Z