Life After Knowing How You’re Going to Die

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In early 2020, Jasmine Demers got a call from her father; her grandmother was dying. She hurried to her nursing home. At this point, Demers’s grandmother weighed around 85 pounds, skinnier than she’d ever been. Her face was sunken and pale, her body curled up in bed. She wasn’t aware of what was happening. Demers lay with her and cried while a couple of her aunts sang. During this time, Demers realized she wasn’t only watching her grandmother die — she was looking into her own future. Most likely, she would die the same way.

Demers’s grandmother had Huntington’s disease, an inherited fatal genetic disorder that leads to the progressive breakdown of nerve cells in the brain. Demers’s father has also been diagnosed with the disease, which led to Demers herself getting tested at 25 while finishing her master’s in journalism. (If you have a parent with HD, there is a 50 percent risk of inheriting the gene.)

She was married — to her high-school sweetheart, whom she wed at 19 — when she underwent testing, which was partly her reason for doing so: Demers wanted to avoid passing on the gene to any potential future children. “That was the most important thing to me,” she says.

While getting the positive test result did not mean that Demers had HD at that moment, it did mean that she would get it in the future. “Unlike other genetic tests that only identify risks for conditions, if someone tests positive for HD, they will definitely develop the symptoms of the disease,” says Louise Vetter, the president and CEO of the Huntington’s Disease Society of America. Although the onset of symptoms is different for every person and influenced by many factors, the average age of symptom onset for someone who tests positive for HD is the mid-to-late 30s. The rate of progression also varies, but the time between first developing symptoms until death ranges between ten to 30 years.

There is currently no cure for the disease, which leaves a person without control over their body and mind. It is estimated that 41,000 Americans display HD symptoms and 200,000 are at risk of inheriting the disease. Symptoms include involuntary movements, difficulty swallowing, depression, and hallucinations.

Demers, now 29, has been living with the results for four years and even made a documentary about it. “I think of Huntington’s disease as this character that’s living in my brain,” she says. “He’s kind of small right now. He’s just hanging out in there, very nonchalant and unassuming. But as the days and months and years go by, he becomes more calculated. He becomes more menacing. And then one day, you’re just gone. Whoever you were is gone. Whoever you wanted to be is gone. And that is a very, very, very scary thing.”

How did you feel after you got the positive test result?
There was part of me that was like, I’m going to test negative. I’m going to be the one that beats it. So to get that positive result was very difficult for me. I just cried for a couple of days. After those couple of days, I just put my boots on and kept going. I got through the semester and went on a trip to Europe after I graduated. I started my new job, and life continued on.

What happened as time went on?
I started to have trouble focusing at work. I started feeling like I had no purpose. There were some moments where I was like, What’s the point? Why am I working this hard? If I know how I’m going to end up, why am I building a life that is eventually going to end in such a devastating way? I had never felt like that ever before in my life. For a while, I didn’t even want to have kids — and I’ve always wanted to be a mom. When I started to feel this way, I thought, Why would I want to bring kids into this world just so they can watch me fall apart?

About a year passed before I realized that I was depressed and that I didn’t deal with some of those emotions that I should have dealt with after I got tested because I felt paralyzed.

How did your husband react?
He lets me cry when I need to. He reassures me that he’s going to be there to take care of me. We talk about how I want the end of my life to go. That’s such an awful thing that someone my age should have to talk about. But it’s been tremendously important for me to be able to communicate what I want to him and have him take that without judgment and without saying, “We don’t need to talk about this right now.” He doesn’t say that ever.

Has anything good come out of your positive test result?
Some people will tell you, “You could die in a car accident tomorrow.” I certainly know that. There’s a number of things that could kill me before Huntington’s disease does, but if I’m not killed by any of those things, Huntington’s disease is how I’m going to die. It’s a very crippling feeling to know how you’re going to die. But by getting those test results, I was able to take back some sense of control. I was able to say, This is how I am going to stop the disease from moving forward in my family. Now that I know that I’m positive, I’m going to use IVF and genetic embryo testing so my baby is not going to be at risk of having Huntington’s disease.

Tell me about planning for the future.
I didn’t put myself on long-term-care insurance before I was tested, and I didn’t test anonymously. It’s made things difficult moving forward because I wanted to get insurance. I didn’t know at the time that I needed to start paying for long-term-care insurance before I tested. The genetic counselor didn’t mention it to me at all.  

So were you denied insurance because of the positive results?
I applied for life insurance after the fact; I put that I was diagnosed with Huntington’s, and I was denied. I now have life insurance through my current job. But I was so frustrated at the time. I’m still frustrated about it.

I thought that testing was going to make it so that I could just be as prepared as possible, but it’s actually made it a little bit harder for me to get the things that I need. And that’s one of the things that I hope that advocates in this community can really fight for, because I think that it’s bullshit that people are getting tested and trying to go about this the right way and still getting turned away for the care that they’re going to need later on in their lives.

So given the insurance situation, what steps have you taken to plan?
When I realized that I wasn’t going to be able to get that extra insurance, I changed the way I do things financially. I doubled down on the amount of retirement funding that’s being taken from my paychecks. And my husband also has extra taken out of his checks a month so that we can put it into our 401(k). That’s going to be a big part of how we plan for the future of our retirement funding. A lot of extra money that we have is going into savings as well.

The other part is just making sure that the people in my life know what I want. And it seems so silly that a 29-year-old would have to talk about those things, but just being able to communicate with my family about what I want my life to look like when I can’t talk or when I can’t advocate for myself has been a really important thing.

Does your father’s and grandmother’s experience worry you about your own?
When my grandma and my dad were at the early stages of their disease, even though they weren’t experiencing any physical symptoms, they were experiencing intense emotional and psychological symptoms. This means depression, anxiety, and dependency on things like alcohol and drugs. And so that all very much impacts an entire family. Both my grandma and my dad tried to commit suicide.

Based on my family and their history with it, I know that I’m going to be dealing with those things, but I don’t know if I’m going to be able to prevent it the way that I want to.

If I could have gone to my dad or my grandma and asked them, “Did you see this coming? Did you think that you were capable of trying to kill yourself?,” I don’t think either of them would say “yes.” We thought that we had things under control, and it just happened so fast. The feelings came in all at once. And we weren’t capable of managing it because the depression was just so bad.

So I worry about how it will hit me. I worry about feeling so sad that nothing matters and my life doesn’t have purpose. I worry about feeling all of those things so much, to the extent that I would want to take myself from the world.
What are you doing differently now for your physical and mental health?
I started online therapy about a year ago. It’s never too early to start going to therapy because we know that this disease will have long-term psychological effects on you. They’re still researching things about how you can protect your body long term, but we know that this is a disease that attacks your brain. So anything that you can be doing to protect your brain is going to be really important throughout your life. I started doing crossword puzzles every day. I’ve been doing my best to exercise when I can. I’m not the fittest person, and I don’t particularly enjoy going to the gym, but just getting my body moving every day, even if it’s just going on a walk, has been something that I have implemented into my daily life.

The other thing is what you’re consuming. So food-wise, I try to stick to a healthy diet. I’m not saying that I’m not eating burgers and chicken nuggets, but I try to eat things that promote brain health, like blueberries. I also stopped drinking alcohol at the beginning of this year. It’s not like I drank very much before, but I’m still young. I go out with my friends, we celebrate, and we have a good time. Alcohol is not good for your brain long term, and I want to protect my brain as long as I can.

I have probably what would be considered an unhealthy obsession with time, because I constantly feel like I’m running out of time. But at the same time, I have just a really new love for life. I was always very grateful for life. I was always very ambitious. But after knowing those results, I have to condense things into a shorter amount of time and condense my ambitions.

I also just appreciate things a lot more. I appreciate my relationships with people more. I appreciate the time I get to spend with my family. I live in Louisville now, but I’m really itching to go back home to Tucson because I deeply miss my family and have really started to understand the value and the privilege of being able to spend time with your family.

After sitting with your diagnosis, how are you feeling about having kids?
My husband has really reassured me about the future. It’s scary to think about bringing a child into a situation where they’re going to have to see me get sick, and they’re going to have to watch what I watched when I was growing up with my grandma and now my dad. I would never want to be a burden to them or make them feel like they have to take care of me. I just want them to have the most fulfilling life. But my husband was just the most reassuring. And he continues to be super-reassuring.

We’re incredibly lucky and privileged that we can even consider something like IVF and genetic embryo testing. There are great grant programs through the Huntington’s Disease Society of America, so we will be applying for one of those to help pay for that process. But even if we didn’t have those grants available, we would find a way to move forward with that. But it’s an incredibly expensive thing to do, and a lot of people do not have the privilege of being able to even consider that.

How do you feel about your diagnosis now?
Grief is not linear. There are going to be moments for the rest of my life where I feel incredibly sad and like I am losing time. But I would say right now I’m feeling the most hopeful that I ever have, because I am excited about my future. I’m excited about creating a family. I’m excited about my career. I’m excited about the time that I get to spend with my family. I’m also excited about the direction that research is going in right now for Huntington’s disease. I think there are some really dedicated scientists and researchers out there who are doing their damnedest to find new treatments and, hopefully, a cure for this disease. And that’s the most that I can ask for.

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Life After Knowing How You’re Going to Die