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To be, or not to be?
Hamlet asks this question in Act 3, scene 1 of Shakespeare’s famous tragedy. Hackneyed as the soliloquy has become, Hamlet raises an important query as he waxes existential about the human condition: with the many toils and trials of life, might entering into death be a better choice? In other words, if life is so burdensome, why not just commit suicide?
It’s a morbid, but valid, question for any who've encountered significant strife. Hamlet poses that the only thing stopping us from killing ourselves is our lack of confidence in what awaits us on the other side. What if the afterlife is even worse than the present one? (Heaven forbid, if you’ll forgive the pun.) With such a serious unknown variable, perhaps it is wiser to live—to be—even with the guarantee of suffering in this life.
There are no easy answers, of course. Shakespeare never claimed to be a philosopher or a theologian. He was a poet and playwright, struggling with life’s most difficult questions through his art. So the quandary remains: why live, when the living is so hard?
Huntington’s and Suicide
It is an especially relevant question for many living with Huntington’s Disease (HD). Notably, some studies have shown that HD patients are up to 10 times more likely to commit suicide than the general population. It is not overly dramatic to say that living with Huntington’s seems to make people want to kill themselves.
Though researchers are still trying to fully understand this phenomenon, depression is a clear risk factor for suicidal ideation and attempts. Given the high prevalence of depression among those with HD, it’s no wonder that suicide rates are also significantly higher.
Suffering in Huntington’s Disease
What is it that makes Huntington’s so hard to bear?
There is the disease itself: Huntington's is a rare genetic disease that causes the brain to break down over time. The most characteristic symptoms are involuntary movements of the face and limbs that typically begin in midlife. It also causes significant cognitive and psychiatric decline. Symptoms gradually worsen over a span of 10-25 years: a slow, drawn-out torture, until death. It gradually but relentlessly impairs functioning in all areas of life, and eventually walking, talking, and eating deteriorate such that those with HD become completely dependent upon caregivers in the final stages. Many die of complications related to pneumonia, swallowing difficulties, or heart failure.
There are other layers of suffering as well. For one, Huntington’s is often referred to as a "family disease" because of its genetic inheritability. If a parent has HD, each of his or her children has a 50% chance of having it also. It is generational: children watch as their parents, grandparents, or aunts and uncles suffer, and then they wait to see if they, their siblings, or their cousins will suffer as well.
Some layers get even more complex. Those who are at risk for Huntington’s but are not yet symptomatic must deal with philosophical dilemmas, such as the anticipation of suffering. Foreknowledge of suffering is distinct from the suffering itself, because you have time to consider how, or even if, you want to face it. This is both a psychological and spiritual process, one that taps into our deepest notions of fear, courage, and the meaning of life.
So yes, the burdens are real. For many HD patients, the desire to be relieved from this suffering can make suicide seem like a viable option. To be, or not to be, indeed.
A Lived Reality
Though I am currently asymptomatic (meaning that my motor symptoms have not yet manifested), I am gene-positive for HD. It is a genetic certainty that I will become symptomatic at some point: tragedy is literally written into my DNA.
I Can Confirm That This Is a Major Bummer
I am less frightened of the motor symptoms than I am the psychological ones. Thanks to my family history and childhood trauma, I got an early start on depression. My first episode of major depression was in 2008, long before I found out I was gene-positive in 2022. So, like Hamlet, I am already familiar with that noonday demon. Knowing that my depression is almost certainly going to get worse as my HD progresses does not make me feel good.
If no cure is found, I can also expect the loss of independence, and my personal nightmare: personality disintegration. I hadn’t even heard that term before reading about Huntington’s. It makes it sound as though my personality is just going to fall apart. I will lose who I am, who I know myself to be. Which parts of my personality might get lost? What principles, beliefs, memories, and talents will weaken, or disappear altogether? The thought of that is often too overwhelming, and I can’t stay with it for too long without starting to dissociate
There are other parts of this illness that feel too huge to even begin to process, like the fact that I will likely not be around to see what kind of adults my children become, or to meet any grandchildren I may have. This is to say nothing about the risk to each of my kids. The thought of them suffering is easily the most hellish part of this illness.
Comic Relief
I would like to take a brief intermission to acknowledge all of the coping mechanisms that have helped me to carry this weight so far: music, my dog, biking, and my personal favorite, legal cannabis.
Living Intentionally
The suffering is immense, yes, as is the desire to make it all go away. Sometimes it does feel like a relief to imagine bypassing a tragic future in hopes that whatever comes next is less depressing.
When I get stuck there, I often think about the advice I was given when I first found out I was gene-positive. My medical team gave me a strong, sound affirmation: “Don’t start acting like you're sick, because you’re not.” They urged me to remember that I can and should go on living as I had been doing. And I could do so with increased motivation to enjoy the present as thoroughly as possible.
So I do. I write. I sing. I ride (on the back of) motorcycles. I make really bad puns. I dance and drive and run. I manage my own counseling practice. I work on my spiritual growth and parent my kids. I lose my temper, make bad decisions, and drink too much. I go out with my friends and make new ones. I love people, and I explore paths that seem to beckon me.
I travel more, take risks more, and seek opportunities to make memories as frequently as I can. And I will keep doing so, for as long as I possibly can. I’m also trying to be serious about forming a bucket list and actually doing the items that make the cut. Macchu Picchu, here I come!
Reasons to Hope
Recently I told someone about having HD, and she looked me squarely in the eye and told me it wasn’t going to come to pass. It was the strangest but most beautiful thing, as if she were speaking a prophecy over me (very Shakespearean). Though I’ve felt waves of hopefulness in the past when I hear about the rapidly advancing research in neurological science, it was the first time I truly allowed myself to believe that maybe, just maybe, the fates will deliver a cure just in time to benefit my children and me.
Perhaps it is foolish to hope for something so grand to happen in my lifetime. It feels like it would take a miracle. But that would be the greatest gift: if, in the end, I find out this tragedy has actually been a comedy, and all my worrying was for naught. (I've always been more of a A Midsummer's Night's Dream kind of girl anyway.) I would love nothing more than to be able to look back and laugh at my own drama.
Yet even if that does not occur, I still choose, for now, to be. I will keep my mortal coil and bear the ills I have, because the more I embrace my mortality, the more I find myself living the life I've always wanted to live. I still carry my depression and my fears about the future. But I also allow myself to dream that big, wonderful things—even miracles—are possible. And being someone who believes that the impossible can happen makes me feel more alive than ever.
If you or someone you love is contemplating suicide, seek help immediately. For help 24/7 dial 988 for the National Suicide Prevention Lifeline, or reach out to the Crisis Text Line by texting TALK to 741741. To find a therapist near you, visit the Psychology Today Therapy Directory.
