When Charlotte Raven was diagnosed with Huntington’s, an incurable degenerative disease, there seemed only one option: suicide. But would deciding how and when to die really give her back the control she desperately craved? And what about the consequences for her husband and young daughter?
I wanted to cover the topic of suicide tendencies within people who have incurable, terminal illnesses.
First, you should read her story.
Charlotte Raven tested positive for Huntingtons Disease in 2006, soon after the birth of her first child. The reoccurring theme I noticed in this article was control: Charlotte wanted control of her life, her destiny, and her mind, all of which you lose when the disease takes control. To her, the only way out was suicide.
My first suicidal thought was a kind of epiphany – like Batman figuring out his escape from the Joker’s death trap. It seemed very “me” to choose death over self-delusion. Ah ha, I thought. For the first time since the diagnosis, I slept through the night.
One in four people who are diagnosed with Huntingtons Disease commit suicide for a number of reasons: They don’t want their spouses to see them degrade and have the burden of caring for them, they don’t want to lose control of their body and mind and transform into a different person, they don’t want their children to see them suffer…and the list goes on.
And let me tell you, I am no stranger to these thoughts.
A week before my test results came in, I decided that if I tested positive for the disease, then I would become a missionary and move to the most dangerous and unreached place that existed, hopefully to die, I thought, for a good cause. I would never have to degrade. I would never have to suffer or watch my mother advance in her illness, and I would never let the disease take over who I was. That was my decision, and at the time, I thought it was a selfless one.
As soon as I stepped into the doctor’s office and heard the word “positive,” the room started to blur. The white walls closed in, and I held my breath while my dad sobbed. I smiled, said thank you to the doctor, and stepped out of the door.
I couldn’t make the second step. I collapsed into a heap on the floor, convinced that I had to die. I had to spare myself and my family from the pain. I kept screaming “I just wanted babies and a husband” over and over again, and everyone in the hospital stared in pity.
My dad carried me out, and we rode towards home in silence.
He told me I probably wouldn’t get it, that a cure would be found, that I wasn’t really sick. My whole family did. This is the part of Charlotte’s story that I relate towards the most.
Frustratingly, some friends and family recast this certainty as a probability. ‘You might not get it,’ they would say, offering half-remembered quotes from articles about the neuroprotective benefits of fish oil. I began to feel like the only evolutionist in a room full of creationists. I understand why they do it. A hereditary illness for which there is no cure is a challenge to our sense of ourselves as self-determining entities. Having invested so much in the fantasy that we are authors of our fate, we would rather credit ourselves with the power to generate miracles than accept the incontrovertible evidence to the contrary.
And it seemed that I was the only one who accepted my fate. I went home and stared into the mirror for an amount of time that I can’t remember. I touched my reflection as I thought about what would happen if I were to tie a stone around my ankle and jump into the lake that sat in our backyard.
That’s when I first read Charlotte’s article, and she presented some powerful arguments in persuasion of suicide.
My mind clicked into gear, issuing bullet points to back up the case for self-destruction:
• If my cat had HD, I wouldn’t make it carry on, but would get the vet to put it out of its misery.
• Without autonomy and the capacity for self-determination, life is meaningless. Merely existing isn’t enough.
• Dependency is degrading.
• Suffering is pointless. The religionists’ belief that it is spiritually instructive, and therefore an essential part of life, is dangerous and reactionary.
Instantly, my bad habit of arguing for the sake of being right kicked in. But this was life-or-death, so I guess it was for the best.
First of all, I am not a cat. My mom is not a cat; my sister is not a cat. We are humans, with the ability to love, comfort, and value life. Animals get put down all the time if they’re sick. People do not. I would never “put my mom down” because she is sick. I would, and will, stay by her side until the end.
Though Charlotte’s second point does make me think, I don’t believe she is correct. There are many people who are mentally ill, some without much capacity for self-determination, but they are still able to bring much joy to those around them.
They’re sick, but they can still smile and bring happiness to their families, just by being there. This is far from meaningless.
Third, dependency can be degrading, and honestly, my pride and independence are a few of the traits that I am most scared to lose. However, the type of dependency that HD brings cannot be helped. It is not like a man in his early 20′s who lives with his parents and uses their credit cards. It’s not like a homeless person who refuses to work (and is able) but still depends on charity and roadside donations to fuel his laziness. No, this type of dependency is something that cannot be helped. You don’t get mad at a baby for needing to be fed or wanting a diaper change–because they are babies and that is what they need to live and receive love. I feel having HD is similar in that the illness cannot be controlled by the person who has it. They are fed, changed, and talked to because that is what they need to live and receive love, too.
Charlotte’s last point is the one I disagreed with the most. Everyone suffers in one way or another, and it is for a purpose. If nobody suffered, then no one would be able to realize when things are good. It’s kind of like the idea that if you never experienced hunger (which is a type of suffering), then you would never be able to enjoy food and being full.
People with HD do suffer, but due to mental degradation, I don’t believe they are aware of the fullness of the suffering that people who are not ill see.
I remember my grandfather becoming very mentally ill, and in that, he lost his sense of self awareness. Despite his mental state and non-stop twitching, he spent his days sleeping, eating (LOTS), laughing at the T.V., and rambling on about his past accomplishments. I don’t believe he knew he was suffering, and I never once heard him complain until the day he died.
However, these arguments that swirled around in my head where directed towards the people that I loved with Huntingtons, not myself.
When it came to myself, I hate to admit that I agreed with her points.
Would dying be better than letting the disease take over?
For days, I considered my fate. I wanted to die, but the simplicity of the idea that I craved so deeply was nowhere to be found. So I slept for days and days and days, only getting up to stare at my reflection.
In the mirror, I saw the traces of my mom that gave me my smile, my cheeks, and my eyes. I thought about what would happen if my mom did what I wanted so badly to do.
I would be devastated. Lost.
I would much rather hold her fragile, sick body; I would love her through her mood swings, her chocking, her inability to talk. I would stay with her for hours and make stupid jokes in an attempt to catch a glimpse of her pretty smile.
I saw that in me. In my reflection, she was there. Maybe others thought the same about me. I guess that’s what love is: selfless, unconditional, and sacrificial.
And in that moment, I realized that in trying to be selfless by taking my own life, that I was engulfed in an ocean of self-absorption, drowning.
In Charlotte’s closing words:
I felt a great wave of self-pity, the first since my diagnosis. I felt worthy of being cherished and knew I’d do whatever it took to survive. The case for carrying on can’t be argued. Suicide is rhetoric. Life is life.
Carry on, my friends. You are worthy of being loved through all of your struggles, and the people that love you, and I mean actuallylove you, will stand by your side until the end, and I guarantee you will bring them joy many times throughout your illness.
I’ve seen it with my own eyes.