It seems “Me Before You” is raising a sea of voices. I think that’s good. I’ve read several, including a recent one from Allegra Keys, who writes eloquently. She mentions she can’t address what it’s like to think about life pre-disability so can’t comment on the “wanting to be dead” aspect of the protagonist.
Well, I can.
I haven’t read the book nor am I likely to see the film after having seen those mediocre trailers. I have limited time; Hollywood dreck is something which doesn’t fit into it.
But I can speak to the truth of wishing I were dead following a disabling accident. This is going to be a longer post so tune out now if you choose. If you stay, thanks for coming along for the ride.
I was 13. I began to rouse from a coma in which people were discussing me as if I were already dead. I realized that I couldn’t move, couldn’t open my eyes, couldn’t speak. I didn’t even yet get that I was hooked up to four different tubes.
(someone else’s unfortunate experience, no pix of mine)
But I could hear what they were saying and it wasn’t good.
“Poor thing. Maybe it’s better if she just passes over”, someone, a nurse? was saying. “She’ll never be the same. She’s probably got brain damage. I heard the doctor say that she’ll likely be severely retarded after this”.
Those were confusing words and I drifted in and out for days, fragments just like that coming into my consciousness.
“Nyla, can you hear me? Please blink your eyes if you can.”
Man, I fought like hell to blink my eyes. I fought like hell to get back inside my body any way that I could. I struggled and struggled to remember how to do it. How do you blink your eyes? Why can’t I open my mouth? What is wrong with me?
Shapes moved past me. Energy forces came and went. I heard my mother’s voice once though the fog asking, “how much longer”?
Somehow, some way, at some lost point in time, I opened an eye. Barely, then fell back into the mist from the effort of doing so. But my mother and father were beside and had seen it. They screamed for the nurses, who came, checked me, and told them perhaps they’d imagined it. But I knew that I’d done it. I’d come partly back and I was determined to do it again.
It feels just like this.
Flash forward two months. I am at last home. I have a Frankenstein scar, a wide ditch, actually, which runs ( mercifully), just behind my hairline (though I am still bald with mere stubble growing in).
I have a drain implanted in the back of my skull which is basically just linen sticking out, oozing (to prevent infection from riddling my brain). It must be changed daily: an excruciating process which makes me cry as it is dragged, skin sticking to it, out of my head, day after day, until finally my skull is numb there forever. I am officially a numbskull. Smile.
I then must wear a customized, army green, fiberglass helmet underneath my pitiful wig in order to protect my head because HALF of my forehead is missing. My forehead just dents inward. I spend hours staring at my brain pulsing beneath the thin membrane of skin which shelters it from the outside world. I find that amazing as well as frightening.
I speak like someone who has had a stroke. Words come in strange configurations. I think I’m making sense as these thoughts come out of my mouth but the look on people’s faces let me know that I am not. My brain is rewiring itself slowly and sometimes, apparently, the wires cross.
I literally have to re-train my body to shit. It took a doctor to help because I just couldn’t remember how to push and I kept ending up with impacted bowels.
Now, I am lucky and I know it. I did relearn how to walk, how to talk (though I still have a kind of verbal dyslexia when I am too fatigued), yes, even how to shit.
After a second brain surgery, they removed the last of the bone fragments from the tissue and screwed a plate into my forehead, closing that pulsing mystery.
Though I spent half a year in special education being ignored with the rest of my peers, I made it out of there. Some of my friends did not (and I vowed then to fight for them, my friends in that corner classroom hell, and I have).
But remember, I was only 13.
I had just had my first periods before the accident and they stopped completely. Without my hair I looked like a boy, albeit with a hideous Frankenstein scar from ear to ear. One I didn’t believe my hair could possibly ever cover.
No one wanted to be my friend. I developed permanent gran mal seizures as a result of the trauma, causing me to occasionally black out, lose control of my bladder, or worse, my bowels and limbs.
I was’t allowed to participate in extra curricular activities because they were afraid another impact would do me in. I couldn’t eat my lunch in the cafeteria with the other kids because they were afraid if I was jostled too soon too hard I would, indeed, become more “brain damaged”.
My family was thrown into deep poverty due to the costs of my hospital stays, two brain surgeries, specialists, equipment needs, etc, and my friends, we had been poor before. Dad’s mill job didn’t have sufficient insurance to cover such a catastrophic event for his step daughter. No one helped them.
I hated myself and I hated my life. I couldn’t see it ever getting any better. I was a freak, I was ugly. I believed no one would ever love me.
I wanted to die.
Once, in a fit of hysteria, my mother screamed at me, “This is all your fault, this poverty we live in! If it wasn’t for you we’d be fine. I wish you’d died.”
“I wish I had, too.” I screamed back, hurting deeply but refusing to show the grief. Anger had more power. “I wish I was dead!”
And then, I realized that it was true. I wished I was dead. 
So, I do not find it hard to understand how someone whose life has been dramatically changed might feel that way. How they might think that being dead would be preferable to living. How they might fall into a void of depression which, even when it lifts, leave them imagining death as a better alternative.
Yet, I didn’t ultimately choose to die. Sorry, Hollywood!
I wasn’t rich and I didn’t fall in love with my carer yet still choose to off myself, and the system isn’t making big bucks out of my “tragedy” while negatively feeding public perceptions about what it means to become disabled when you began as an able bodied, or temporarily able bodied person. I lived.
Just like those of you who are reading this. Just like all of my friends with disabilities are doing. Just like the people I don’t know who have disabilities, or do not have disabilities, are doing. We are all living our lives to the best of our ability.
And you know something else? I’m glad I chose to live.
I think I’m a much better human than I might have been as a result of my experience. And as a bonus, I discovered theatre. I even got to share the stage with muppets. Bigger smile.
Nyla McCarthy with muppets.
Children’s Theater Network and Kaiser Permanente in partnership with their touring health education program, Professor Bodywise’s Traveling Menagerie. 1986
Still, I can, and do, understand wanting to be dead when your life has fundamentally altered course from where you thought it might be headed. Especially as you grapple with the lack of meaningful inclusion and accommodation which exists in our world for people with disabilities, or confront the biases, prejudices, pity and dearth of real opportunities.
But, and this is a big but, I think making noise and fighting for rights and showing what talents and skills we possess while living and loving and laughing and growing is a much better choice than death.
So there, Hollywood. I hope you are listening.
