It wasn’t until she was gone that I discovered life did not last forever.
Laughter generated from endless summers together, playing childish games of cops and robbers, hadn’t equipped me for death. The long, empty comedown in the days after Christmas, rejuvenated by swapping toys we didn’t like, would never happen again. All those conversations I’d had with her about what I would do when I grew up became meaningless.
Nothing could have prepared me for the untimely death of my 5-year-old cousin, Amy.
I knew she was ill. The hushed whispers and silences from adults when I walked into the kitchen to ask for juice told me far more than if they had just carried on talking. I guess it was when Amy lost her hair and had a feeding tube stuck up her nose and taped to her cheek, that I knew it was something serious.
The last time I saw her she was going to a hospital too far for me to visit.
One morning soon after, my parents picked me up early from a sleepover at my nanny’s house. I usually spent the weekends there, wasting away the early Saturday mornings of my youth in front of the television, eating toast cut into animal shapes. I walked home in my pyjamas, hugging my cuddly toy dog, Woof.
Strangely, I had to try and hold back a giggle when they told me she had died.
I put this down to nerves. At 10 years old I didn’t know how to receive this information. Death seemed too final to be real. Seeing all those sad faces, strong faces, hidden behind hands or tissues, it just excelled the pressure I felt inside me. The pain radiated into my jaw as I tried to hold back the laughter. I made my excuses and left the room as quickly as possibly. That’s when the tears came.
It had only been about a month or two since Amy died when my parents noticed a large, bald gap running down the middle of my scalp from my forehead to the top of my skull. The bareness was so soft to touch, like babies’ skin or peaches. I liked it. I knew there were other hidden patches, but I didn’t tell them.
It got worse and eventually I was made to go to see a doctor.
I asked him if I had leukemia like Amy. He explained that it was the chemotherapy that made her lose her hair, not the cancer. I was diagnosed with alopecia, the trauma from the funeral given as the cause. The doctor sent me on my way with a sugar free lollipop, prescribing time as my only healer.
It was my mum who first caught me hiding upstairs, pulling it out.
I think she had suspected something wasn’t quite right when she couldn’t find the evidence of my thinning locks in the brush. She still washed it for me and was confused why the plughole in the bath wasn’t blocked with the amount I was losing so quickly. By this point I had lost half a head of hair.
It took a long time to start growing back again.
Where thick, pretty plaits once donned my head, two bemused braids now hung limp against my face. They whispered into my ear and taunted me about my weird obsession. It didn’t matter how strange I looked, the anxiety would grow inside of me until I plucked away at my scalp like a butcher with a chicken. I loved to hear the snap of it as I ripped the root from my scalp.
It would take me ages to find the perfect strand, but perfection only lasts so long.
I soon started to panic that I would not have any hair left. The baldness didn’t bother me – I knew Amy had been brave enough to cope with it – it was the thought of having nothing left to pull out. Eventually I scared myself enough to stop. I was lucky.
I still have bad days with it. I still have bad weeks.
Physically, trichotillomania has left me with a small, remaining bald patch at the back of my head, no bigger than a large coin. It’s still a challenge not to sit and pull until there is nothing left. Sometimes it’s completely out of control, yet often I feel it’s the only thing I am in control of.
I no longer want to be ashamed.
Instead, what I want is to be able to visit different hairdressers without embarrassment or brush my hair with confidence in front of strangers. I no longer want to fear revealing a strange type of nakedness, but also a compulsion I don’t quite yet know how to tackle myself.
My cousin lost more than her hair 20 years ago. Now it’s time for me to be brave.
Follow this journey here.
If you or a loved one is affected by body-focused repetitive behaviors, you can find resources at The TLC Foundation for Body-Focused Repetitive Behaviors.
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Getty image via Pontuse
Donna-Louise is a mother of three noisy boys. She is passionate about helping survivors of childhood sexual abuse. Currently working on her first novel. Follow her on Twitter @donnaloubishop.
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