I only want one gift…
All I want for Christmas is for people to know the real me...
Gail Appelgren, 58
With the snow crunching beneath my boots, I strolled through the town. I loved Christmas. The presents, the songs, the glitzy parties…
But as I walked, admiring the decorations that festooned the shops and cafes, I tried to ignore the stares.
Everybody was watching me. They were staring at the hundreds of tumours that cover every inch of my skin.
But I refuse to cover up. I’m proud of who I am.
When I was a baby, doctors had reckoned the first lump on my chest was a birthmark, harmless.
But then the tumours began to multiply.
As I’d grown, so had the lumps. A new one surfaced every few weeks.
Nobody could diagnose me... until a new doctor started at my GP surgery when I was 12.
Taking one look at me, she said, ‘You have neurofibromatosis.’
NF is a nerve condition, due to a faulty gene, that affects the skin and causes benign tumours.
The good news was a plastic surgeon could remove them.
The bad news was that new ones would continue to appear.
Over the next few years, more grew.
The tumour on my chest was now the size of a football.
At school, I was a target for the bullies.
‘Wart face!’ they yelled, humiliating me across the playground.
Endless sniggering and name-calling.
‘Why can’t I be normal?’ I cried.
‘You’re beautiful to me,’ my aunt soothed. She and my uncle had raised me after my mum had died when I was 3. Aged 19, I had surgery to remove the tumour from my chest. More operations followed. But as one tumour was chopped off, another one would appear. A repetitive, painful circle. Some were the size of a pea, others the width of my fist.
When I was 27, I went with friends to the swimming pool.
Sitting beside the water in a bathing suit, I felt stares assessing my bumps.
‘Sorry,’ a lifeguard said. ‘We’re going to have to ask you to leave.’
Other swimmers reckoned they’d catch what I had. My cheeks flamed. I couldn’t find any words, just wanted the ground to swallow me up.
‘She’s not contagious,’ one of my friends yelled.
Now everyone was looking, pointing at me.
It didn’t stop there.
People wouldn’t sit beside me on the bus, would cross the street to get away from me. My confidence was knocked. But as the years passed, something settled inside me… I couldn’t help the condition I had.
Accepting NF gave me
People would cross the street to get away from me
a whole new lease of life.
Studying hard, I got degrees in Sociology, Psychology and Social Work. But my studies didn’t leave a lot of time for relationships.
Short-term flings never went very far. Men were turned off by my condition, couldn’t bear to touch me.
Thankfully, my close friends were kind.
‘You’ll find someone,’ they’d tell me. ‘Hmm,’ I mused. ‘Doubtful.’ I got a job as a social worker and, before I knew it, I was turning 40.
But soon my tumours erupted. Thousands sprouted from my skin, lining every inch of my body.
Any chance I had of finding love was gone.
Then, in 2010, I got chatting to a man called Tim on the phone. A colleague had given me his number.
A social worker, too, Tim and I had something else in common. Tim also had NF.
Chatting on the phone, we had more than just our skin in common.
‘What’s your favourite music?’ I asked. ‘Folk,’ Tim replied. Snap!
Plus we both loved golf, the cinema, walks with our dogs. We even had the same CocaCola memorabilia collection! Uncanny. Meeting up for the first time three months later, it was clear Tim’s condition wasn’t as severe as mine. But he, too, had been teased all his life.
Bonding over our shared experiences, we became a couple. Then...
In 2012, hiking through a beautiful rainforest in British Columbia, Tim got down on one knee, recited the lyrics of our favourite John Denver song. And proposed! A dream was finally becoming a reality. I was going to be a bride. The vows we exchanged at our wedding had everyone in tears. I told family and friends, ‘Tim came into my life at the exact right time.’ Since then, we’ve been enjoying every moment of married life. But my happiness doesn’t mean the discrimination has stopped. On our way to a holiday in the Dominican Republic with friends, an air hostess approached me. I thought she was offering us a meal or the in-flight magazine. Instead, she said, ‘One of the other passengers has asked whether you’re contagious.’ My friends rolled their eyes as Tim explained. Even now, strangers call me ugly, ask why I’m not in hospital or care. Imagine! But this Christmas, I won’t be hiding my body away. I won’t let the few thousand stares, whispers and nasty remarks affect me. The greatest gift this year would be acceptance. People have no idea the emotional torment I endure, the physical pain I’ve suffered in my lifetime. I’ve had 40 operations. And yet, I am just a normal person. I have a job, a home here in Edmonton, Canada, a husband I adore. Like every other couple, we go out for dinner, to the cinema, look forward to our summer holiday.
So when you see me, please see my smile, my eyes.
Ask me about my condition and get to know my friendly personality.
Soon, you won’t see my tumours... You’ll see what I see. Gail. And she’s pretty great.
‘Other passengers have asked if you’re contagious’