Melissa Nichols, creator of #HatsforHope, was having a really great life until, one day, she wasn’t.
She was an active, happy single young woman, enjoying life on the Danforth, when, at the age of 28, she started suffering chronic tailbone pain.
Nine months, and nearly a dozen confused doctors, later, her vision got blurry.
An optometrist noticed an inflamed optic nerve in her left eye.
After an emergency surgery, she was told she had a brain tumor.
A year later, she was shocked again to learn a piece of that non-cancerous tumour had broken off and traveled down her spine, something that’s only happened seven times in the whole world, Nichols says. That led to radiation treatment for her tailbone.
That was followed by full head and spine radiation.
Four days after completing radiation treatment, a friend of a friend provided her with a hat, a kind gesture that has grown to become the #HatsforHope initiative.
She was invited to be photographed for a book of affirming photos and to provide a “life message” to other people going through a rough time.
From that experience, she decided to take the journal she kept through her recovery, as she regained her strength and the ability to do things most people take for granted, like walking, using utensils and putting on her makeup.
That journal turned into her book, “Day by Day,” chronicling her struggles with cognition and recovering from the treatment for her hemanioblastoma.
Over the past few years, Nichols has gone on quite the journey: In addition to her tumour treatment, she’s met and befriended Simon Kendall of Doug and the Slugs, who not only wrote the forward of her book but dedicated a song to her at a show in Edmonton – she and her mom took a flight out from Toronto to be there for the show — and she’s collected more than 1,300 hundred hats that were distributed to other brain tumour fighters and survivors. She’s also become a public speaker who uses humour to help her through the dark times.
“If I don’t make jokes, I feel very depressed and down,” she says. “I’m not masking it, it makes me feel good when I joke around. I laugh at my own jokes.”
And if people don’t laugh with her? “If they don’t think it’s funny, I laugh even harder,” she giggled.
“If you stay silent about it, you suffer more,” she added.
In 2016, she started #HatsforHope in conjunction with the Patient and Family Advisory Committee at Princess Margaret Hospital, collecting more than 200 hats in the first year. After that, Nichols has led the effort independently, collecting hats from people who make them and provide them to her, which will later be distributed to people going through brain tumour treatment.
“It’s soul-filling for me,” she said. “This is my energy boost. That’s what drives me to do this. People say ‘it’s just one hat, I wish I could’ve done more,’ but I’m astonished.”
Since the hats are all handmade, some by people who are using the hats to cope with their own afflictions or heartache, each hat is that much more special. “They’re thinking of who they’re making these hats for, someone who’s had a brain tumour. The positive energy in each hat makes them very special – almost magical,” she said.
Nichols is excited to work with the Brain Tumour Foundation of Canada for this year’s #HatsforHope effort, asking people to post selfies wearing their favourite hats and using the hashtag to drive awareness for brain tumours. Canada is believed to have the highest incidents of brain tumours in the world.
Her friend Simon will be participating this year as well, wearing one of the grey #HatsforHope tuques provided by the Brain Tumour Federation while Doug and the Slugs prepare for their 40th anniversary festivities.
“Melissa originally asked permission to quote lyrics from the song ‘Day by Day’ in her upcoming book of the same title. I was curious about her story and we went from an email conversation to speaking on the phone,” Kendall said. “She shared drafts of the book with me and I was hooked.”
He found Nichols’ story “unique and compelling,” and later felt “honoured” to write the forward.
“Two important women in my life had struggled with challenges: My mother was quadriplegic from a car accident and my sister has right-side paralysis and brain damage from a severe brain aneurysm,” he said. “I have always admired their courage in dealing with adversity, and Melissa’s story resonated deeply with me.”
More than a year after working with Nichols on her book, his young grandson, Skyler, was diagnosed with a brain stem tumour at just 10 months old. Thankfully, Skyler is doing wonderfully today, but seeing him and other children going through treatment at Sick Kids Hospital has stayed with him.
“We are extremely lucky that a doctor in Spain recognized Skyler’s symptoms immediately – without swift intervention, we might have lost him.”
Nichols is grateful to Kendall and the team at the Brain Tumour Foundation for their interest, support and involvement.
“Last year I handed out the hats and this year there were a lot of people who shared how much that hat meant to them,” Nichols said. “Hearing from people who were making the hats, how it helped them cope, how it made them feel, either as a survivor or making the hats, it’s wonderful.”
By the way, more than 600 hats were collected for distribution this year. Keep your eyes on your social media feeds today!