Meet the survivor behind #HatsforHope
“I’m not masking it, it makes me feel good when I joke around. An optometrist noticed an inflamed optic nerve in her left eye. “They’re thinking of who they’re making these hats for, someone who’s had a brain tumour. “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. “If they don’t think it’s funny, I laugh even harder,” she giggled. “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. She’s also become a public speaker who uses humour to help her through the dark times. “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. Canada is believed to have the highest incidents of brain tumours in the world. “This is my energy boost. Thankfully, Skyler is doing wonderfully today, but seeing him and other children going through treatment at Sick Kids Hospital has stayed with him. 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. 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. 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. Melissa Nichols, creator of #HatsforHope, was having a really great life until, one day, she wasn’t. 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. After an emergency surgery, she was told she had a brain tumor. 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. That was followed by full head and spine radiation. 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. 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. “It’s soul-filling for me,” she said. That journal turned into her book, “Day by Day,” chronicling her struggles with cognition and recovering from the treatment for her hemanioblastoma. 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. That led to radiation treatment for her tailbone. “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. The positive energy in each hat makes them very special – almost magical,” she said. 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. That’s what drives me to do this. “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. 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. “Melissa originally asked permission to quote lyrics from the song ‘Day by Day’ in her upcoming book of the same title. Keep your eyes on your social media feeds today! “If you stay silent about it, you suffer more,” she added. I laugh at my own jokes.”
And if people don’t laugh with her? Nine months, and nearly a dozen confused doctors, later, her vision got blurry. “If I don’t make jokes, I feel very depressed and down,” she says. I was curious about her story and we went from an email conversation to speaking on the phone,” Kendall said. 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. “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.