From a walking interview in Toronto with Ottawa’s Hélène Campbell and how she discovered a rare lung condition which took her on a journey that continues to inspire all those with whom she speaks.
Story and photos by Spencer Wynn.
“I kind of love that British accent”, Hélène laughingly admits. In 2011, at the age of 20 she packed her bags and flew to England from a desire to travel and a zest for life.
Feeling tired from hefting her heavy backpack, she boarded a train from London to Scotland. She figured her decreased lung capacity was caused by a touch of asthma; after all, her siblings had been diagnosed with asthma so it made sense. During the train trip, Hélène sat next to an older gentleman who took an interest in her cough.
“That’s not asthma. You need a chest X-ray”, the gentleman stated. He turned out to be a respirologist and told Hélène her cough sounded a little out of the norm. In the course of the conversation, Hélène learned what a cough should sound like, and why hers was not sounding right. Thanks to that conversation on a train – in England – with a doctor who happened to be an expert on how lungs should sound – she started her real journey that would test her in ways she could scarcely imagine.
On her return to Canada, a CT scan and an X-ray showed that the damage and scarring in her lungs did not match the symptoms of asthma. Hélène was admitted to the hospital for two weeks of testing and a lung biopsy. She was diagnosed with Pleuroparenchymal fibroelastosis, a rare form of lung disease. It is a form of fibrosis characterized by thickening and scarring of the upper lobes in the lungs. The doctors determined she would be put on the list for a double lung transplant.
As with so many things bigger than ourselves, a complex system takes over and time compresses. “I only waited three months; however, those were the only months I thought I had left. I was admitted when they told me they had a suitable organ match. On April 6th, Good Friday, 2012, I was wheeled into the operating room and woke up Sunday, April 8th, with new lungs”.
She celebrated her 21st birthday in the Intensive Care Unit of Toronto General Hospital. Not being able to eat or drink, Hélène craved the smell and taste of food. She asked visitors to eat in front of her so she could savour the memory of what it was like. The hospital staff were so intrigued by this request that they devised a plan! They would put drops of Strawberry Sunshine, Booster Juice on her tongue so she could enjoy the sensation of the taste but then would suction it off her tongue so she would not swallow the sweet juice which would cause complications for all the medical tubing keeping her stable.
Hélène has tremendous respect for the dedication of not only the doctors and nurses she met but everyone else in the healthcare system as well as the other patients. She is philosophical when it comes to life and what it means for those facing transplantation of any kind. “I would encourage people waiting to keep the faith and not lose hope.”
“I wanted to feel that there was a purpose in all of this. The way you handle the wait will affect those around you, and will influence those who look up to you. I know it feels that your life is on hold as you wait for a transplant. Life is not on hold, it is just different and you are adapting to the new (temporary) normal. Don’t let your health situation take over your life. You need to take it over.”
“You don’t have to go through something dramatic in life to be tested for courage, to be tested for resilience,” Hélène says of life, post-transplant. “Life is not all rainbows and butterflies,” she says. “You do have periods of hopelessness.” She should know because she struggled with hopelessness but in the end, with supportive family, friends, other patients, and her medical team, Hélène is back to her vivacious self, quick to smile, always laughing and ever grateful for life.
Hélène’s lungs were donated by a singer in Ottawa. Although they never met, she experienced the donor in another way. This experience is mystical and mysterious and happened in a dream two days before the transplant. In her dream, she eerily describes “I woke up and there was a man standing over me. He was this tall man, long hair, looking at me. I closed my eyes in fear and grabbed my mom’s hand before opening my eyes again. I saw the man walk away, turn around and look at me. He smiled and continued to walk away.”
Never having experienced a dream like that before, she felt uneasy and told her parents about it. They thought perhaps the dream was inspired by something Hélène was reading and dismissed it. That was until a few weeks later when her parents were chatting with a journalist friend who was working on a story about a singer who had donated his organs. The journalist described the donor to Hélène’s parents and he was exactly as Hélène had described in her dream. Hélène can only think her dream was a message when the donor visited her to say, “You will breathe more easily now.” As Hélène says, “You can’t make this stuff up. Things like this would scare me!”
Hélène went on to require another transplant in 2017, but she does not feel her first transplant was a failure. Four years later, she found out who the first donor was and is very grateful for the gift of the singer’s lungs. She would love to meet his parents to thank them. The lungs she received, though temporary, carried her through important times in her life. She was able to stand with her sister when she was married and she was able to travel more and experience life because of that donation.
“I can call myself a double-double”, (in Canada, a double-double is a coffee with a double serving of cream & sugar), Hélène says with a smile. September 2017, Hélène required a second double lung transplant. “The gifts I’ve received are so precious to me, ”she says of her two transplants. Because her energy levels tend to be lower and her immune system is fragile, it is difficult to work in a traditional business setting, so she devotes her time to inspiring others. She volunteers at a soup kitchen in Ottawa, a role she loves. Laughing, she also says she works at Dairy Queen one day a year, on Miracle Treat Day, when all proceeds from Dairy Queen Blizzards go to children’s hospitals! Hélène also volunteers for the Canadian Donation and Transplantation Research Program as well as speaking with many people and organizations about her experiences. She is a champion of education about donor cards and registration. She has a special perspective and a unique voice that is being used to inspire people to become donors.
Being a savvy social media user, and wishing to take advantage of the then, new phenomena of viral messages, Hélène created a short video about the need for organ donors. She asked all her friends to tweet the video and to tweet Justin Bieber to ask that he retweet the video. Shortly after the city-wide tweet storm, the Trillium Gift of Life called to tell her family that donations were up 500%. The next day Justin Bieber retweeted her video and mentioned her.
Growing up we all have idols, and Hélène is no exception. After inspiring so many on the social network the story did not end there. Someone else saw Bieber’s retweet and picked up the phone. In 2013, after an initial Skype call, Hélène’s dream came true. She got to meet her long-time idol, Ellen DeGeneres, in studio on the Ellen Show. You can see a CBC piece about Hélène and Ellen here:
Today Hélène is doing well. She comes to Toronto for medical tests less frequently than before. She is always mindful of her health and tries to keep healthy. As we walk, she is proud to say that she is down to only 13 drugs twice a day. “That’s down from 49 drugs just six months ago!”
As we sit together in the sun behind the E. J. Pratt Library, part of the University of Toronto, we are surrounded by old stone buildings that look as though they belong in the Harry Potter books. This is a special place for many reasons. “The U of T campus is like Hogwarts, ”she says laughing“, because of the beautiful stone buildings. It’s this place I’ve been able to come to as a place of comfort in the midst all the instability. It’s like if anything was out of my control, I knew Hogwarts was in my control in the sense that it was going to be here.”
Asked which Harry Potter character to whom she would most relate, Hélène is unequivocal. “I hope I would be like Neville Longbottom in the sense of doing what’s right, like sticking up for my friends if I have to, and being courageous when I have to, but not being the hero”, she laughs.
Both the U of T campus and the forested inner-city, Queen’s Park, were milestones in Hélène’s recovery and a measure of her returning strength physically and emotionally. Out of the hospital and living in a family friend’s home nearby, she would set out daily with her walker as she recovered. Each day she would walk a little farther. The comfort of the old stone university buildings became a backdrop for her recovery and a place of refuge.
Nearing the end of our walk over deeply familiar ground, Hélène took me to the wide curving hospital hallways that in the past had offered her shorter but no less ambitious milestone in her recovery following her second transplant. We quietly walked the hallways of Toronto General Hospital as she recalled, “It’s interesting walking these hallways because there are all these little markers that I’d set in my head of accomplishments and how I was doing. So, one of the things I would set myself to do was if I could walk one day to the phone booth without feeling short of breath or sitting, and keep going further and further and further in these milestones”.
Asked about her happier memories of spending so much time at the hospital, she again laughs. One thing that brings her pleasure is working on her Instagram account, @hospitalhues which was inspired by all the typical hospital colours one sees. “I am always getting so inspired by things around me”. But her biggest pleasure was to visit the tiny Starbucks in the hospital lobby to get a latté and an oat bar!
As her mother arrives to joins us in the spacious glass lobby of the hospital, our time is up. Hélène needs to begin her tests, as she has done so many times before. Just being with this remarkable young woman for a few hours has been a tonic. There is nothing more inspiring than listening to someone who is selflessly putting themselves out there in the world to tell a story, to give hope to others and be an example of what we can do for others.
From a train carriage in England to the comfort of Hogwarts Toronto to the pastel colours of her hospital hallways, Hélène says good-bye with a hug, an infectious laugh and her easy smile. One cannot help but feel humble.
Asked what message she would like to give, Hélène says, “I would love to give a shout-out and let them know I am forever grateful to donor families all around the world. The fact that they can give someone and their family the greatest high while living their greatest low”.
Learn more about Hélène here: http://www.helenecampbell.com
Learn more about the Trillium Gift of Life here: http://www.giftoflife.on.ca/en/
Learn more about the Canadian Donation and Transplantation Research Program here: https://www.cntrp.ca
Hélène in her own voice
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