What were you for Halloween?
As a child, I was often a princess. I loved getting dressed up in beautiful gowns and sparkly shows. Growing up, my Father referred to me as His Little Princess. And as a young adult, I still have that craving to be a real, bonafide princess. Not the derogatory, slang version the way the word ‘princess’ is sometimes used today for a woman who feels entitled to be idolized and pampered; but the pure, idealistic, beautiful definition of princess. The princess I’m talking about is that which evokes a young woman using her social status and influence toward the betterment of society. I can think of nothing more challenging, or more meaningful. To me, working towards the betterment of society is the pinnacle of thriving.
So being sought out and chosen to share an afternoon with such a personally beloved individual, I was truly honoured and excited. The Lieutenant Governor of Ontario, the Honourable David Onley, hosted a Luncheon at Queens Park in Honour of the Queens 60th Jubliee Celebrations honouring Her Royal Highness, Princess Sophie, The Countess of Wessex.
On this particular afternoon, there were five guests in attendance: John Tory, Hélène Campbell, Neil Hetherington, Jon Dellandrea, and myself. I was there in my role as a disability advocate.
I was in a tragic car accident in 2002 as a 22 year old student in fourth-year at Queens University on spring break en route to Florida. I was a back-seat passenger wearing my seatbelt, which caused the majority of my internal injuries when the vehicle flipped 16 times. I lost two-thirds of my intestine, my major organs failed, I was resuscitated three separate times, and the 82 injuries on impact led to staying in seven different hospitals, enduring over 50 surgeries and 100 procedures, over four years, until I was finally admitted back home as a person with multiple disabilities and health concerns. My intention was then – and still is – to thrive, for myself and for my cause.
So I was at the luncheon representing my cause. But it was actually my role as a person in need that connected her Royal Highnes and myself.
Hélène was sharing her amazing story with the luncheon guests, and Her Royal Highness inquired about what ailment had caused her need for a double lung transplant. Hélène shared that she has idiopathic pulmonary fibrosis and His Honour joked that it was not an easy name to remember. Her Royal Highness suggested that Helene think up a new name for the disease, or think up a symbol, to allow lay people to recognize the condition.
Her Royal Highness wanted to make a comparison to an organization she works with that not only uses a short form for the disease but also a symbol. In her excitement she momentarily forgot the name, and after a few moments of silence I declared “its called epidermolysis bullosa“. All eyes were on me. Her Royal Highness was shocked that I would know of the very rare disease. She asked “How do you know anything about it?”, and again I felt all eyes on me. “Because I have it”, I replied. Because, I do.
I was born with a very rare skin disorder that is sometimes called EB and sometimes referred to as the Butterfly disease. It is sometimes called the Butterfly disease because the skin of those born with the disease can be as fragile as butterfly wings. I am lucky in that my condition is quite mild and I seldom suffer from blisters or ruptures. Because I was born with the disease, it has been a lifelong challenge. This is undoubtedly where my journey to help those in need was born.
However, because my Father was also born with the disease, and I was the only child in the next generation of family members to also have the disease, my Father felt very guilty. He felt it was his fault that I was suffering from the challenges of the disease. In an effort to alleviate his pain, we rarely spoke about the disease and the challenges I faced growing up. Of all of the causes I have helped over the years, I have never rallied for my own life-long cause. Now that he has passed, I feel that it is simply divine intervention that I would meet a champion of the cause. I am happy to share that Her Royal Highness’ Lady in Waiting and I are working towards my involvement with the cause.
Princess Sophie, the Countess of Wessex, has my dream job. She is a bonafied princess in every sense of the word. She is not only of royal blood, and married to royal blood, but she carries on the challenging legacy of serving as a princess: selflessly helping others. She is thriving in her own life and is helping others to thrive in their own. And, if everything works the way I’m hoping and believe it is destined to, Her Royal Highness will be helping me to help others thrive too.