It’s a special day today because it’s Rare Disease Day! “Rare Disease Day is an opportunity to enlighten the public about issues affecting rare disease patients such as overcoming health inequities - including the lack of understanding around rare conditions and challenges patients must face to even get an accurate diagnosis,” said Peter L. Saltonstall, President and CEO of NORD.
It has me reflecting on what’s transpired since last year’s Rare Disease Day. A lot has changed in my world and in the world at large since leap day 2020. Last year we were blessed with a leap year and an extra day and I don’t know about you but I think 2020 would be the last on the list of years I would ever want to have an extra day. This year’s Rare Disease Day falls on the day after a full moon and I’m reading that as an auspicious sign.
The cons of the past year have been innumerable. Personally, the heaviest of them being the death of my loving grandfather and my dear psychotherapist. No concerts, no long afternoons in the sun with friends, no family gatherings.
It’s been a year since I’ve seen my physiotherapist, osteopath, and acupuncturist. My in-home personal support workers have halted for about a year, for my safety. So I wash my hair twice a month if I can manage it and end up wearing the same clothes over and again.
Last March, I started and shortly after had to stop my PLEX treatments. I have had weird bone growths/deformities that haven’t been biopsied since it’s considered an exploratory procedure.
I slowly lost my ability to walk more than within the confines of my little bachelor apartment, but I got my power wheelchair and with it, greater freedom and independence.
The pros also include launching this site and connecting with Our Odyssey. My advocacy journey boomed with plenty of opportunities for me to shine and I got the privilege to meet so many incredible zebras and friends. Telemedicine finally became a thing and thank goodness for it.
I adopted my two magical little rabbits, Violet and William. My beautiful nephew Benjamin was born and I got to meet him and feel his warm energy and soul. The family grew even bigger, with the birth of Dawson, my cousin’s first child, and who I consider being my little nephew as well. I was able to have two extended stays with my parents which was wonderfully soulful. I got to deepen my relationships with my closest friends who have supported me throughout this pandemic.
I’m more appreciative of the little things since I’ve embraced a slowed-down pace to life. I befriended the isolation and let the grief in that I have been resisting for too long. I broke free of the confines that I had put on parts of myself and my story and in the silence something clicked. Your perspective changes when you decided to be vulnerable, to be authentic. It gives you a new lens through which to see the world. A kaleidoscope of beauty. I feel I’ve created a whole new world for myself within quarantine.
I was reading a book for a book club I’m partaking in and came across a captivating part where the author tries to get the reader to put themselves in the shoes of the elderly. What she wrote felt like a peep into what my life is like. It goes like this:
“Do you remember the last time you were sick enough to stay home in bed?… If you were sick for a week or more, you started to get cabin fever. Now imagine that you were going to be like this for the rest of your life. And the only prospect ahead is that you would have less and less independence as time goes on. This exercise gives you some idea of what it would be like to be elderly, confined to home, to a chair in the living room, to bed.”
Replace the word elderly with chronically ill and you’d swear she was talking about me. This lack of understanding has been a big source of my frustrations. Maybe if more people used this same exercise to empathize with those of us who live with rare and/or chronic conditions, it might not seem so bleak. I think that’s what Rare Disease Day is all about, raising awareness about the nuances of our lives and the grace with which we zebras live. So this Rare Disease Day 2021, I call on you to put yourself in our hooves and compassionately understand our unique and magical stories of resilience and courage. Every stripe has a story.
Oh, and if you have any spare dollars, consider donating to Our Odyssey or the National Organization for Rare Disorders (NORD). You won’t regret it ☆
Check out this cute infographic from the XPOSE team for Rare Disease Day
For those who are curious, this is the book I referenced above.