Why You Should Never Give Up
By Ian | Twitter: @IStedman | February 28, 2018
My grandmother was born in 1926.
My mother was born in 1949.
I was born in 1981.
We all suffered from chronically bloodshot eyes, migraine headaches, fevers, severe arthritis, full body rashes, hearing loss and cold sores. No doctor understood what was causing these symptoms, so they simply prescribed whatever medicines they could in order to help lessen our pain and discomfort. We each learned to simply “suck it up” and live the best lives that we could.
For my mother, living her best life meant helping me to live mine. She didn’t go back to work for 7 years after I was born so that she could care for me. She had learned how to best manage her symptoms (some days this was easier than others), so that she could help me live with mine. I was a little boy who wanted to go outside with my friends and play sports and do everything that little kids were supposed to do. But I was covered in a rash most of the time, suffered from powerful migraine headaches that knocked me out, and had constant flares of joint pain that would come and go within 24-48 hours. I had what we now know to call an “episodic disability” and there simply were no answers.
My mother structured our lives so that she and I were always prepared for a flare. This meant that we didn’t overcommit. I did play sports, but I played team sports instead of individual sports – that way my absence wouldn’t let anyone down. I would occasionally go to my baseball games simply to sit on the bench and be with my team. Sometimes I would leave a hockey game early because a joint had become so swollen that I couldn’t put pressure on it. This was my normal.
I had good relationships with my teachers and school principals. My mother would explain to them as best she could that I might periodically need accommodations. They kept my anti-inflammatories and pain killers in the office, and there was always a dark room for me to lay down in when I had a migraine. My mother had been a teacher in the public system before I was born, so she knew how things worked and always made sure that everyone was prepared.
When my mother did go back to work, she only went back as a part-time supply teacher. She sacrificed her career so that she could be free to come running whenever I needed her. It wasn’t until I was able to care for myself that she returned to her career full-time. She made an amazing sacrifice for me, and it was something I couldn’t fully understand until my first daughter was born sick in May 2012.
As a result of what I learned from the sacrifices that my mother made for me, I was able to fight for a diagnosis for my daughter (full story here: http://www.cbc.ca/1.3776381). My daughter was diagnosed with Muckle-Wells Syndrome in early 2014, a one-in-a-million rare disease that some people die from, but for which there is now a treatment. It is a genetic disease, so my mother and I were subsequently diagnosed (my grandmother was not diagnosed because she was in the latest stages of her life at that time). We were numbers 11, 12 and 13 in Canada at the time. A small group for sure.
There is no cure for Muckle-Wells Syndrome, which means that my mother, daughter and I will be taking an expensive biologic immunosuppressant medication for the rest of our lives (or as long as we have good enough insurance coverage). I did have a full-time career when we were diagnosed, but I have since made it my mission to learn everything I can about rare diseases and Canada’s healthcare system. I have said yes to every opportunity to talk about Muckle-Wells Syndrome and have volunteered wherever and whenever I can. I did not have a background in science or health, so this has been an uphill battle for me with many late nights and sacrifices made. I had to learn quickly, so I started reading about systemic auto-inflammatory diseases (SAIDs) and I learned that Muckle-Wells Syndrome is from a family of genetic diseases called Cryopyrin Associated Periodic Syndromes (CAPS). From there I became involved with the Canadian Organization for Rare Disorders and was inspired to create a CAPS website (www.canadiancapsnetwork.com) so that there would be a disease-specific community space with useful information.
Being sick was a significant part of my identity for 32 years. I never wore shorts or t-shirts because I was worried about people seeing my rash. I always wore a ball cap or sunglasses so that people wouldn’t see my bloodshot eyes. Now that I have treatment and no longer have to live life under the weight of my symptoms, I hope that maybe I can do something to help the next person.
I wake up exhausted most days, but inspired by all the amazing people I have met or come to follow online. I have learned that I am not alone and that my experiences are like those of so many others. I have learned that there is strength in numbers and I have even come to find a new strength in my own vulnerability.
Most of all, I have come to understand just how much my mother has given me. Her sacrifices allowed me to develop the strength I needed in order to provide my daughter with the life that she deserves.
Ian lives outside Toronto, Canada with his wife and two daughters. His life changed dramatically for the better after being diagnosed at the age of 32 with Muckle-Wells Syndrome.
Canadian Organization for Rare Diseases: https://www.raredisorders.ca/