Ten years ago today it was the Thursday of the first week back at school. As an elementary school principal, it was a very busy week, but my body seemed to be flagging.
On the Monday, Labour Day, the day spent getting all the muffins and juice boxes together for the welcome back breakfast, a final day in school making sure everything is in place, everything seemed to be okay. I was fit and healthy, but hadn’t been to the gym as much over the summer as I usually did (5 days a week, before school). By the end of the scorching hot day, I thought Ian had lost the plot! I was convinced the heating was on – and that he had put it on – because my foot felt hot! Then my pjs felt hot, then the bed felt hot! Just what had he done to the house?!?
On the Tuesday, it was the first day of school. My right leg was tingling, and I didn’t feel like I was going at full pace – I couldn’t keep up with people in the hallways. I decided I had to get myself back to the gym really soon.
On the Wednesday, I had a meeting before school, so no gym again. My right leg, in particular, continued to feel odd, and the left one wasn’t so hot either. I told Ian that I really had to get back to work at the gym, because of these odd feelings.
On the Thursday, I went to the gym! I could do things that involve my arms, but my legs just weren’t moving right. I went to work and told my secretary, just passing on how odd it felt. She rang her mum, a nurse, and she told her to get me to ring the BC HealthLine. I thought they were exaggerating, but I did it. I went through a kind of flow chart – is it this or that – on lots of questions. At the end of it, she said I had to go to see a doctor immediately. I said I had an appointment for some repeat prescriptions the next day, and I would bring it up then – that seemed like “immediate” to me. She insisted that I go now – I said “it’s the first week of school!’ – she insisted.
I left the office to go to the local walk-in clinic, with just my handbag, hoping there wouldn’t be a line-up, and saying I’d be back soon. Well, I made it back for a visit a few weeks later. I never worked more than 2 days a week again, and within 6 months I had finished work completely. I also never walked “properly” again, and was a full time wheelchair user within 6 months too.
My walk-in clinic appointment took me to the ER which led to being admitted and an MRI of my spine. That showed lesions, and the follow-up MRI of my brain showed more. It was transverse myelitis and MS.
My MS has been called aggressive, and progressive relapsing, but really the labels don’t matter. It has had 6 different types of disease modifying drugs, and showed them all disdain! It has developed a “rare and somewhat unique” type of physical and mental fatigue, which puts me in bed for at least 16 or 17 hours a day. In fact, it’s done a load of stuff which has been downright anti-social!
But this isn’t a tale of woe. This is a tale of what life can be, and of what has happened over the last ten years.
I have made friends who are supporters, shoulders to cry on, people to laugh with. I’ve made close, close friendships that are a joy to have in my life, and without them, my life would be empty. My family has always been there for me, constant, never ending support, that never wavers and brings me so much strength.
I’ve become an advocate for people with ms and for disabled people. I’ve found so many fellow comrades in these battles where we constantly, to use the in-phrase, “speak truth to power”. These women have inspired me to dig deep in myself to challenge the ways in which I approach “power”. To educate myself. To look at every situation as a possibility for change. And to enjoy the small positive changes when they happen.
I’ve rediscovered life as an academic, a student, a life of academic reading. And I revel in the connections, the people, the learning.
I’ve found that technology has become not only even more of my friend, but the indispensable tool that brings some equity into my world. It is always my mobility. It sometimes speaks for me when my voice doesn’t. It is my connection to the outside world. It locks doors and switches lights on and off. It allows me to take courses on the other side of the country, and interact with everyone in a meaningful way.
I’ve spent so much time with two Bernese Mountain dogs. The names have changed as time goes by, but the love and companionship has been never ending.
I’m not saying that having MS has been great and I’m glad it happened! Instead, the phrase “one door closes and another opens” has become the mantra for my life. And throughout it all, I have been felt overwhelming love and support to and from the man that started it all by turning the heating on, on a scorching summer day.