Cake Day 2020
September 1, 2020
Somehow it feels like cake is insufficient to reflect on the last year. Perhaps it should be the whole bakery.
12 years ago today it all started. The tingling. The hot foot and then the hot leg. Blaming Ian for switching the heating on even though it was 30C outside. Monday 1st September. Labour Day. A day spent in school preparing for an exciting school year to start.
Instead, by Thursday September 4th, it was confirmed – a hot and heavy case of multiple sclerosis.
12 years. What a time. Leaving my career. Getting wheels permanently attached to my bum. Finding a new life in advocacy. Ian leaving us far too soon. And, now, the past 12 months. Not much has happened, I guess.
I started my PhD. That’s something that wouldn’t have happened before MS, and certainly not in Disability Studies, trying to explore the depths of why our society finds it acceptable to put young disabled people in institutions that do little more than provide the most basic shelter.
And I explored my independence with gusto. I went on the bus – I rolled home when there were no buses. I made it through 3 hours classes. I read, wrote, contacted people to build new networks. And I slept. A lot. For every action there is a reaction called sleep. If I thought my fatigue was bad before, now? Being out of bed for 7 hours became an achievement!
Rosarina and her family moved here, to start a beautiful new life, where we would be able to spend lots of time together, and I could be a part of watching the girls grow into incredible young women.
Then 2020. When we thought that 2019 had been rough on us, 2020 said “hold my coat…”
But then, every door that shuts, and all that.
Crystal, Max, Kona and Kai moved in. Life is certainly beautiful. They already had a firm place in our hearts, but watching the 5 critters learn to love each other as they live together – wonderful. And for Crystal and I, sharing our MS ups and downs, strategizing what we were going to tackle next, and then having giggles at 8:30pm because we were (okay I was) too tired to do anything else – blissful.
The world learnt to work the way I do. Who needs to travel to meetings? Zoom. Teams. Webex. Let the meetings come to you. I was no longer the odd one out, asking to be allowed to attend virtually. Everyone was virtual!
Sure, two autoimmune people living together, Crystal and I have had to work out what safe is, and trying to ensure my parents had food in the early months when the whole of Britain seemed to be ordering fromgrocery stores 24 hours a day was stressful. Who would have thought that in September, Crystal would still be going onto Tesco every Sunday to make sure there was a delivery slot available?
So, another year passes, and I celebrate with cake. It is a celebration. Life is made up of many paths. Some we can choose, and some we have no choice but to follow. I celebrate all the twists and turns, and I look forward to the year ahead. Up next? A fancy shmancy bed to make all the zoom meetings more comfortable, and Deefer learning to push (literal) buttons!