With Halloween approaching, I wanted to take a moment to talk about the energy and extra effort it can take to join in on events like Halloween when you have a rare skin disease, and that the effort is sometimes absolutely worth it.
One major challenge I always had with Halloween was the reality that, whether I was a kid or a young adult, I had such severe sensitivities to face paint or makeup. It always felt like it took some of the fun out of the event, or the wind out of my sails, when dressing up. When I was a kid, I often begged to have my face painted like the other kids going trick-or-treating; the reality both my mom and I knew was that I would last a few minutes before the reaction and itch would get too severe and I would have to wash it off, but my mom always let me try. She would remind me it would probably go south, but if I insisted, she let me go for it and never made me feel bad when it didn’t work out, and we were washing it off moments later. Over the years, we got more creative with buying make-up from brands I already used, just in different colours, or just dropping the face aspects of costumes altogether, going with headpieces or something else.
The other major challenge was the reality that in Canada there were times that trick-or-treating meant going out at -30°C. Needless to say, with my struggles in the cold and staying warm, this took some of the fun away, but again, my parents were amazing about helping me put my costumes over parkas and snowpants, having hot shot heaters in my mitts and letting me go for a little while even if it wasn’t as long as others could stand. This always let me feel included and like my condition didn’t mean I needed to miss out, just adapt.
As I became a young adult and started going to parties and events on my own, my parents and family had given me all the tools I needed to find ways to go enjoy myself, but adapt. Some years I didn’t have a lot of energy, so I would adapt: a small gathering of friends, joining the party for an hour before heading home, and other small ways I could accommodate my energy levels. If the event was cold, having little hot hand and foot heaters on me, especially the sticky ones I could put in my clothes; or adapting a costume idea to a warmer outfit, a diva with a big coat, having a shawl over a dress, just little ways to accommodate my needs.
These changes helped ensure that having CMTC didn’t mean I didn’t get to take part; I just had to adapt; and that inclusion meant and still means the world to me. Yes, many of my childhood Halloween pictures look different from those of some of my classmates and friends, but I have photos of me being involved, being there and participating, and that means the world to me. It also taught me that even in everyday life, there are ways to adapt and alter; you just need to find them.