Whenever anyone asks what day of the week it is, I can always answer them. It’s written on the blister pack of one of my medications. Knowing what day it is is like my little chronically ill super power. Unfortunately, my chronic pain and illness doesn’t give me a lot of powers, but it does give me a lot of weaknesses. The weakness I detest most is flakiness.
I don’t like to flake out on commitments, and I hate it when others do. But I never know when my back pain will flare up, or my stomach issues intensify. The options become either sign up for things and sometimes flake out, or never sign up to anything and stay home every day. And I don’t want to stay home every day, I want to be out in the world meeting people and achieving things.
Recently I volunteered at the 2018 Freeplay Independent Games Festival in Melbourne. I had a few reasons for wanting to volunteer at the festival. One was that two game designers whose work I adore (Tale of Tales from Belgium) were giving a keynote address, and another was that I thought it would be a great opportunity to meet some new people. I also just wanted to “get out there”. I spend so much time at home, being ill, that I really want to contribute meaningfully to something bigger than myself.
As soon as I found out I had been successful in my application to volunteer, I panicked. I’ve had multiple spinal surgeries and some activities, like mopping or carrying heavy items, hurt my back too much. I emailed the volunteer coordinator, and she was amazingly understanding. She allowed me, and others who had access requirements, to select volunteering shifts early, which meant I could choose ones that didn’t involve any heavy lifting.
Come the day of the conference, I was there nice and early to start greeting and wrangling attendees, and volunteered during the opening keynote – which was my beloved Tale of Tales! I had such a good time volunteering, and was excited for the rest of the day. I went to another talk, and my back started to ache. I tried to ignore it. I went to the green room and ate my sandwich, and took two different types of pain relief. The pain kept throbbing.
My next shift was sitting on a very hard chair, at the registration desk. The pain kept building and eventually I asked the coordinator if I could go home early. I felt like an abysmal failure – I couldn’t even sit at a desk for a few hours. I thought that maybe if I went home and lay down with a heat pack, I would feel better the following day, and be able to make my second day of volunteer shifts. I woke up still in pain, and immediately sent a WhatsApp message to the coordinator, letting her know I couldn’t come in. I spent most of the day in bed, feeling guilty and pained.
Chronic illness and disability is a monumental barrier to participating, even at really welcoming events. I want to volunteer next year as well, but now I worry my apparent flakiness will forgo my being considered. How can I show people that I’m a dedicated and passionate person, when my chronic illness or spinal pain could flare up at any moment, making me need to lie down or rest?
Part of me thinks I should just give up on dreams of being someone who participates. That I should embrace hermitage and just connect with people online, rather than face to face. But while I have formed a lot of close online bonds, it’s just not the same as getting out there and meeting people. Do I forgo the joys of human interaction and contributing meaningfully to projects, just because I’m chronically ill? No. I don’t want to miss out on this integral part of the human experience. Besides, how can I use my superpower if I’m not around people asking “What day is it today, again?”