Recently, I attended one of my favorite events of the year, the North Carolina Comicon. I’ve attended this show for five years in a row, and every staff member, guest, attendee, and wildly imaginative cosplayer who goes is family to me.
This year, my parents went away the same weekend as Comicon for my mom’s birthday, leaving me to take care of the house just like Kevin in “Home Alone.” Thankfully, I didn’t destroy anything or have to fend off a pair of thieves, but I did watch TV and eat plenty of junk food during that 48-hour period.
I had many logistical things to figure out when planning for the Comicon weekend. With everything my parents do for me, including taking care of me on the weekends, I wanted to ensure that I had coverage so that they could enjoy their vacation. To do this, I had to ask myself several questions. Who would take care of my primary needs like getting to bed at night and then up and ready in the mornings? Who would drive me to and from the con each day? Who would check on my dog during the day and feed her?
I have so many friends and family who are more than happy to help me, so getting all of these things taken care of was relatively simple. I reached out to three friends who I go to cons with, and because I have connections with the NC Comicon staff, I was able to get them all into the show for free. People who hang out with me long enough can usually get stuff like con passes, movie tickets, and comics for free. I’m basically the equivalent of a nerd drug dealer.
It took me a little longer to finalize plans for overnight care. I initially thought of just asking my regular caregiver and close friend Randy to stay with me, but I wanted to give him a break since he’s with me throughout the week. I’ve been looking for a Saturday morning caregiver for a while now, and I have respite hours in my care plan that I could use to pay someone the weekend of the con. If you receive government services for caregiving, there will often be additional hours in your plan that you can use for things like long weekends and other special occasions.
To find someone for both this weekend and for regular Saturdays, I contacted a nursing assistant agency about a month before the con. They said they would let me know, but after a couple of weeks without hearing anything, I grew skeptical. Finally, they did send a certified nursing assistant who had availability on the weekends.
The problem: This person called two hours after their designated start time to say they had overslept. Fortunately, this was still a week before the con and my parents were at home to help me, but this incident was a red flag. That morning, I posted the following in an SMA Facebook group: “How many weekend caregivers does it take to screw a lightbulb? Oh wait, that would require them to show up.”
Thankfully, Randy was more than happy to take care of me on the weekend of the con. I also had a friend from Virginia stay with me and ride with another friend and me to the con. We hung out, met some of our favorite comic book creators, ate too much, and geeked out with dozens of other nerds all weekend.
My highlight was moderating and participating in several panels this year. My favorite was a panel about disability in comics and cosplay, which I spoke about, along with my friend Christine Getman from the organization Magic Wheelchair.
I expected only a few people to attend, mostly because I was used to only having a few people show up to my panels in previous years and instead opt for the ones with big-name guests. Instead, we had a full audience. People were genuinely interested in learning about our experiences at cons, media representations of people with disabilities, and our stories in general. There was even a young woman in a wheelchair who attended both of my panels that Saturday. She took notes the whole time and is working on starting her own podcast. I’m not crying; you’re crying!
Comic book conventions are about so much more than posing with cosplayers and having fun. Cons are about community and being part of something that’s bigger than me. Now, if you’ll excuse me, I have a stack of new trade paperbacks to read.
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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