Stupid Things I Did Last Week In Defiance Of MS
Last week I decided I wanted to go to the seriously spooky, grown-up haunted house Legends of Horror at Casa Loma, Toronto’s gothic revival mini-castle that sits just up the street from where we live. For most of October, we could hear the terrified screams of visitors to the exhibit from our balcony, and I wanted in. I had an inkling that this indoor/outdoor 2 kilometre ghost-walk wasn’t maybe the most accessible activity in town, but I ignored that inkling and bought tickets anyway.
How stupid could I be?
The day before we were set to go, I went back to the Legends of Horror website just to see how prepared I needed to be. I read something advising guests with “physical ailments” not to participate. That seemed a little too broad and ignorant for me, those of us with so called “physical ailments” not all sharing the same limitations or abilities. Plus, they also said it was “not ideal” for pregnant women, which lead me to seriously question what kind of person was making the decisions about who should and should not participate in what’s really just some interactive theatre.
I emailed the venue to get some intel, and was promptly told the exhibit is not recommended for walker or wheelchair users; that there were some stairs and tunnels. This still wasn’t very specific. Like, just how many stairs are we talking about? Note: Sometimes people with mobility aids can do a few stairs.
Because FOMO
I was conflicted, and not really sure if this would be too much for me, but the thought of sitting at home with Halloween FOMO while my friends were out having fun, was too much to bear. And since I don’t have a walker or a wheelchair (I have a rollator and a transport chair), technically, the suitability information provided didn’t apply to me. Let’s do this.
The Banker suggested we bring Optimus Prime my convertible transport chair; that I walk as much as I was able; that he would push me as needed, and carry OP up any stairs we might encounter. Problem solved. I emailed the venue with my awesome new plan, and asked again just how many stairs we were talking about.
This is what they said:
“I would still suggest that is Not a good idea to carry that up and down the ‘uneven terrain’ that is part of this Legends of Horror experience.”
Aside from the callous reference to Optimus as “that” (rude), this was GREAT NEWS. “Not a good idea”, is not a hard no. And those quotation marks around uneven terrain? That was enough to convince me that the terrain might actually be pretty even. Grammar matters, people. Plus, they never did answer my question about how many stairs there were, so I decided it was two flights. Two-and-a-half, max. It would be difficult, but I could swing it. Because here’s the thing Casa Loma doesn’t seem to get: People with mobility aids have a whole spectrum of ability. Not all disability is the same, and it’s not cool to just decide something isn’t available to everyone. Just give us the facts, and let us figure it out for ourselves.
In defiance of MS
The night of the show, we bundled up and got ready to get scared. We rolled up to the venue, and a visibly alarmed ticket-taker took one look at OP and said, “Uhm, this is one-hundred-percent not accessible”. I was like, “Whatever. We’ll figure it out”.
And we did. In the end, it was like, 15 flights of stairs, in the dark and under a fog machine. And what took most people an hour, took us well over two, plus a lengthy break at the bar at the midway point. It was actually completely unreasonable for me to have attempted this.
And I’m so glad I did.
In a disease where decline seems inevitable, it’s hard not to measure the passing of time by a yardstick of things I can no longer do. Anything in the grey area of what might be a little too tough or even reckless, forces me to say to myself, “If not now, never”.
So what? It’s just a stupid haunted house. (It was not stupid, it was freaking amazing.) A fun night out with friends doing something a little different, is an experience most take for granted. But there’s this feeling I sometimes get when I’m most aware of MS insidiously creeping up on me, and chipping away at my options. It’s the bittersweet realization that I’m doing something I’ll never do again. It’s the unspoken knowing that, this time next year, I’ll not be physically able to do whatever it is I’m struggling to do this year. Experiences take on added meaning when you realize:
This is the last time I’ll do this.
I didn’t think this haunted house thing would turn into a bucket list accomplishment, but I woke up the next morning feeling satisfied I’d experienced something unique and cool, and like I’d kicked some ass, those stairs being way scarier to confront than the wailing banshees and severed heads trying to spook us at the castle. My ill-advised night out was a kind of Fuck You to MS.
My squad
I must thank The Banker who dodged zombies to haul OP up and down all those steps like a damn hero. And thank you to my squad of patient friends, Trace, Lisa, Chris and Peter: I realize it’s extra terrifying to slow-walk through a graveyard. Thank you for not handling me with kid gloves; for not trying to talk me into the cautious, reasonable, thing, and for supporting my choice to keep bulldozing ahead, even when it seems really fucking stupid.
ON INSTAGRAM
Back to
Happy Halloween A! I got so much from this mic drop of a post, and for my own life. I miss you lots. xoxo, S
So true the part about people deciding for us what we are allowed or not allowed to do! I’m glad you did it and had fun. Hope you get many more opportunities like that!
Good on ya! Thrilled that you successfully scared the crap out of 15 flights of stairs. That will teach those stairs not to mess with you.
Aw thanks, S. Missing you too!
Thank you! Sometimes we have to make our own opportunities.
Thanks Joe.
As I was hunched over my cane and struggling to get up the stairs, I think some people probably thought I was part of the show. Nobody was messing with me.
Well done, well told (as usual)! Bravo!
So glad you enjoyed it. I agree totally that places need to deliver more specific information on what activities are involved. "12 flights of stairs, or two ladders, or climbing into a rocking boat 3 feet below the decks" or some such would be so much more helpful.
Thanks for reading Marie!
You so nailed this article!
Thanks for reading!
Good job!
I’m so glad you went. I’m even happier you succeeded! You are such a talented writer, and I love every article.
You’re right about knowing that if you think you might, try! Next year WILL be too late. I don’t like grieving those things that I know I’ll never do again.
Thanks for reading and for commenting Robin. You're absolutely right, we've got to do all the things now!
Yes,yes yes! I just got my own version of OP and in December am taking it and my own version of the Banker to Ajijic Mexico. I have been visiting Mexico for many decades and it is laid out, in general, like your haunted house. Everywhere. All year long. So the cobblestone streets and rebar sticking out of the cement and narrow aisles in the mercado are just gonna have to be patient with me. I’m going on that slow walk in the sun. Not ready to cross it off the bucket list. ❤ Wonderful, inspiring read. Muchas gracias!
Amazing! OP has been to Mexico a few times. And yes, cobbles are the worst. Apparently the makers of OP are introducing a new model next year that will have tires that are better able to cope with cobbles. Little by little mobility aids are getting better and better.
Thanks for reading!
I’ve seen the new model (jungle green)and wrote to Rollz to ask if I can get those pneumatic tires for my rollator. Got a prompt reply that yes, effective around March 2020 they will be available.
You’ve inspired me to cycle to Casa Loma this week while the weather permits it. I’m more scared of rain soaked roads and cold weather than skeletons and gore.
Enjoy Halloween!
Being cold is really the greatest fear of all.
Stay dumb (except for opiates and cigarettes).
Deal.
Hi Ardra
We’re going to Kailua-Kona on the Big Island of Hawai’i for a month. I’ll be doing things I’m not supposed to be able to do. Thanks for the posting.
A
~
Sounds dreamy. Looking forward to hearing all about it!