Where I Got Stuck, and Other Stories

We asked our Patient Leaders if they have any stories (humorous or otherwise) that only someone else with SMA or a disability would understand. Here are their responses:

Stuck in an American elevator

Michaela: One of my favourite funny stories to tell is about the time I got stuck in an elevator in Times Square. It was just one of those ridiculously funny moments, as only I could manage luck like that! It was added to by the fact that, being from the UK, we kept saying we were stuck in the lift and confusing the call handler! It’s without a doubt a great funny memory!

I think we all get into these small funny situations and people don’t realise that funny stories happen every day! It’s good to be able to have the funny memories even through something disability-related!

Stuck in a public restroom with my nurse

Chaz: I feel like all my best stories happened in a bathroom, which I’m sure is the case for most disabled people, SMA or not. One of the most memorable was when I was out to dinner with my parents. I was pretty young, maybe around 9 or 10, and our favorite nurse was with us. The restaurant is one that we ate at a lot and is also pretty fancy. Usually I stay away from restaurant bathrooms as they’re typically not very accessible but that night I really had to go. So, my nurse brought me in and I should’ve known it wouldn’t end well as the handicap stall was pretty small and, for some reason, an armoire inside. I mean, I’m talking about a 6-foot wood dresser that I guess was there for aesthetics. I was able to fit my wheelchair into the stall but no luck getting out with that behemoth in the way. The nurse and I were stuck and this was a time before cellphones to call for help. Eventually my mom came to check on us because we were taking so long and ended up busting down the door so I could get out.

Language barriers and medical directions

Ainaa: I was hospitalized for almost a month in 2017 due to a respiratory syncytial virus (RSV). It was the longest hospital stay. I was not in a good condition so the doctor decided to put me on a BiPAP. Wearing the BiPAP for the first time scared me.

On the day the doctor put the BiPAP on me, I made a deal with the doctor: “If I don’t feel comfortable, let me take it off. I won’t wear it.”

Doctors agreed and we decided to try it. A few nurses came to help with setting up the BiPAP. They put it on me and taught me how to breathe by using BiPAP. One of the nurses wanted to explain it to me, but she couldn’t speak English so she asked the doctor how to translate it. The doctor told her that I can speak and understand Malay, so just speak with me directly.

We all laughed after hearing it. Even though I was feeling scared of the situation, that moment made me forget about it for a while.