When Your Equipment Breaks
My worst nightmare is the thought of any of my equipment breaking at a time when I need it the most. Whether it be my wheelchair, BiPAP, cough assist machine, or ceiling lift system, all of those are vital to my health and daily living with SMA.
My wheelchair and my ceiling lift: my most important equipment
Of course, I always have backups (including an old wheelchair) in case of an emergency, but there is equipment that I only have one of. For example, my ceiling lift.
That has to be my most important vital equipment besides my power wheelchair because I use it multiple times per day and without it, I wouldn’t be able to get out of bed, use the toilet, or shower. So, when something happens to the lift, my family and I really feel trapped.
Luckily, over almost two decades of owning the ceiling lift, we’ve never had any major problems besides replacing its motor's battery. But the other day an unthinkable event happened.
Left hanging in mid-air when my lift froze
My dad was getting me ready in the morning and was transferring me in the lift from my bed over to the bathroom and onto the toilet. Everything seemed fine as he lowered me onto the toilet when suddenly the lift froze. There I am, completely naked and only half sitting and half still dangling in the air.
My dad and I both look at the lift remote in his hand which had detached from the wire. He looked like he was about to have a heart attack and I could practically see the gears in his head trying to problem solve.
Problem solving under stress
I’ll admit that for a second I was also terrified since we were alone and if my dad was going to collapse from panic there was no way for me to call for help. But then I took a deep breath and remembered that the controller is allowed to detach for other types of remotes to fit on the wire.
I calmly told my dad to connect the wire again. He did but there still wasn’t any movement. However, when he pressed the buttons I heard a clicking noise so I knew the motor was getting power. Maybe he just reconnected the controller backward?
Yup! A simple unplug, flip, and reconnect and I was safely lowered the rest of the way down. The day was saved!
Equipment knowledge saves the day
Later my dad told me that his “almost heart attack” was from trying to figure out how I would use the bathroom and how he would pick me up to get me back in bed. Honestly, I wasn’t even worried about the logistics of that moment. I was mostly freaking out about how to pay for another $20,000 system.
Thankfully everything is fine now and we ended up laughing about it a few hours later when we told my mom the story. But the reason I wanted to share the near catastrophe is that there was something valuable my dad and I learned.
Is self advocacy a part of your daily life?