Living with SMA requires resourcefulness and determination
These qualities add to the richness of our lives
Written by |
Living with SMA entails so much more than physical challenges and caregiver shortages. Our lives are much fuller and richer than that.
The riches are in our day-to-day experiences, as well as the wisdom and maturity that SMA bestows upon us. This often results in other qualities, such as resourcefulness and determination, which are necessary during outings.
Leaving my home to go out into the community makes me feel like an astronaut. We both bring a lot of technology and equipment with us.
The riches of resourcefulness
When I go out, I need to bring not only my equipment but also backups for everything. This is part of being resourceful.
A few days ago, while out in the community, my suction machine wouldn’t work. As a result, my tracheostomy, which serves as my airway, couldn’t get clear. Thankfully, I had a backup suction machine that helped me breathe better and prevented an emergency.
Knowing how to troubleshoot is also important. Last June, I rode two hours in my wheelchair-accessible van to see a play. Instead of using straps to tie down my wheelchair in the van, I use the EZ Lock docking system, which is installed on the floor of my van. I just drive my chair onto the dock, and it automatically locks tightly onto a bracket on the bottom of my chair. The EZ Lock is pretty secure. Even if I tried to drive my chair forward or backward, I wouldn’t be able to until the docking system was unlocked.
About five minutes before we got to the play, my hand was in the wrong position on my wheelchair controls, causing my chair to try to drive forward when I didn’t want it to. But because it was tightly secured in the dock, I was only spinning my wheels. Since my chair was trying to move but meeting resistance, it turned itself off as a safety measure.
However, when we got to the playhouse, the power button wouldn’t activate my wheelchair. The docking system unlocked, but the chair seemed to have no power. My wheelchair is too heavy for my mom or nurse to push manually.
We spent an hour calling people on the phone for help. It was the weekend, so the wheelchair repair company was closed. We had the idea to press the reset button, but we couldn’t find it, as I’d gotten the chair only a few months prior.
We eventually found it by looking up online manuals and videos. Once my mom pressed the reset button, the “on” button started working again, allowing me to drive my chair.
Now that we know where the reset button is, we can be more resourceful with troubleshooting. A similar situation happened earlier this month, and resetting the chair was again the solution.
The riches of determination
Even though we fixed my chair, I still missed an hour of the play. That’s when I became determined not to let technical difficulties win. Instead of seeing only part of the play, we decided to return at a later date. Everything went smoothly the second time, and I enjoyed myself.
Even though the situation was frustrating, I was determined to find the good in it. My mom and my nurse could have easily panicked, but they calmly addressed the problem until it was solved.
If you have SMA or another chronic disease, don’t be intimidated by outings. Make a list of your needs and all the technology and equipment you’ll require. Have a backup for everything, and know how to problem-solve. There may be times, though, when you have to call for help, especially if it’s an emergency.
Living with SMA is an adventure involving perseverance and determination. This SMA Awareness Month, let’s recognize these riches. Along with faith, they are the fuel that helps me soar like a rocket!
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, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
Leave a comment
Fill in the required fields to post. Your email address will not be published.