On either longer travels or day trips, I aim to have fun
Preparations are key with SMA, even when seeing museums or theater
I’ve written plenty about how hard I work to keep healthy and prevent emergencies. I work just as hard to figure out new ways to have fun, immersive experiences that can accommodate my physical challenges.
Last year for SMA Awareness Month, I wrote that my dream was to travel across the country. For this year’s observance, I’m writing about other types of trips I like to make so everybody can have a better idea about who I am as someone with SMA.
As I said, I do love to travel, but my ideal day trip or multiday vacation is one where I go to museums, live theater, or both. One reason I enjoy museums, other than my joy when I learn, is that most of the ones I know are accessible for wheelchairs. Most live shows also have accessible seating as long as you make reservations far enough in advance.
When I’m not writing a column or doing advocacy projects, I’m constantly looking up museums and plays to attend. I don’t like to go out when COVID-19 levels are high or during flu season, so I plan for when the risks are lower.
When I go to a museum, I pack in a lot for a short amount of time. When I graduated high school, for example, I went to Chicago to visit three museums in three days, one each day. In a two-day trip to another location, we went to two live shows. Again, one a day.
Short trips of two or three days are ideal for me. Besides my mom, I take two nurses. I’m constantly on the go during these trips, so after a few days, my nurses are usually worn out and ready to go home. My mom will agree with me that I have more energy than everyone else.
Having fun, staying organized
It’s a lot of work to pack all my medical supplies, then unpack them at our destination. Every last one of my supplies is needed, though. Living with SMA, if you’re traveling thousands or even hundreds of miles from home, can be intimidating.
Anything can happen, and in my experience, everything has happened. Don’t let that scare you off from going on vacation, though. It’s totally doable. But making it happen means bringing all the medical supplies and equipment you can imagine so you can handle any situation that comes up. And even then, bring a backup of everything. You should see how full of supplies and equipment my wheelchair-accessible van is when we get ready for a trip. It’s a lot, but we organize it well.
It also helps to bring along someone handy. On one recent trip, a nail in a parking lot made the van’s front bumper fall off. Thank God my nurse had the skills to help my mom fix the problem and the strength to put the bumper back on!
Some medical equipment is too big to take in my van. For this reason, my mom has called supply vendors that are local to where we’re going. We have those businesses drop off what we’ll need on the day we arrive at our hotel or Airbnb.
Among all of those vacation considerations, I just say to myself, I’m going to have fun no matter how much stuff I have to bring.
I’m glad to make everyone aware that I’m just as determined to have fun on trips as I am to stay healthy. That approach helps me soar and celebrate SMA awareness!
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.
About the Author
Leave a comment
Fill in the required fields to post. Your email address will not be published.