Traveling with SMA
When it came to my level of independence, I have been pretty lucky. An area of my life that was always a little difficult was traveling.
After I graduated college and started earning money, I wanted to travel. In my early 20’s I started losing my ability to get up from a chair independently.
Traveling became more and more difficult
This became an ugly struggle from my teens up until then but I was still able to do it. After I lost that ability, it made traveling much more difficult.
Several of my friends had shore houses that I would go to. I wasn’t able to climb steps anymore.
I required assistance getting up and downstairs in their homes. This could be a funny sight after a night out at the bars. Spending long weekends at the shore was the extent of my traveling.
Preference to stay local
In the spring of 2018, I started a speaking gig. When this opportunity started, I kept myself on the “local” list.
This meant I would only go about 2 hours away from my home. This way I wouldn’t have to stay over in a hotel.
After about 6 months I started to receive offers outside of the “local” area. This meant overnight stays and sometimes even flying.
I had flown a handful of times in my younger years. In 2018 it had been almost 15 years since I’d been on a plane.
Challenges of traveling when disabled
When I began to start receiving regular offers to travel, I sat down with my partner Suzanne to discuss.
I was thrilled when she agreed to travel with me. As many of you know, traveling when you are disabled can be a challenge.
I’m extremely lucky that Suzanne was willing to take on this job. It is a job. Even though we are in a relationship, I understand the extra work I require when traveling.
We started flying up and down the east coast, from Boston, Massachusetts, to Orlando, Florida. Suzanne and I traveled out to the Western United States. We made it to Portland, Oregon.
Since the Covid pandemic, my talks have been over Zoom. I miss getting out and traveling to new places.
Recent travel with my significant other as my PCA
In March of 2020, Suzanne became my full-time personal care assistant. There are pros and cons to having your significant other be your full-time PCA. I’ll be writing about that in future stories.
One of the many pros is having the flexibility to travel. In the Spring of 2021, I was able to get out and take a long road trip.
Suzanne and I spent the better part of 3 weeks visiting our family. I was able to visit my grandmother’s home for the first time in almost 20 years. I was also able to visit my aunt and cousins.
We also made a few stops on our own, checking out towns we have always wanted to visit. Suzanne helped me live my lifelong dream when we drove to Key West.
I used to overthink travel. Having a great partner who has opened up a new world to me has changed my circumstances. I hope all of you get to experience travel too.
Have you, or someone you know been diagnosed with SMA?