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Road Trip 2.0

In July, my mom, my Auntie Amy, and I loaded up our giant, red wheelchair van and drove all the way to Florida. Eleven hundred miles! I was going down for a week of therapy with an SCI guru named Ken Bryant (and a little fun, too). It was a long, hot drive, but totally worth it to relax on gorgeous Clearwater Beach and float in a pool a year after my SCI. (Check out the picture below of me in a super stylish beach wheelchair). In mid-October, my mom and I embarked on our second major road trip since I’ve been in a wheelchair. This time we went somewhere not quite as warm as we headed off to see my best friend, Erin, in Chicago!

So, why didn’t we fly? Well, spinal cord injuries come with a LOT of baggage. I can’t just throw some clothes and toiletries into a suitcase and go anymore. Spontaneity is on hold for now. I have to bring medications, a shower chair, two wheelchairs (power and manual), amongst other things that you would never have to think about if you didn’t have an SCI. Obviously, it would be a lot to fly with. And I’ve heard horror stories of people’s powerchairs getting seriously damaged in the airplane’s luggage compartment. One day I look forward to giving flying a go. But for now, we drive!

On the trip to Florida, my Auntie Amy was a huge help — and she provided a lot of entertainment with her great sense of humor. On the Chicago trip, we didn’t have that second pair of hands to help out during the drive. But since my mom is basically Superwoman, we managed just fine. We left on a Thursday and drove about 500 miles, spending the night in one of Marriott’s “accessible” rooms outside of Toledo, Ohio. You’re probably wondering why I put the word accessible in those snarky little quotation marks. Well, let me tell you: Most accessible rooms in hotels are barely accessible. Sure, they make little efforts like moving the peepholes and light switches a little lower, but you know what would be even more helpful? A lower bed so transferring in and out isn’t such a struggle. And how about making the rooms just a little bit bigger and less cramped so I can move around in my chair and not hit the walls, the tables, etc. With that being said, I have gotten lucky and stayed in some rooms that work really well. But overall, I could really teach these hotel designers a thing or two. OK, rant over.

The next day we finished up the drive, which was a little less than 300 miles, and met up with Erin’s mom, Mrs. Moore, who had flown out there from Philadelphia. All in all, it was a great (and much needed) girls’ weekend/getaway. Despite the cold, the wind, and even the snow flurries, we did a lot outside. Don’t worry though, Mom made sure I was warm by obsessively covering me with blankets and scarves and stuffing my shoes with toe warmers. We walked (and rolled) through Lincoln Park (where Erin lives), Millenium Park, the Riverwalk, and the Magnificent Mile. We even did an architecture boat tour, which, to my surprise, was perfectly accessible and the highlight of the trip.

This wasn’t my first time in Chicago. I had gone to visit Erin a month after she moved there, just two weeks before my injury. I flew out there by myself and camped out on an air mattress on her living room floor. Between sightseeing during the day and going out at night, I swear we must have walked 20 miles that weekend. My trip this time around was obviously much different. It made me think about how much life can change in just a few short months. But it also reminded me that true friendships don’t change — even with distance and a new set of wheels.

On the way home from Chicago, we met up with my dad in Cleveland. We’ve been on the hunt for a doctor who can help me regain some more function in my right arm. Lately, I’ve been working with an amazing upper-extremity specialist who has been helping me get appointments with various researchers and surgeons. Right now, MetroHealth in Cleveland is a hub for a lot of SCI research using FES — functional electrical stimulation. The doctor and OT there did a full evaluation, testing my right arm to see which muscles responded when stimmed. Unfortunately, I didn’t qualify for their specific study at this time. It was pretty disappointing. But on the plus side, we got to stay at this really cool place called the Zubizaretta House. It’s a house specially designed for people with spinal cord injuries so that they (and their families) have someplace comfortable, accessible and free of charge to stay when participating in a research study. I have to say, it was such a relief after traveling for almost a week to stay somewhere so stress-free and wheelchair-friendly. Every city should have one! Thank you to everyone involved in the program at MetroHealth!

So, there you have it. Our second road trip since my injury was a success! We’re still learning along the way, but traveling in a wheelchair can be done. It’s a lot of work, but still a lot of fun. And just because things didn’t work out for me in Cleveland doesn’t mean hope for righty is gone. Bigger and better things are already in the works. Stay tuned!

5 thoughts on “Road Trip 2.0”

  1. Love the adventure, Mary, and all you can teach others re design and accessibility for one and all. Proud of you. Hope you’ll visit us in Maine this spring/summer with your mom+grandma. ❤️🌿Beth

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  2. When I first returned to work in my manual wheelchair, I learned that my 22 story office building had only one (or two, depending on who I asked, though I never saw the second one), wheelchair accessible bathroom! I engaged the building management in a mostly cordial series of discussions about this which eventually led to their constructing an accessible bathroom on my floor.

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