The Ebb & Flow of Traveling with an SCI

Life is nothing but highs and lows. In the words of Ol’ Blue Eyes “you’re flying high in April, and you’re shot down in May”. But hey, that’s life. And if you don’t know Frank Sinatra then I suggest you listen to his classics. My point is that everybody goes through the ebbs and flows of life. Some Monday’s are great and some absolutely suck... much like today did for me. Kass and I made lodging arrangements for the week so that I could go to a drivers rehab program at the VA to learn how to use hand controls to drive again. We (mostly my hardworking girlfriend) loaded up into the van with a week’s worth of stuff to prep for our hotel stay only to get all the way to the VA and find out that the van is broken down and the rehab was canceled. Typical VA bull shit... but what nobody ever seems to think about is how complex it is for me to stay somewhere outside the comfort of home. The logistics that are required are very stressful, luckily I have a very persistent woman in my life. ❤️

This life of spinal cord injury certainly comes with its set of struggles. One of them is the fact that nothing can really be spontaneous anymore. Everything takes planning. No more filling a back pack with a few days worth of clothes and toiletries and loading up into my truck or Harley for a few days away.

Imagine this situation.

You are in a wheelchair and you want to go on a getaway for a weekend. What are you bringing? Are you planning on showering or using the toilet? Well, you have to bring your bulky commode chair. Going to have to lock into the van for the drive? Looks like you’re traveling in the giant power wheelchair which means that you’re packing the manual chair if you plan on using it. Can’t forget to pack the wheelchair charger and an extra seat cushion in case something happens to the one you’re on. How do you transfer into the bed? Can you use a slide board? No? Looks like you’re bringing the portable Hoyer lift. Can’t forget to bring your medications for nerve pain and spasms... Do you have all of your medical/bathroom supplies? Make sure to pack extra warm clothes just in case you get the chills for absolutely no reason at all... Grab the toothbrush splint and the foam boots so you have ankle support at night while you sleep. Okay now time for the room reservations.

Is there a threshold to get into the room or a step up into it, that’s a no go. Is it a first floor room? Is there space under the bed for the legs of the lift so I can get into the bed? Is there a roll-in shower? Is the toilet lowered? Okay okay the desk receptionist said yes to everything, better look at online pictures to double check. Alright looks pretty decent. 

Time to load up into the van. You get in first because everything else is getting loaded around you like a sick game of wheelchair Tetris. You get driven a few hours to your little getaway and show up at the resort or hotel. You get out first, excited to see the little home away from home. As you drive your heavy chair through the door way... wham! You’re stuck. Send in the girlfriend to expect the room... 

She comes back to you trying to hide her disappointment but you know... this whole thing is a no-go. Time to scratch the plans. You load back up and attempt to find a new place. What’s that? No accessible rooms available? Okay, let’s just head back home. What does accessibility even mean to some people? Grab bars? Lowered light switches and peep hole door? Sure that would help... if only you could even get into the room right?

Welcome to a vacation attempt. 

This is unfortunately a very common occurrence. What people define as “accessible” can vary immensely. It’s very unfortunate because the ADA (American Disabilities Act) was signed in the 1990’s you would assume that every place would have to conform to a certain standard. It’s crazy how something as simple as having something blocking under a bed or a lazy hotel worker on the phone that “knows” the bed is good can ruin a vacation. 

And then there are certain hotels and vacations or businesses that are perfect or incredibly accommodating. Some at first glance don’t look like they would be accessible at all and then, the next thing you know, I’m rolling around the room or hotel without a worry in the world. Unfortunately, learning about what is accessible and what actually works is all about exposure and trial and error. So the learning experience actually requires... experience. You can only prep and research so much before actually testing the waters. 

It is a fairly defeating feeling watching Kass unload a fully prepped weekend’s worth of stuff from the van. She’s come to know that each attempt is just that, an attempt. It’s a sad and harsh reality. We make do though and we have had some incredible getaways!

As much as we love being homebodies, we love to get out and explore. The feeling of getting out and nailing a getaway together is incredible. Once we have a place that we know works, its added to the list. This is the reality of traveling with a spinal cord injury. It’s is all a learning experience but believe me, Kass and I are learning! 

Next time that you throw a few days worth of stuff into a bag or suitcase and head out for a get away, just stop and think about how blessed you are to have that ability. The simplicity of travel isn’t something that a lot of people think about but damn, do I miss it. I miss being spontaneous and living carefree. I hope that your future vacations are great and relaxing!

God Bless!