How 'Mobility Fluidity' Makes My Vacations With Chronic Illness Fun Again
I want to invent a new phrase which I haven’t yet seen. It is borrowed from other social science phrases like “gender fluidity.”
The term is: mobility fluidity.
I’ve seen others talk about this… “I can walk but sometimes I need a wheelchair.”
My goal is to empower anyone who limits their vacation plans, their local tourism or their life because it either hasn’t occurred to them to use a wheelchair, or they are nervous about it or, worse still, they don’t feel “worthy”– they aren’t “that bad.”
Let’s set the record straight.
I can walk. I do walk. My journey towards owning a wheelchair came by me naturally.
The first use was at our annual Minnesota State Fair. It was easy. I rented an electric scooter and had a surgery sandal on each foot from foot surgeries. “Visible” disability helped me feel more comfortable and less “fraud” like.
But let me tell you… I don’t know if I’ve ever enjoyed the fair so much. I was easily able to go from one end to the other. I even got to the second floor of the big grandstand stadium! I never had to consider “how much pain or dizziness or misery is it worth” to go to any particular spot.
Next up was a cross country trip for Thanksgiving. We decided to meet up with my in-laws in Atlanta to show the kids where their dad spent his early childhood. I was still dealing with foot surgery difficulties (likely EDS acting up from the surgeries) so I knew to rent a wheelchair if I wanted to actually enjoy the city.
Mind you, this was my first hand-pushed wheelchair experience. There were some screams (me), a lot of stress watching curbs, walls, doorways… But it was great! So, so, great. I even went to the Coke Museum, which if you ever want to go, is very gracious with ADA accommodations.
That wheelchair rental was for 30 days. We ended up wanting to buy one for my husbands 40th birthday in Chicago. You’ll quickly learn renting is more expensive then owning if you go the basic wheelchair route.
I love Chicago but the year prior, for my 40th, over half of it was spent in serious pain. The only time I was “less in pain” was sitting to eat, though eating creates its own pain (gastroparesis.)
Like most of us with invisible disabilities, in my case hyperPOTS, vasovagal syncope, scoliosis, viral asthma, gastroparesis, arrhythmia, and likely mast cell activation syndrome and Ehlers-Dahlos syndrome (those two are on waiting lists for experts), I only posted the fun times on that trip to my social media friends and family.
Nobody cares that I was assessing every step, every possible tourism destination, by a pain-o-meter.
Nobody sees the frantic search for a bench when you just can’t keep going.
Nobody sees the sweat, the wooshing brain, the dizziness, and the joints screaming for quiet.
And for sure nobody sees the total and complete shut down that happens. For me it lasts two to two-and-a-half weeks. I barely function and lately I fight debilitating depressive anxious mental goo while in that dark fog-like recovery period. I’m learning to ignore the darkness, but it is not enjoyable at all.
Fast forward. We’re now back to a successful trip to Atlanta with a wheelchair and my husband’s birthday coming up. My husband and I went to a local medical supply company and found a fantastic wheelchair for about $300.
Our next Chicago trip? Night and day difference. I thoroughly enjoyed the city, the streets, the Planetarium (except scraping my fingers in a tight corner! Ouch.)
My husband? He was beyond liberated to walk, walk, walk to his little heart’s content. He was able to go anywhere without this constant awareness of my pain-o-meter.
The side benefit of wheelchair use when you’re not elderly? My husband said he got tons of sympathy looks, especially from women. We joke his sexiness rating went way up because he was helping out his “poor, helpless” wife. We died laughing rather than choosing to be offended at the inspiration porn nature of it all.
We even managed to do all the public transit with only one whoops non-ADA station.
The single bad moment was a woman at a restaurant walking right past us when we were clearly in line. My husband managed to quickly move my wheelchair and we assertively reclaimed our spot with the host.
Here’s my trick: I am not naturally one to look at people. Maybe it’s because I live in Minnesota and eye contact is “too aggressive.” Or maybe it’s because I’m not the most observant soul (that’s putting it mildly). So did I get stared at? Maybe. Did people think all sorts of things when I walked to crowded restaurant tables? Maybe.
Did I really care?
Finally, I found my liberation. At least for big adventures.
My hope is this story encourages you to consider a wheelchair for a big adventure. Ignore the world, and take back your life.
You’re worth it.
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Thinkstock photo by Wavebreak Media.