Friedreichs Ataxia has, unfortunately, led me to use an assistive device and others may have to use something too.
This should be a reminder to always be mindful of how important an assistive device is.
I am going to share a true story, that I shared about a year ago on a FB post, but it wasn’t on my blog & the nonFBers missed it; so here it is again—to paint you a scenario I and (possibly) others had to go through to regain independence. *I am not sharing this for sympathy or any sort of justice. Time has passed and everything is fine now!*
I went to a local baseball game (you can assume where. Not naming names, to avoid social shaming) with a group of friends and we did not have handicap seats; so, in my carefree way, I hitched a ride on a friends back to get down the stairs to our seats. I asked the Usher that was patrolling that section where I could leave my wheelchair and he reassured he’d be close by and to fold it up and lean it against the wall by the stairs, so it would be in his radar.
After a few innings, I had to go to he restroom and got piggy backed up to the main level. Once we got up, I looked left, looked right, no wheelchair and no Usher. Once I plopped down somewhere we started looking around and within 5 minutes the Usher came waltzing back. I asked him “why isn’t my wheelchair here?” and he instantly responded in panic mode “I’ve been on break for 30 minutes. It was here when I left!” “Oh no, this isn’t good!”
After more people getting involved in the hunt, the big honchos got called and the stadium was on lock down. Serious shit. No one could leave without a big look down, but let’s face it… it’s a wheelchair, ya can’t miss it.
Anyway, enough time has passed that if it was stolen, the thief is long gone and out those doors by now.
The clock was ticking, and I felt so helpless- I mean, that wheelchair is practically my legs. It is my independence.
Once the game ended, I was in the same boat of no wheelchair and the stadium employees gave me an ‘apology gift’ and a golf cart ride out to the car. I said “what am I supposed to do when I get home? I don’t have my wheelchair!” All they could say was “I’m sorry and we’ll have more answers for you tomorrow.”
Luckily, I had a very crappy hand-me-down wheelchair at home to use in the meantime. But don’t forget, the wheelchair topper I use on my car, is only designed for my now “MIA” wheelchair!!!
I had many mixed emotions of being sad, mad, frustrated, embarrassed, dependent…
I did file a stolen property to St. Louis PD that night.
The next day, after many back and forth phone calls to the baseball organization, the only news I got was “We’re working on it. Our team is having a meeting today on what to do for you.”
That turned into 7 days of “we’re looking into it.” Can you imagine going seven days with no legs and no one to direct you in coping with that?!
Life still was happening. There was no pause button. My kid still needed to go to and from school. I still had to find a way to get to my scheduled appointments. I still had to attend & get around for my work events. I had to have friends throw my “not so good” wheelchair in the trunk and help me in and out of the car.
A lot of back and forth phone calls and finally they got something. A coordinator from the organization sent me info on a guy who stole my wheelchair and was selling it on Facebook Marketplace. I almost threw up. I couldn’t believe I was looking at my wheelchair that this person stole right outta the park!
With my amazing Facebook skills🤪 I tracked down this guy quick and contacted the Granite City, IL police department about this person and MY property. Two officers went to his house; he was not home, but his dad was, and freely let the officers in the home to take my wheelchair. Once I received that phone call, I was so beyond relieved.
I went to Illinois to retrieve my wheels, but if I wanted to press charges, it was going to be sticky. The crime happened in St. Louis, MO and they took it over state lines to sell it in Illinois. So, I needed St. Louis police to hand the crime over to Granite City, but that meant I couldn’t take it incase they needed to print it. I tried for a couple days, but after the no call backs, I decided to opt out of pressing charges so I could actually use my wheels again. I left with it thinking “Just be thankful you got it back in one piece. Karma will get that guy. I’ve got my independence back!”
After what felt like the longest week ever, I was reunited with my independence. I write this story to share the bad that can come from something so dire to someone else. And to know your blessings. Be kind and aware of others needs.
This wheelchair is my legs; how would you feel if someone took your ‘actual’ legs and you were left to figure out your every move?! Scared? Upset? Angry? Helpless? Dependent? All the above. It’s shitty that I actually have a box in my mind that I’ll need to pull out and react to when my “legs” are stolen, if that ever happens again. Or the wheelchair breaks. Or needs maintenance. No matter what kind of “legs” you have, they’re important!
I was blessed with this customized wheelchair from vocational rehab and let me tell you…these aren’t cheap. It’s hard to remain humble when you find out someone stole something like this, just so they could get a little cash for their next high.
But you dissect it, and realize that person has some deep unresolved scars that they need help with. At the end of the day, I do not wish ill on this person, but hope they found some healing & inner peace.
So, all in all, everyone’s got something going on in their life to deal with, but spread more understanding that mobility users spend time, energy and money on showing just a wee bit of independence. Rare is just fine, but don’t take my wheels!