I am a freelance columnist for Friedreich's Ataxia News. I was recently published on my column, My Darling Disability, and I wanted to share it here, too. You can either read it by following this link, or just keep scrolling below.
Last weekend, a situation I dread as a mobility aid-dependent person happened: I drove to a store to run a quick errand, and when I opened the back of my SUV, my walker wasn’t there.
It had been a busy Easter weekend with my family, filled with egg hunts, play dates, parties, petting zoos, church, egg dyeing, and delicious brunches. It was fun and chaotic, like most holiday weekends are. We would switch off between my husband’s truck and my SUV, moving my “car walker” from trunk to tailgate and back again.
When I finally snuck away for a couple minutes to get my son one last Easter basket filler, I parked in a handicapped-accessible spot and made my way to the back of the SUV to grab my walker. My stomach dropped when the liftgate opened and I saw the empty space where my walker usually goes.
I instantly started debating: Could I make it the short distance into the store and then just hold on to the display cases? Or, do I waste 30 minutes returning home, grabbing the walker, coming back, and then shopping? I felt so stuck. I was stranded and frustrated.
I was so angry that not having my walker rendered walking 10 yards into a store, grabbing the gift, and coming back to the car an unsafe gamble. Most 32-year-old moms wouldn’t have to think twice about that — it’s unfair that I do. I called my husband, Kyle, to ask him if he knew where the walker was. He said, “It’s in my truck. I’ll be there in 10 minutes.”
Because I was operating on a tight time frame and having a relatively “good” day, as far as my Friedreich’s ataxia symptoms go, I made the brave (or foolish) decision to shop unassisted while I waited for him. The looks that I received made this seemingly simple journey unique.
First, two ladies around my age passed me when I got to the front of my car. I held on to it as I waited for them to pass. They just looked me in the eyes and smiled. This pretty much never happens anymore. I almost always have my walker, and people look at it when they look at me. I realized that to these two ladies, I was “normal.” That boosted my confidence, and I thought, “I can do this! I can try to be ‘normal’ for 10 minutes to do something for my son!”
As I walked to the store, another lady crossed my path. Upon seeing my struggling, disjointed gait, she looked at me with concern. I remembered that look, the one that says, “What is wrong with her? Is she OK? Is she drunk?” I just smiled and tried my best to keep appearing “normal.”
I got to the door at the same time as two other young ladies, and they gave me the “go ahead” wave. I realized that I hadn’t received that signal in ages. Normally, people see my walker and go out of their way to help me with doors. I was struggling to swing the heavy door open enough to slide into the store, and one of the ladies hopped over and held it. I said, “Whew, thank you!” and noticed the friends exchanging the “Seriously, what is wrong with her?” glance. I forgot how much that glance devastates me.
After my ungraceful entrance, I teetered over to one of the display cases, and a store employee came over to assist me with my selection and purchase. I noticed her noticing my disability, so I said, “I normally use a walker, but it wasn’t in my car, so my husband is bringing it to me.” I could tell she was still trying to figure out what was wrong with me, but at that moment, I didn’t want to get into it. I just wanted to do what I went there to do.
After I made my selection and headed over to check out, my husband walked through the doors with my walker. He was like a knight in shining armor! He kissed me on the cheek and placed the walker right in position. I never thought I’d be so happy to see it.
The store employee seemed to have a lightbulb moment and realize what I meant when I explained my trouble walking and the reason for gripping the display cases. My disability suddenly made sense to her. It was as though my walker justified everything.
This entire experience made me realize that I am not “normal,” I am disabled. I am unable to walk unassisted 99% of the time. But with the proper devices and precautions, I am still capable. I am able to do what needs to be done. I am able to do what I want to do most of the time. I have limitations and I have accepted and adapted to them. But more than that, I am proud of the maturity it takes to accept help and stay safe by using a walker.
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