One day I went to the local mall, entered the elevator and made room for a young mom who was pushing a preschool age boy in a stroller.
I pushed the button to the second floor and smiled at the preschooler. He looked at me, surveyed my chair and asked, “What are you doing in a stroller?”
His mother turned beet red, avoided eye contact and immediately began to apologize for her son’s question. I just started laughing. It was, and still is, the best question I have ever been asked! Reassuring his poor, embarrassed mom that I did not mind his question, I found myself chuckling about his inquiry throughout the day.
It did not offend me. It did not hurt my feelings. It did not make me angry.
Instead I appreciated the curiosity and honesty of this little one. He didn’t know what a wheelchair was… he didn’t understand paralysis… he didn’t care that I hadn’t walked in years. He just wondered why I, an adult, was riding on the elevator in a chair with wheels. Similar to his ride.
I love children and their questions. They are so innocent and inquisitive. Young children are trying to figure out their world and asking questions, especially “why,” is part of their discovery process. I think that it is normal to look at someone who looks “different.” And of course queries arise. When I see someone who isn’t the same as me, I want to ask questions too. Unfortunately as adults, it can come across as intrusive instead of inquisitive.
For me, I enjoy talking to kiddos because I think it teaches them that although I may be sitting, I am just a normal person. (Before anyone comments on that statement… normal is relative!) I also believe it is important to teach them to be kind and empathetic to others who struggle with a disability or a difference. Another critical lesson is to teach kids to be respectful of medical equipment. For example, my chair is not a toy. My joystick and buttons are off limits because my wheelchair is my lifeline to the world. If it breaks, I am stranded.
I was a substitute teacher for about 8 years at a local elementary school. I allowed time at the end of each school day for the kids to ask me questions because they were curious. I thought I would answer some of those questions to give a little insight to paralysis.
How fast does your wheelchair drive? I started out in a manual chair but after years of wear and tear on my arms, I was switched into a power chair. My last chair went 10 miles per hour which was almost too fast. Sometimes I would hit the joystick and the chair would tip backwards because it accelerated so quickly. My current chair only goes about 3.6 miles/hour. Back in the day, the faster chair was nice because I could take my kids on bike rides through the neighborhood and actually keep up with them. Now that I am an old lady, I guess 3.6 mph is fast enough. No… I lie… I like going fast!
How much does a wheelchair cost? Thankfully most of it is covered by insurance and I can get a new one every 5+ years, but they average about $15,000-$30,000 depending on what you need. I paid money on my last chair for the ability to raise my chair up about 6 feet. It is nice to reach things off the top shelves or just to look people in the eye!
Do you drive? Yes… I have a very expensive used Dodge Caravan that has a ramp for me to drive up and into the van. I took driving lessons to learn to drive with only my hands. While I have hand controls, my car still has foot pedals for others to drive it normally. One interesting fact is I had to be paralyzed for six months before they would teach me to drive so that I didn’t have the sensation to use my feet in an emergency. Also I had to take both the written and driving exam again to get licensed to use my hands.
What do you miss the most about not walking? As silly as it sounds, I miss swinging on a swing. Growing up, we had a tree swing and I always loved just going there to swing and relax. I also miss not being able to go to visit people because I can’t get into their homes. Stairs make visiting family and friends challenging. One of our family friends built their home entirely accessible on their first floor so I could visit anytime! That is still beyond touching to me! (Love you Swanson family!) I also have other friends who purchased or built ramps they put out when I go to their homes. That means a lot to me!
How do you you shower because you always look so clean? This question made me laugh because of the added comment of looking clean. I am not sure if she knew other people in chairs who were dirty but I loved her question. Anyway, I have a bench in my bath tub that I use my arms to transfer onto. I need to have a handheld shower head so that water isn’t just hitting me in the face.
Why are you so lazy & always sit down? (Asked by my niece, Kenzie, when she was 4 years old.) It was a good opportunity to explain that I am, in fact, not lazy but am unable to walk. It went a bit above her head but I always try to explain in age appropriate terms what exactly paralysis is. Or if I am too tired to come up with an explanation, I just say that yes, I am just lazy and enjoy riding around. Recently while I was babysitting my 3 year old niece, Camryn, she tried to teach me how to walk by exaggerating her movements and when I could not do it, she became extremely frustrated with me. It was literally the cutest thing ever!
How do you know you can’t walk? Have you tried recently? That was asked by the one and only Leah, who is in my youth group, and honestly I didn’t have an answer for her. Truthfully I have not tried lately. I am just assuming I can’t since I cannot not move my legs. Hopefully I won’t get to Heaven to hear God say, you only needed to listen to Leah and try! LOL
Do you sleep in your wheelchair? Nope. While my chair can recline a bit, I do not sleep in my chair. Once again I use my arms to get into bed and use my arms to adjust my legs into a comfortable position. I have to wake up every few hours, sit up and change my position. My brain and spinal cord don’t communicate together so I had to train myself to wake up to change positions in order to prevent pressure sores.
How do you get dressed? I always get dressed in my wheelchair and wiggle my pants on. It takes me awhile to do it so I do not like to change my clothes unless I absolutely have to. If I could live in my pjs, I totally would! Getting shoes on is the worst because I cannot bend my feet to push them into the shoe. Sometimes I have to wrestle them on and sometimes I end up throwing the shoe across the room in frustration.
And last but not least… two of my favorite stories are not questions yet they are too cute not to share.
Zach was not quite 4 years old and we were outside with my sister-in-law and her kids. I was sitting at the top of my ramp in my manual chair, not paying much attention to the kids and chatting with Jen. Suddenly I felt myself unexpectedly rolling down the ramp, totally out of control as I hear my little son shout, “THERE SHE GOES!” Thankfully Jen jumped to the rescue and caught me before I tumbled out onto the ground. Twenty-three years later and this is a classic among our family stories that still makes us all laugh.
Finally, when my daughter, Morgan, was 3 years old, she told me she prayed for God to make me walk. I asked her what God said back. And as seriously as can be, she answered, “He said… maybe on Thursday!”
So I am still waiting but hoping someday Jesus calls me home on a Thursday so that her sweet prayer is answered!