Meet Suzanne, a guest writer for this blog series.
“I didn’t know you were in a wheelchair now.”
This has become a fairly common sentence I hear, especially from people who haven’t seen me in a few years. And I’m never sure how to respond.
“Yeah, for a couple years now,” is what I’ve often said. But that is usually followed by an “Oh, I’m so sorry…” which is awkward, and I don’t know how to respond to that either. The last thing I want from anyone is pity.
It’s usually best for me to just change the subject, turning the focus on the other person: “What have YOU been up to lately?” or “Are you still working at the same job?” or “How is your family?”
For folks meeting me for the first time there is rarely any awkward conversation about the wheelchair. This is just part of who I am, they accept it, and we can talk about lots of other things. But for those who knew me before, when I could walk, albeit unsteadily with a cane, we sort of have to grieve together for a moment before we can move on. I think that’s why it was so hard for me at first to appear in public places in my wheelchair. I felt like I had to explain it.
My transition to a power wheelchair happened to coincide with the COVID years. No one saw me much during that time. I was working remotely, attending church virtually, and shopping online. We all were. And when we all emerged from our homes to actually see each other in person again we had all changed a bit, hadn’t we? Some folks went gray. Some folks gained weight or lost it. Children grew taller. I emerged with wheels.
CMT Journey
I was diagnosed with CMT1A back in 1981 as a teenager. My dad had been diagnosed, and because the disease is hereditary my sister and I were tested, and both of us have it. Back then I showed very few symptoms. I was a bit clumsy, and probably the slowest runner in my gym class. But it wasn’t until I was 30 that I needed ankle-foot orthotics, and I didn’t start using a cane until I was in my 40s.
In 2019 (and in my 50s), a neurologist suggested that I get a power chair or scooter. I cringed at that thought. I didn’t want to admit to myself that I was really at that point, so I stubbornly put it off and continued doing my PT exercises and struggling with just my cane. Inside my house I leaned one hand against the wall or the furniture or the kitchen counter for balance as well.
I did give in and buy a manual wheelchair for getting around places outside my home. But that wasn’t ideal. I had to rely on my husband or a friend to get the chair in and out of the car for me, or to push me if the terrain wasn’t easy. And if I went any distance at all my arms got tired of turning those wheels pretty quickly.
Then in 2020 I fell while getting out of a car and sprained my knee. My husband went to the drugstore the next day and bought a walker for me. I wasn’t happy about it. I stared at it, said it was ugly, and I cried. But I needed it. In order just to walk from my bed to the bathroom, to take the painful weight off my knee, I needed it.
As my knee healed I continued to use the walker, conceding that it really was easier to get around inside my house even when my knee no longer hurt. I was using the manual wheelchair more and more outside, even going for “walks” around the neighborhood pushed by my husband (wondering if all the neighbors were staring at us but desperate to get out of the house). I began realizing that having a power wheelchair would have some advantages: having my own control over steering the chair, relieving my husband from pushing me up hills, or even being able to go for a stroll through my yard by myself.
I will not deny that there was a learning curve to becoming adept in using the power chair along with a battle of emotions within my heart. But since I’ve given into it I have been able to wheel around my small town independently. Within “walking” distance of my house I can go to the library on my own, even get a latte at the coffee shop on Main Street by myself. I can roll through my own yard to see if my rose bush is about to bloom. I have even gone for walks in the woods with friends—there are several accessible, navigable trails in our area. And that is something I never thought I would be able to do again.
And then there was a phone call from an old acquaintance—someone I hadn’t spoken to in years. When I answered the phone the conversation went something like this: “Hi, Suzanne. It’s been so long since we’ve seen each other—COVID and all that. I drove by your house the other day and saw you outside and thought, ‘Oh, gosh, she’s in a wheelchair now.’” (Here we go.)
I had worked with this friend many years ago putting a show together at our local small-town theater. I knew she was still heading up events there, but it had been years since I had even entered the theater. Accessibility into the 1890s historic building was, honestly, daunting. The ramp was at the back of the building and the driveway to get to it was steep. With no place to park near the base of the ramp someone would have to drop me off and then go park somewhere else in town. But years ago, when I had stronger muscles in my legs, I had made it up the stone front steps of the building and even up a flight of stairs to the stage to perform with the contemporary Christian band that I was part of. Several times I had directed the Addison County Gospel Choir up on that stage, and I had held student piano recitals there, making use of their beautiful grand piano.
“I am calling because we are working on a new accessibility project for the theater,” she explained, “and I’d like to get your input.” Well, that was something new. I agreed to meet with her on my back porch the next day over coffee, and before I knew it I had signed on to be part of a small committee that would meet together weekly in City Hall to interview architects, hire a construction manager, review blueprints, and brainstorm strategies for fundraising. I was able to offer my firsthand knowledge of accessibility issues and speak into the design elements of a new elevator entrance. Additionally, I have been called upon to put my writing skills to work as we compose applications for grants to help fund the 1.6 million-dollar project.
Am I glad to be at the point in my CMT journey where I am using a power wheelchair? Emphatically, no. It’s really hard. Every day is challenging. But is God using it? Indeed.
Encouragement
And herein is the daily struggle: to keep my chin up and remain confident that God still has plans for me despite my weakening muscles. It is far too easy to start feeling sorry for myself or to focus on all the things I can’t do or what others may think of me. Some days I have to make myself count my blessings. Some days I have to pray out loud so that I can hear myself say it, thanking God for watching over me and for continuing to use me for His good purposes.
I am striving to live out these words from 2 Corinthians 12:10 (ESV): For the sake of Christ, then, I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong.
I recently ran into an old friend at a charity event where I was to receive a grant for the theater—someone I hadn’t seen in at least a decade. As my husband and I entered the room she was greeting people at the door.
She looked right at me and said, “Hello,” but didn’t recognize me until I said her name. There was an audible gasp. And then the dreaded response, “I didn’t know you were in a wheelchair now.”
“Yes,” I answered. “But it’s okay.”
Suzanne Rood is the author of A Limp of Faith, her own story of trusting Christ and living with CMT (Credo House Publishers, 2019). She serves as the Worship Leader at Panton Community Church in Vermont and directs the Addison County Gospel Choir. She also has 20 or more private piano students and loves to get on her hands and knees in her flower garden. Suzanne and her husband, Rich, have a son and a daughter, both married and living in the Chicago area with Rich & Suzanne's three beautiful grandchildren.
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