There Was a Time
“Do you think about CMT every day?” my husband asked me recently.
I paused for a moment, then shrugged my shoulders and said, “Yes.”
But there was a time.
There was a time when I didn’t think about it every day. When I was a teenager and had just been diagnosed, I didn’t have many symptoms yet, and I didn’t think about it that much. I ran down the road. I climbed trees. I could sit and play the piano for hours. And even as a young adult, when my husband and I were dating, we kicked our shoes off and ran barefoot in the grass.
There was a time when I walked out to my garden by myself to see if my beans had sprouted. There was a time when I sat on my back steps on a summer day and I didn’t worry about how I was going to get up.
There was a time when I went to the grocery store and walked across the parking lot without help. There was a time when I buttoned my blouse and tied my shoes without thinking that there was any challenge to it. There was a time when I could stand up out of my kitchen chair without focusing hard on where my feet were planted and at what angle my hands could push against the table and the back of the chair.
I can remember sitting in front of the television in the evenings while working on a counted cross-stitch sampler, and I never realized that someday I might not be able to hold a needle between my fingers. And I can remember the joy of playing the piano—sight-reading through the hymnal without even the slightest idea that one day I would no longer be able to reach more than a sixth between my thumb and pinky, or that on some days my pinky wouldn’t work at all.
But now, yes. I think about it every day. Because so many tasks require concentration. Showering. Dressing. Lifting the pitcher of orange juice out of the refrigerator. Carrying my breakfast plate to the table. Walking across a room and looking ahead to see what furniture I can grab if I need to catch my balance.
Which is why I think it is so important to remember how I used to be.
There is a house in my town that sits at the top of a hill on a corner lot. To the side of the house, a crop of maple trees and native undergrowth provide a lovely wooded barrier between the home and the side street. A few days ago, I was stopped at the stop sign there at the corner when I caught myself staring at that little wooded area. There was a trail that I had never noticed before—a little pathway that cut through the trees and up the hill to the house, obviously built by the resident there to provide a shortcut down to the road. There were steps made of logs here and there in the places where the pathway grew steep, and bordering the shady trail were various low-growing wildflowers—trillium and violets to entreat a hurried walker to pause for a brief moment to take in the beauty.
And I remembered.
When I was a sixth-grader living in the Seattle area, my parents built a path like that. Our house was on the slope of a wooded hill. The school bus would let me off down at the road, and I would cut through the trees, climbing up the steep pathway with my book bag swung over my shoulder. My mother had planted daffodils in a few open spots along the trail, which welcomed me home after a long school day. I can still recall the fragrance of the Douglas Firs that lined that pathway.
I need to remember. Because inside, I am still the same person I used to be. And remembering keeps that person alive inside me. I still love walking through wooded trails. I still love gardening and sitting on my back steps. I just need help now. I still love playing the piano. I just have to improvise now. And I need to keep doing those things as much as I can. Because there may come a day when I can’t.
But then there will come another day when I can. And I need to remember that, too. This morning I read this familiar passage in Romans 8:18, “I consider that our present sufferings are not worth comparing with the glory that will be revealed in us.” And then, a little further down, in verse 23, “Not only so, but we ourselves…groan inwardly as we wait eagerly for our adoption as sons, the redemption of our bodies.” I also cling to these words from Revelation 21:4, speaking of the new heaven and the new earth: “He will wipe every tear from their eyes. There will be no more death or mourning or crying or pain, for the old order of things has passed away.” And these verses in 1 Corinthians 15: 42-43 give me such hope: “So it will be with the resurrection of the dead. The body that is sown is perishable; it is raised imperishable; it is sown in dishonor; it is raised in glory; it is sown in weakness; it is raised in power…”
For those of us who have faith in the resurrection of Jesus Christ, the frustrations of this weakening, atrophying body is not the end of the story. I will be able to walk, and climb, and dance, and do intricate things with my hands once again. There will come a day.
Do I think about CMT every day? Yes.
But there will come a day when I won’t.
Suzanne Rood is the author of A LIMP OF FAITH (Credo House Publishers, 2019), her story of daily life with CMT, a hereditary neuropathy that challenges her walking, her music, and her faith. Here’s a link to purchase the book on Amazon.