(This blog tells my family's story. To see the earlier bits, click "blog" at the top of this webpage.)
Beth’s physical therapist, Laraine, showed her how to shift her body to trigger a leg spasm that bent her knees, an invaluable skill for changing clothes in bed. Lying on her back with knees bent, Beth hugged her thighs up and over her body. Feet in the air, she put a pant leg over one foot to begin, the opposite of what most do (putting a foot into a pant). After the pants bunched at her knees, she pushed down on her thighs to straighten her legs. Then, rolling from side to side with effort, she pulled up the fabric a little at a time by hooking her left index finger (the one finger she could partly command) in a belt loop.
The first year after her injury, Beth let me take over for the final stretch, though she always tried (and failed) to budge the zipper and hook the button. She refused to consider clothing with alterations, with the exception of flip-flops, her preferred footwear. I added a piece of thin elastic around the back heel and sewed it to each of the side straps so they would stay on. Getting in and out of cars sometimes scraped and smudged her unprotected feet, a consequence she judged to be acceptable.
When her legs swelled, Beth used her new skill to deliberately trigger a leg spasm to stretch the muscles, move the blood, and reduce the risk of blood clots. She stayed active, and threw away the white compression stockings.
Therapy continued three times a week after school. We met a woman with the same level of injury who proudly showed us her straight fingers on the padded armrests of a power chair, the result of a long concerted effort with hand splints and stretching exercises. Beth asked her favorite therapist for advice about the splints for quads that were generally recommended.
As always, Laraine presented both sides of the issue.
The rigid splints extended from the fingers to the elbow and could interfere with sleep. Others slept fine with the splints and wore them religiously. Laraine explained that for quads, straight fingers could hinder the ability to grasp items well with the tenodesis reflex. That made it an easy decision for Beth. She discarded the splints and chose more function over form.
She owned wheelchair gloves but rarely used them, since she liked the ones with individual fingers that took a long time to put on. When meeting new people, she never hesitated to extend her calloused fist for a handshake, not worried about how her hands looked.
Beth’s confidence was growing; she had more at 14 than I had at 42, though I worried about doors being closed to her because of her disability. The first year after her injury, I thought it was inevitable that her attitude would crash and burn at some point.
I’m glad that I was wrong.
More years would pass before I realized that she had the world at her fingertips, even after her injury. From Beth’s point of view, every door was open.
A mom with a story