a familiar dynamic
(This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
After every swim practice, Beth leaned into a corner, put her hands up on the ledge, and raised her body up as far as she could — before being lifted out of the pool.
A familiar dynamic: complete assistance very (very) slowly becoming partial assistance, with her clear expectation that it would be no assistance in the future.
As a junior in high school, Beth managed to keep up with a full school day, swim practices, volunteering, and extensive homework. She typed lab reports and essays on a standard computer keyboard. The early version of DragonSpeak, voice recognition software, never was used. She didn’t use the typing aid I bought that strapped on her hand or the supports to rest her forearms on.
Beth used three fingers to type. She always relied the most on her left index, the only finger she could move a few inches, to press down on the keyboard. The useful left index also worked her laptop’s built-in mouse, set to respond to a soft touch. The same finger also hit letter keys on the left side and center.
The index and pointer on her right hand contracted in an arc and focused on the right side of the keyboard. To type with those two fingers, she had to move her right hand to place a fingertip on a specific key, since she couldn’t move those fingers. When a finger or hand spasmed, she used another and kept going. Her accuracy was amazing, but in high school, her typing (and handwriting) was significantly slower than her peers. Against my advice, she took the American College Test (ACT) with no accommodations.
Beth stubbornly refused extra time for assignments and tests.
Her application for a lift chair to use at the pool was approved. We met with senior students at the University of Toledo who took Beth’s measurements and discussed the design. The chair would have a standard seat with back support and a toggle switch powered by a motor with a rechargeable battery. Sitting on the seat, she would push or pull a toggle switch to lower or raise the seat.
The finished project impressively accomplished the task. At the YMCA, Beth stayed in her manual chair while I pulled the lift chair to a spot on the deck close to the water. She adjusted the seat bottom of the lift to a position slightly lower than the seat of her manual chair before moving onto the lift by herself. She used the toggle switch to move the seat down to almost floor level. From there, she used her arms to scoot to the deck and into the water without assistance.
Unfortunately, we could not store the chair at either pool. I could barely lift the heavy device to put it in and out of the car, so it found a home in our living room. Beth used the lift chair to get on and off the floor independently, sometimes stretching out to do her homework while a familiar movie played in the background. Austin Powers movies were comedy favorites. John made the girls laugh with lines from silly movies. Beth found humor in her disability that her friends and family shared. At school, a friend scolded her for not standing up during the Pledge of Allegiance.
When Beth’s friends gathered at our house, I loved to listen to their easy laughter.
Next week: more swimming serendipity...
4/5/2017 06:11:21 pm
Very nice post as well as well written. Enjoyed reading the post and hope to read more as time goes on.
4/6/2017 05:21:19 pm
Thank you, James. Welcome to our amazing journey!
4/5/2017 07:30:14 pm
So true about the laughter! As I read this I think about all the time and work that you both put into just living day to day and I shake my head to even consider complaining about anything.
4/6/2017 05:58:26 pm
Jill, I was a bystander for the hard work. Beth seemed to see everything through the lens of challenge and potential. With that lens, she expected time and effort from the start. It was a price she was willing to pay for independence.
4/6/2017 09:07:19 am
I'm so proud of you for sharing this story Cindy. Please let us know when the book is published!
4/6/2017 06:02:22 pm
Thanks, Paula! I'm working on the final revision of my memoir manuscript. It is a story I need to tell. I'll keep you posted!
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