I Wish I Knew Who Has It Worse
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There is no one who really gets it. I have not met anyone who has gone through what I have. My experience, my life, is unique.
Kaitlyn Mason, Cancer Survivor. Kaitlyn Mason, Jen’s, Arden’s and Evan’s best friend. Daughter of Jessie Johnson and Matt Mason, but being raised by her step-mother, Beth Clarke Sister to Ally Mason.
That is me. Kaitlyn Olivia Mason. This is my day; this is my life.
I wake up in the morning and I have to pull myself upright in my bed using the poles on my headboard. I throw off the covers and pull velcro straps, rrrip-rrrip-rrrip-rrrip, off my night splints that keep my ankles bent at an angle. I take them off and I sit down to undress to shower. I have to lean against the wall when I shower, because I cannot balance on my own. I have to pull my legs over the lip of the tub with my hands and hold onto a detachable bar on the wall, then hear the bang of my legs slamming against the tub.
I have to get dressed sitting on my bed. I cannot stand up and get dressed. I have to point my feet with my hands to get my pants on or else they will stay flat and I am scared I will break my ankles. I have to put my day orthotics on before my skinny jeans some days because they are too narrow and then I get self-conscious that people can see my orthotics.
I hate walking in front of mirrors because it reminds me that, even when I think I walk fine, my legs swing like crazy. I try to step as quietly as possible at 5 a.m., with my rubber-soled shoes and hard plastic braces. My steps sound like thud, thud, thud.
Having to ride the short bus in the mornings. Leaving 5-10 minutes early in class, depending on how far I have to walk. Breathing too heavily after walking just 10 feet. Too heavily for a 14-year-old girl.
My mothers tell me only I notice my walking and my legs. I say, “I know, I know.” But I know they are wrong. Who does not notice the girl with the clicking cane and the swinging legs?
And I ride home on a different short bus. And I stumble up the walk and I jerk my rolling backpack up the porch steps. I get home and I do my chores, my homework and when I am doing so I get distracted, then back on track, then distracted.
Some days I come home happy and laughing. Others, I come home sad or angry or confused. Some days I go straight up to bed after dinner and dishes.
My mornings, ADHD meds and muscle relaxant. My noon, muscle relaxant. My nights, muscle relaxant and vitamins. That is 6 pills a day. I know there are people who take more, but I do not know who. All that muscle relaxant and my legs still jump and jerk and spasm. The pinches and pricks and the itches all in my nerves. My left foot getting so cold I can feel it from 6 inches away and my right getting so hot it hurts, it itches on the inside, just in my nerves.
My nights, with the velcro ripping, rrrip-rrrip-rrrip-rrrip, and stretches. One leg straight up the wall, the other flat on the floor. Hold for 10 minutes then switch legs. Then exercises and 10 wall sits for 10 seconds each. 10 bridges for 10 seconds each. Get on your hands and knees, hold on leg up for 5 seconds. Do that 5 times for each leg.
Go up to your bed and put on your night splints and let your legs sweat and your ankles ache.
I know that someone has it worse, but I do not know who.