I took an active role with directing my care within months of my injury. I spent 12 of the first 15 months inpatient at Mary Free Bed Rehabilitation Hospital. Everyone from my speech therapist to my OT hammered this in my head. Unfortunately, too many people with SCI’s fall into a passive mode regarding their care.
I’ve had hundreds of people assisting in my care and, Lord willing, will have hundreds more. I direct everything from how I like my room, how to shower me, to how to put my braces on. And I have a ton of braces. Two pairs for my ankles. Three pairs for my wrists and hands. One for each elbow. I need a mule to pack my braces up for every trip to the hospital.
With directing in my care, my patience has grown exponentially. Particularly when coaching people over how to put the braces on. Some people pick up on my instructions quickly. Most need a fair amount of coaching once or twice before they start to get it. And there are some who seem to have a little common sense and are totally baffled despite repeated instructions. These are the times I want to start screaming, especially if I’m tired or in pain. But I stuff that urge and continue coaching or suggest somebody else show them how to do it.
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