I have noticed that as I have become less able to communicate, the more acceptable it is to assume my mental incapacity. Even though I reside in a prestigious nursing facility, I am falling victim to the notion that I am not reasonable or prone to fits of temper for "no reason at all". These prejudices, that is what they are, are harmful to the ALS patient. They leave us grievously wounded, susceptible to physical harms, like pneumonia, choking, death, etc; as well as mental harm, like grief, despair, depression, and death of the spirit.
Fed up. Sick of hearing, "I'm sorry." Apologies don't erase the pain you inflict on me. You pull my pubic hair. Your nitrile gloves pull the hair from my head. Not once in a while but day in and day out. You turn me in a manner that suits you rather than in a manner that doesn't stress my body. Why won't you use the pad and sheet to turn me as one unit? Instead, you allow my body to twist as you hold me one-handed. How good you are at your job. What part of "my muscles are dying" don't you understand?
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