If I lost a limb (through an accident, or disease) I know even as it was being removed professionals would begin to marshal their skills to support and enable me to compensate for the lost limb. I would probably be fitted with an artificial one. Perhaps technology would be added to make the limb more functional for me. There would be therapy sessions to help me learn to use the new limb. The goal would be to restore my lost functions, to enable me to be fully functional.
Family and Friends would still see me as Richard, only I would be Richard who just lost his arm or leg. Even though most all would know I was not a “whole” person in the sense I was before I lost my limb, no one would ever think of me or treat me any different than they did before I lost the limb. After all I was “still Richard.”
I have a cognitive disease. I have already lost some, and I continue to progressively lose more and more of the functional uses of my brain. I know I can’t be fitted with a new brain. I know technology can help me compensate for my lost functions. I know therapy has and will help me learn to continue to use my diseased brain to meet my personal needs, to support my attempts to continue to evolve and grow as a human being and to live a full and complete life. I will need help from others to enable me to function at a higher level of competence than I can or will on my own.
Why do professionals and others focus on my lost functions? Most every time I visit a physician why is I asked “In what county do you live? Who is the President of the United States? Repeat to me the same three words I told you five minutes ago.”? They already know I don’t know the correct answers to these questions. Why do they keep asking?
Why to family and friends see me as half full, 45% full, 43.7% full? Full of what? Empty of what? Why do they refer to their care giving experience with me as “the long good-bye?”
“Hello, I’m still here!”
Losing some cognitive abilities (I’m a poorer organizer, driver, check writer than I was); losing some interpersonal skills (I’m more than a tad more verbally aggressive at times, than I was previous to the disease. I sometimes misunderstand what people mean); and losing some of my ability to remember (I forget. I forget what I forget) is, in my mind similar at least in some ways to losing a limb. There are devices and strategies that can help me compensate for the loss of the functions the missing limb performed prior to my losing it. I can learn how to compensate for the deficits.
The loss of the functions has however not changed me as a human being. I am still me! Perhaps not the me you knew prior to the appearance of my disease, but I am at the very least still “a” me every day of my life. And if you will take the time I hope you will discover I am today still mostly the me you thought you knew yesterday.
