Despite Alzheimer’s, Nobel Prize winner has grace

by mymothersbrain

Charles Kao Kuen, who was awarded the Nobel Prize for physics, has Alzheimer’s Dementia. I first read about it in an Alzheimer’s newsletter I receive via e-mail. And my first thought was that journalists must have found out about his illness and leaked the news. But no, after searching for stories about this I found that the Nobel Laureate and his wife were both quoted in several sources as saying that he has trouble speaking and may not be able to deliver a speech at the awards ceremony in December. Here are two links to stories about Mr. Kao’s achievement and his disease:

http://www.thestandard.com.hk/news_detail.asp?pp_cat=13&art_id=88970&sid=25646195&con_type=1

http://www.businesstimes.com.sg/sub/latest/story/0,4574,353744,00.html?

Besides the fact that I’m interested in learning all I can about Alzheimer’s and automatically gravitate to any headlines about it, this story piqued my interest because there is a certain grace in being able to say publicly that you have received the Alzheimer’s diagnosis. Like it or not, there are illnesses and conditions in our society that still carry a stigma. I think that Alzheimer’s is still one of these things. The best analogy I can think of is this one: As a survivor of sexual abuse, I recall a time in my life when it would have been far easier for me to tell someone that I’d been robbed at gunpoint than it would have been to tell them I was raped. Rightly or wrongly, the rape crime — even if you’re the victim — still carries a stigma. Same with my mother’s diagnosis.

If she’d been diagnosed with cancer, or a heart condition, or kidney disease, my reaction would have been different. There would certainly still have been pain and shock. But these are words that slip off my tongue more easily.  Yet when we first heard the dreaded words Alzheimer’s Dementia from a doctor, I could barely say them. Sure, part of it was denial; first rule of self-preservation and of those you love, right? If you deny it you don’t have to deal with it. You can pretend that everything is still OK.

But part of it was that I’d already seen what it had done to my mother-in-law, that it had turned her into a child who needed supervised trips to the bathroom and bibs when she sat at the dinner table. Alzheimer’s strikes fear in our hearts because nothing wipes out our very human essence like the loss of our mental faculties.  Think of the most basic things that we are taught from the moment we are able to begin to reason — the things that are so deeply ingrained in us that to be unable to do them humiliates and horrifies us: we are taught to use the toilet instead of our diapers; we are taught how to eat with utensils instead of our hands; we are taught how to tie our shoes and dress ourselves; we are taught to speak. There is a certain shame in not being able to do the things that young children can do for themselves. To lose these abilities renders us helpless, dependent on others. It forces us to give up control of our lives. So is it any wonder that Alzheimer’s carries a stigma that other illnesses don’t?

When my mother was still driving, the car she used to get around in belonged to my husband and me. We’d bought it when she needed a new vehicle and could not afford it. In the past couple of years, after it became clear to me that she could no longer drive, I sold the car to my brother-in-law. When I visited Mom in El Paso last month he loaned me the car. One day Mom asked me if this was the car she used to drive — the car I had taken from her. When I told her yes, she said, “I missed it a lot. I needed it go to the store.”

“But do you remember why you weren’t able to drive anymore?” I asked.

“Yes, because the doctor said I couldn’t. But that doctor was crazy.”

I left the conversation at that.

The thing is, I wasn’t able to make myself take the car away until I was able to acknowledge her condition out loud. At that, it took me about a year to say it and I had to learn to do it in stages. First I made myself begin saying, “My mother has dementia.” And once I got somewhat used to that, I had to learn to say, “My mother has Alzheimer’s.”

I still stumble over the word sometimes, feel it sit clumsily on my tongue when telling others about my mother’s Alzheimer’s. To read Dr. Kao’s acknowledgment about his own illness makes me feel less alone. And hopeful that one day, this word won’t have the power to cause as much fear and shame as it now does.

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