Ch.38. What was Supposed to Bring Pride Brings Shame Instead.
Pat belongs to the Stand in the Light memory choir, as explained in chapter 40. The choir is named after a song by that name which includes a line stating that standing in the light to be seen as you are is risky for anyone. There is also a line talking about dementia. I’m sure the choir director hopes people with dementia will rise to that challenge, letting people see themselves as they are as human beings with a medical condition rather than as anyone to be avoided or pitied. She probably also hopes that singing this song will help participants both accept themselves and feel some personal pride in their musical competence.
After practice Pat told me that song always brings her to tears. I thought that was good until she added: “It makes me feel so bad about myself. All I think about is what a failure I am in life and in all the things I can’t do anymore.” The song was triggering shame rather than pride.
The irony here is that Pat and I have written a book about shame entitled “Letting Go of Shame.” It was our first collaboration, back about 1979, and It’s still available through Hazelden Press. But it’s one thing to understand the concept of shame and another to be able to come to grips with it when you are afflicted with Lewy Body.
We wrote that shame has five main messages: I am not good; I am not good enough; I don’t belong; I am not loved or lovable; and I should not be. Probably “I am not good enough” is the most common message; “I should not be” is the most painful and dangerous one.
I’m guessing that Pat believes she is not good or good enough because of her losses, that she feels she doesn’t belong without her counseling career, and perhaps even that she should not be anymore. She says sometimes she feels useless. I think she still feels loved, though, given her strong family support.
There are five healing messages: I am good; I am good enough; I belong; I am loved and lovable; I am. “I am good” and “I am good enough” help people feel pride. However, I believe the last message, “I am,” is the strongest. I interpret “I am” as someone observing themselves without judgement. When I can simply declare that “I am” then I no longer need to prove to anyone, including myself, that I deserve to exist.
Pat is a wonderful woman, full of caring, wit and wisdom. She is good, good enough, held in our hearts, and loved. She is who she is, and that is more than enough.
Pat’s comments on What was Supposed to Bring Pride Brings Shame Instead.
I’m still struggling. Accomplishment was a large goal in my family. My brother never accomplished much and I was the accomplisher, the one who brought pride to the family, except my mother often shamed me in front of other people, so there was a two way pull. I still have very deep feelings of shame when I think about my past and some of my difficulties with my mom and some of the poor decisions I made. I want to be worthwhile, to always do the right thing, but often I can’t seem to. I’m trying to feel better about myself. Often I do but not always and sometimes I don’t feel good about myself at all. That’s a long time condition that I haven’t figured out how to make go away.
Ron’s love is often the only thing that calms me down and then I feel better.
I was diagnosed with Lewy Body with dementia. That means I can’t drive and I drove since age 16. I can’t even take the dogs out to find a place to walk them. Those are real losses to me that I am ashamed of not being able to go places with them where I can be peaceful. I have been told by my doctor that I could not drive and that I would never be able to. Driving is a skill I was very proud of and I’ve lost that pride.
I would say that when we sing the song in the choir about dementia, I used to cry all the time. Now I don’t always although when we had a partial concert this week with only those with memory loss singing and we sang “I want to be seen as I am” I did have a tear in my eye when my son Joshua was looking at me and I felt very strongly that he knew my tear was in my eye. Later when I checked with Joshua, he said he did know, and I felt very connected with him. He responded: “Mom, I love you and I’m very proud of you.” Singing that song was easier than it was any other time and I felt very understood.