We all get labeled in life.
But what happens when a doctor hangs the label of MCI on you? Is that who you become?
Today I offer you the inspiring story of Mary Lee, a delightful woman who has learned to wear the label of MCI more lightly, and wants to help soften that label for you, too.
I enjoyed conversation with Mary Lee, and she had many observations — more than I could fit into this video without turning it into a full-run movie.
If you’d like to go deeper into what she had to say, I invite you to read this fuller transcript of our conversation, which includes compelling passages that didn’t make it into the video.
This extended version of the transcript begins below:
I’m wearing a label today. We all get labeled. Mine says “white male,” and that’s accurate.
Now because I’m a journalist, here’s another label I wear. (Sign says “Liberal Media Rag”) And though it doesn’t feel fair to me, I hear it pretty much every day, and I’ve come to expect it.
But enough about me. Today what I want to talk about is a label that would be more relevant to you. This one. (Sign says MCI) What happens when a doctor hangs the label of MCI on you? Is that the person you become?
I’ve been thinking about that a lot since I met Mary Lee, a delightful woman who I’ve come to know through my work. She has some really interesting thoughts about labels, especially around illness, and the importance of softening those label, and that’s what I want to talk about today.
Hi, I’m Tony Dearing, of GoCogno.com, the website for people with mild cognitive impairment.
Mary Lee is 82 and lives in a tiny Midwestern town where she belongs to a Benedictine religious community. She was tested for dementia about a year ago because of a required test for car insurance which revealed a possibility of Mild Neurocognitive Impairment. Here’s how she describes her reaction to the news:
“I was terrified. I can’t tell you how alone I felt and then I thought I don’t even know what a thing about this. What is it? No one in my community could give me any answers. So I began to google and did my own research where I happened to discover GoCogno and found much comforting information on both the videos and the interchanges I had with you Tony. ”
She often has posted comments on the videos, but she posted a comment recently that I just couldn’t get out of my mind. It had to do with illness and labels and the death of her mother.
In part she wrote: “I am wondering about labels that are a name for which we have been diagnosed. Do labels confine us to a make believe life?” and do they have the power to define us”?
She wrote that her mother was 70 and quite ill, and when her mother learned she had an incurable condition called aplastic anemia. She seemed to lose hope of even trying to make the most of it since little encouragement of a life that offered options of making the most of the time she had left was not given to her by her physicians at Mayo Clinic. “During the 1970’s physicians seemed to be Gods who were beyond being questioned. I believe my mother heard only ‘now you have been diagnosed as hopeless and there is nothing we can do’ and she believed it.” She went on to say, “I remember the shock on her face which devastated us, her family. As a result of remembering that painful time, I really hope to listen to others and….soften the label that they often believe is who they are”.
The idea of softening the label of MCI intrigued me, and I really wanted to know if Mary Lee had been able to do that for herself. She was kind enough to chat with me about that and she admitted that at first, yes, that label consumed her.
“When I found that out, I didn’t know anything about it and the label was very harsh to have without a softening or a spark of hope that it’s bigger than just that label such as cancer. And I felt at that time that MCI was more of who I was than who I knew myself to be. I really wondered if maybe I really did not know myself because of the possible diagnosis I had been given. I knew nothing of MCI and that this particular ailment was not as harsh as it seemed and that there was a possibility of it even being reversed which was explained to me later. In a sense before this time, I was feeling a shift from the WHO of me to the WHAT, meaning a very different person from others, not as good as since I had flunked a test which brought back past childhood memories of failing tests . I had thoughts of MCI leaving me very dependent on others who may eventually become impatient with my condition.”
But over time, Mary Lee found that spark of hope, and the grip this label had over me begin to lighten. She began to see the statistics that most people with MCI do not progress to dementia and that It’s possible to slow or stabilize cognitive decline or in some cases, even reverse it. And how healthy life choices support this — among these being exercising, following the foods dieticians recommend, engaging in social interchange, meditation and prayer.
In fact the morning I talked to Mary Lee, she had just come back from her exercise class at the YMCA.
“And it’s a wonderful class, Tony. We have this one young guy that just really drives us, but who really cares about us. I have told these young people who lead the classes to please turn down the music volume so they don’t have to yell so loud but Abe says “Oh I don’t mind” then I told him he sounds like a sergeant and I am worried about you and your losing your voice. I used to dread those what I used to call boot camp training classes but I have grown to love the class, those in it and Abe. We really miss one another when we are not there and pray for one another when we are sick.”
Just listening to Mary Lee, it is evident to me that she is not defined by what she may have but more by who she is, a determined woman who has experienced the power of labels in her life and desires to soften the impact of them for others by giving each one hope such as what she said I have done for her which she describes as my being a lighthouse, Directing the light not on the WHAT (the diagnosis) but more on the WHO, the person inside the diagnosis treating each person with respect and as person not as an illness, continuing to keep updated on recent MCI research and sharing the good news through videos. In her words “turning the light on all that encourages independence and a meaningful life one of giving Hop instead of one that gives up and gives into hopelessness” and she quotes from the Old Testament too “I put before you life or death, choose life.” (Deuteronomy)
And that’s what she wishes for anyone who is living with this condition I asked her, what would she tell someone who has just been diagnosed . She said:
“Well, it would be important to ask the person first if she or he would like to talk about it or share their feelings. If either needed encouragement I would tell them that a diagnosis is not who you are, it is what you have been given — much bigger than just that label. It’s much bigger than that because everyone is an individual, meaning very uniquely and differently created. So one size does not necessarily fit all. Because of this there’s a whole lot more that we do not know but also there’s a lot we do know about it, so hope springs eternal within this realm. I would share what research has found to be of help in reversing this or maintaining what abilities they have. I as well know that a healthy lifestyle as is suggested by the researchers would be the same for everyone who desires a life that provides optimum energy and a positive attitude which for me nurtures enjoyable social interchanges such visits with one or two people over a cup of coffee, meditation with a glass of wine, openness to new changes in life and listening to the stories others have to share, Listening with the ear of your heart as our founder ST. Benedict invites us to do. I would definitely tell each person if they are Christian, Remember, the love of God is more powerful than any of us.”
Wise words indeed. That’s why I wanted to share these thoughts with you and I hope you find them comforting. Thanks for joining me today. I’ll see you next week. Until then, as always, be kind to your mind.