When my beloved friend Sandy* got the stunning news that she has “stage one dementia” I had no words. A hug seemed like the only possible response. All I could do was listen.
A former religious worker, Sandy has spent her life giving it away. She taught campesinos in Latin America, sheltered the homeless in Catholic Worker houses in the U.S. and, until a month ago, interpreted for immigrants who needed help, all without payment.
Holocaust survivor Victor Frankl said we can bear almost any “how” if we can find a “why.” From the pain of childbirth to the wounds of war, people voluntarily suffer for a cause. But how do we find meaning in suffering imposed on us, something as cruel as dementia? Sandy’s answers are tentative and come from from a life of faith. They would not be everyone’s answers. I want to share them nonetheless.
She sees her memories and skills being stripped. “We come into this world as little children,” she says. “Maybe I’m being prepared to leave as I came.” Again, “I’ve always known how to give. Maybe I’m to learn the humility of having to receive.” On another day, “At least I can be a cheerful presence with other old people.”
These are not superficial, Pollyanna-type comments. I get a feeling Sandy is locked in a spiritual struggle with despair. She sees what’s coming with clear eyes. She says, “I always valued my autonomy, but now I realize I have to let others make my decisions.” “If there comes a time when I have no words,” she says, “ I’ll try to make my life a prayer.”
Sandy sees my tears and seeks to console me. She takes comfort in a scripture which she writes out for me: “God has not given us a spirit of fear but of power and of love and of a sound mind.” I understand how this helps her with fear and loss of control but wonder what “a sound mind” can mean to Sandy in these circumstances. Then I remember that Thomas Merton said each of us is always a beginner in the spiritual life. Maybe a sound mind is a beginner’s mind. If so I need to cultivate more of it.
Just before Sandy left with her sister, I discovered a poem by Wendell Berry, “The Real Work” (Collected Poems). The whole poem is lovely, but I focused on this line: “The mind that is not baffled is not employed./ The impeded stream is one that sings.”
We welcome your stories and comments.
Carolyn Miller Parr
[*Sandy’s name is fictional. Everything else is true.] ©Beyond Dispute Associates, 2011.