Struggle and Hope | Lewy Body Dementia Association LBDA

Struggle and Hope

by Ginnie Horst Burkholder

I keep trying to hang on to the goodness in life – keep trying to focus on the hope. Still, it seems I’m on a leash that will let me go only so far toward equanimity before I am jerked back to my reality and the grief of struggle.

When I can focus away from Lewy Body and its consequences on our lives, I get absorbed in the good I am able to create. In those times I can laugh at Lewy Body absurdities – the undershirt he is trying to pull on as shorts, the nonsensical word salads that come out of his mouth. I enjoy life in spite of the disease.

Then something happens. I am tired, task-oriented, or just want a relaxed relationship and comfort. Then suddenly I am back to a familiar and unwelcome place where the yoke of a Lewy Body marriage pulls me down into a cesspool of grieving.

I am in a partnership with someone who cannot pull his weight. I arrange and manage life for two people. Lewy Body has taken away our equilibrium. He counts on me to organize and schedule our agenda for him, barely aware that if my ability goes away, we will surely both be in a heap of trouble.

Meanwhile I live my life in a sort of limbo, a no man’s land – neither a single person nor feeling the relational benefits of a marriage. Must I just be strong and live out all the pretty “shoulds” without contention?

I “should” be strong and committed to the relationship with my husband of forty years, and that relationship “should” sustain me. I require myself to surrender to my commitment, but how long can I swallow my loneliness?

I “should” be able to focus on the good in my life. When I am focused on friendships, family support, and new experiences, I am energized. Then, in my joy and enthusiasm, I turn around to share it, but the excitement falls on barely comprehending ears and elicits muddy Lewy Body questions with long pauses that drain away my desire to engage. Then I am jerked back to struggling against the losses.

I “should” shift my focus to people and places other than myself and my circumstances. So I push my comfort zone and surrender to going places that will give me new experiences. There I meet new people and am teased with new relationships that look more satisfying than the one I am committed to at home. Then I am brought again full force into grief.

For thirteen years we have been a partnership: Nelson, Lewy Body and me. It has been a struggle that seems to require frequently revisiting a realization described by Joan D. Chittister in “Scarred by Struggle, Transformed by Hope.”

“There is no one, I come to realize with a kind of empty shock, on whom I can depend to do my bidding this time. Despite the network of people I have carefully constructed over the years, there is no one with connections enough to pull this final string for me. There is no one on earth, no matter how well-disposed they may be to me, who can make the inevitable go away. It is like losing at the Supreme Court of life.”

I may lose at the Supreme Court of Life, but I will not lose even more by abandoning the potential for greater acceptance and hope.

Yesterday, February 14, Nelson sang a valentine song to me that he learned in kindergarten. “Valentine, Valentine, tell me what you say. I love you, I love you, more and more each day.”

I just couldn’t resist saying, “So you saved it all these years to sing it to me standing naked in the bathroom door.” We shared a laugh and a hug.

© 2008 Ginnie Horst Burkholder

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