Happy You, Sad Me | Lewy Body Dementia Association LBDA

Happy You, Sad Me

by Ginnie Horst Burkholder

The jokes were stupid, the games were silly, and much of what everyone else was doing seemed pointless. Laughter always created what seemed like a psychic chasm between me and others.

“Psychic yardage” is what Mary Karr (in her memoir The Liars’ Club) calls the emotional distance between her sister and herself when they respond with opposite emotions to the same event. This phrase struck a familiar chord with me. During the first five to ten years of Nelson’s disease, I was in so much emotional pain I couldn’t laugh or even comprehend other people’s laughter. The bottom had fallen out of my safe secure world, and I was in free fall. The jokes were stupid, the games were silly, and much of what everyone else was doing seemed pointless. Laughter always created what seemed like a psychic chasm between me and others.

Thankfully, I survived that free fall and have come through it stronger and much more aware of the color my own perceptions put on life. I’ve learned to accept sadness along with happiness, fear along with love, and pain along with contentment as part of life. Long-term spousal caregiving gives abundant opportunity to learn from grief and its entourage of emotions and to learn how to deal with psychic yardage.

As I have observed each new Lewy body loss of function, each new loss of potential for connection between Nelson and me, each new loss of support from him, and each new loss of normalcy, I have tallied up lessons about grief and psychic yardage. I’ve learned that people can’t really understand what they haven’t experienced. It’s not fair for me to expect them to. I’ve learned that given the opportunity, people will often empathize, but that requires my willingness to be vulnerable. I’ve learned that there are things I can do to minimize the psychic yardage.

I find myself feeling the emotional distance in social situations when conversations turn to “normal” but laughable spousal interactions. She talks about his silly habit, he tells a tale on her, or they enter playful sparring over incidentals – intimacies that are no longer available to me. Then it’s a reminder of loss, and my feelings can quickly turn to sadness and psychic yardage. Laughing you, sad me. Or if I do things with family or coupled friends, it only takes a simple exchange of consideration or affection between spouses for the inconvenient and inevitable truth of my loss to blossom into sadness.

I once listened to a speaker talk about adult relationships to an adult audience. He addressed both those who were single and those who were married. I sat there and wondered where I fit. Not with the couples. Not with the singles. Most of what he said was simply not applicable to my relationship with Nelson. When I went up to him afterwards and wondered where I fit in this world, he was understandably puzzled.

I told him briefly my story: I’ve been living with a spouse who has dementia for over a decade. He immediately became sympathetic and understood what I wanted him to – that spousal caregivers have a unique and rarely addressed dilemma. We don’t fit. We aren’t seen. We have psychic yardage.

Sometimes when I find myself skidding into grief-producing psychic yardage, I remove myself. I don’t need to stay in a room full of couples talking about their coupled travels to distant parts of the world, or their grand wedding anniversary.

Other times letting someone in on my private grief builds understanding. I’ve cultivated relationships with persons who understand and welcome the healing power of grieving and mourning so that vulnerability on both sides is part of the relationship. This, more than anything else, has kept me from the misery of alienation that threatens with chronic psychic yardage.

As spousal caregivers we live with ongoing loss at the same time we live in a coupled world that promotes and pursues pleasure and happiness – as if achieving them is a matter of survival. We have to find ways to promote understanding when we can’t participate in the party. We have to live our grief authentically so that we will come through the pain stronger and be able to join an occasional party without being a drag on it.

The truth about life for all of us is that it holds both joy and sadness. Holding on to them both loosely keeps me sane in the precarious world of spousal caregiving. And more often, as I learn life’s lessons, I find a precious moment where there is no psychic yardage at all, where the two of us have come together, and for now we are both happy.

© 2010 Ginnie Horst Burkholder

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