How We Love

by Ginnie Horst Burkholder

Nelson and I went to a wedding eight years into the Lewy body diagnosis. By this time the support systems were in place, and we had dealt with many of the logistics of living with this disease. For me, however, the emotional adaptation was a constant roller coaster. After the wedding, I sifted through the aftermath of feelings by journaling.

Something tight and sad just reaches inside and wraps itself around me at weddings. It’s the fairy tale that should have been, the bright promising future that could have been, the hope and the promise that went away. A pastor’s story about the changes in life that took a couple back to the wedding vows with a different perspective each year only sharpened my sadness. I am acutely aware that for Nelson, that potential is slipping away with each year of Lewy body.

How do you embrace love that is so ghastly needy? How do you let go of wanting to receive just a little normalcy? I decide I hate weddings. While others might be seeing hope and anticipating the future, I am seeing disappointment and burying the future. My sister sees my struggle during the ceremony, and reaches past Nelson to touch my arm, and the comforting gesture makes the tears harder to control. I sit there biting down on the sadness, my eyes wet, my nose running. They say their vows, and Nelson reaches his hand toward me, prodding. I turn questioning eyes, and he pulls my hand into his and holds it. He loves me so much and yet can’t be what I want or give what I need, which, at the moment, is tissues and comfort. When will I ever learn to carry tissues to weddings and funerals?

When they introduce the bride and groom and then tell them to kiss, Nelson turns toward me. I think he has a question, and I bend toward him. He kisses me on the cheek. I am deeply touched, and feel love and lost to love — at the same time knowing and feeling it impossible to have.

What is it? I am not sure. I know what commitment is. We have that. But love? It seems like this impossible dream that teases me and I forever believe it is possible, but just when I think maybe I have it, it seems to evaporate because love is supposed to be a two-way giving, a two-way sharing, a two-way managing, a two-way effort, and it all feels so one-way; and I do not yet know how to love when so many suppose-to-be’s have gone away with no hope of returning, and I am left holding all the responsibility with absolutely no room for letting you cover my back, but always and forever, I need to cover yours.

This week we celebrated forty years of marriage. Our anniversary open house was a great time. There were glitches, like the coffee on the shirt at the last minute. What shirt now? Can’t be this one, or we have to change pants too, in order to match. This isn’t as nice, but it will have to do. It doesn’t matter as much as it once would have. We are getting used to these things. We no longer have the energy to fight them. They are only speed bumps.

He wanted to buy a card for me. I needed to get him one too. We went to the drug store. Then, helping him find the appropriate card to choose, I wondered why on earth I hadn’t brought along one of the family, sitting back at the house, to cover this. I forgive us both, him for having the disease, myself for not being able to think of everything. Later we exchange the cards in a private moment and then are swept up in the momentum of the open house. There were pictures. There were goodies. We greeted, we mingled, we remembered, and we laughed.

When it was over, family members began cleaning the hall. I had invited friends from long ago to return to the house to reminisce. Nelson chose to stay at the hall and help with cleaning. We no longer need the stick-tight Velcro love of years ago. Time and Lewy body have fostered another look at love. Maybe love is not defined by what the other can give to you, but by who they allow you to be. I allow for his disease, his forgetfulness, and even his denial. He allows for my bungling, emotional, sometimes impatient caregiving. For now this is how we love.

© Ginnie Horst Burkholder

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