Monday, May 12, 2014

Until I Say Good-Bye

In my last post I wrote about the intimacy of sex and keeping that intimacy alive in CancerLand. I believe that staying sexual and sensual is important to keeping the lines of communication open. Yeah, many experts will say it’s the other way around but I have found that when the bodies keep touching erotically and when you are laughing together in bed, the rest of the conversations—good, bad and ugly-- will follow.

Today I’m reading about another kind of intimacy that couples face in serious illness. My mother-in-law Anne recommended this week’s book, published in 2013. The book is called “Until I Say Good-Bye—A Year of Living with Joy”. It was written by Susan Spencer-Wendel. Susan was an award-winning journalist at The Palm Beach Post until her diagnosis with ALS (Amyotrophic Lateral Sclerosis) also known as Lou Gehrig’s Disease—the incurable, always fatal degenerative disease.

Spencer-Wendel was in her early 40’s with three young children when she was diagnosed, and because of those children, she spent her last year writing about her life, her illness and them. The book details her travels with her children and the deliberate, memory-making adventures she planned with each one. One trip entailed taking her 14-year-old daughter to New York City bridal showroom so that she could see her daughter dressed as a bride.

Sweet stories, yes and poignant as can be, certainly but Spencer-Wendel also writes directly and graphically about what happened and what didn’t happen between her and her husband—how sex worked and how it didn’t and about the day she finally had to ask her husband to wipe her after a bowel movement.

Somehow we all know that “toileting” is a caregiver issue, but most of us imagine that as something that old people face and deal with. Maybe we think we won't care when were old or maybe they won’t care. I’m not sure why we think that, well maybe denial is why, but we do.

But here is a vibrant but slowly disabling woman who is still a journalist, mom, friend and partner and she can no longer manage the bathroom. It was awkward and uncomfortable and her husband gagged and held his breath, and they had words about it. And then she went back to her laptop and her writing.

That too is physical intimacy. Maybe tender and caring but maybe also embarrassing, smelly, sticky and difficult. That kind of head-on honesty is what I love about this book and what I admire about Susan Spencer-Wendell for documenting her year and its full-out joy. She is proof that it can be done.

The book is called “Until I Say Good-Bye”.

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