Like every other profession in the world, there are inside jokes in medicine. Random friends and acquaintances send photos or comic strips characterizing nurses as battle-axes waving syringes or doctors ignoring the patient, calculating their golf game. In other cartoons, women are caricatured over time by the degree their breasts sag.

Today, I received this from a friend:

And while it made me laugh, I started thinking about the implications and, as is typical, my thoughts drifted to Duchenne. How many women talk about feeling ‘less attractive’ after the diagnosis – the guilt they carry, somehow manifesting itself on the outside?

 

And then I wondered if, with the diagnosis of Duchenne (or any other catastrophic illness), intimacy slips away, the little, meaningful kisses for our husband or partner, the looks, the touches. Is that intimacy lost or ignored behind a wall of sorrow?

 

My mother is in a nursing home. She is 95. I visit her often when I’m not traveling. The visit follows a predictable pattern. I find her sitting in her chair, her feet on a recliner. I lift her feet and put them on my lap and put her hands in mine, as I have learned this touch grounds her and me as well. At 95, short term memory has diminished. She asks about her brothers and sisters and counts them on her fingers. Norb Frank, Carl, Rose, Dot, Camille, and me. She asks if they are still alive. No, I say. You have lived the longer than all of them. She asks me to tell her a memory. I talk about dinners long ago, me sitting to her right.  We talk about homemade bread, apple dumplings, goetta, apfelmus (German applesauce). She asks about Jenny and Michelle, if they still live at home. No, I say, they are off living their lives: Jenny in New York with her husband, Kris, and Michelle living in London. She asks if Jenny or Michelle is still in school. I explain Jenny is taking classes in library science at NYU. She talks about when she was young, how the nuns would say ‘you are nothing like your sisters,’ and her interpretation that she was not as smart or talented as her sisters. That message, sunk deep in her cerebral cortex, has lasted for over 90 years. She asks me if I remember how she used to tell me to enjoy every day, that there are no ‘do overs.’ I smile and say, Yes. She often puts her head back, closes her eyes and says, ‘It goes so fast, Pat. Life has both joy and pain, sometimes more one than the other‘ remembering her own life and losses. By that time she is spent. I lift her hands and place them gently in her lap and start to leave. She ends with ‘that’s what I miss most…. being touched, being held onto.’

 

I saw a recent interview with Kelsey Grammar. I’m not necessarily a fan of his, but he was explaining the disaster of leaving his wife and marrying another woman. He said he made a mess of things. And he talked about his decision and recalled the moment he decided to leave his wife. He was on a Ferris wheel with the woman he is now married to.  He looked at her and she kissed him and he realized, he had not been kissed, really kissed in so many years, he hardly remembered what it felt like.

 

I started to wonder that catastrophic events, the diagnosis of Duchenne and perhaps other major bumps in the journey, bring about a loss of intimacy, a loss of our sense of beauty, a loss of joy, and maybe for some of us or for all of us at times, the loss of the ability to touch, to hold, to kiss those we love because we lose our sense of self.

 

I hope you’ll take a minute and share how this diagnosis has affected intimacy in your life.

 

And a reminder: As part of the Parent Project Muscular Dystrophy’s Women’s project, we are happy to announce the launch of the mothers’ survey. This survey collects information from mothers of children with Duchenne and Becker: your needs, your strengths, and your wellbeing. The results from this survey will help us develop new interventions to improve mothers’ wellbeing. We’ll continue with mothers’ surveys for 5 years so we know more about how mothers’ wellbeing changes over time. Go to ParentProjectMD.org/MotherStudy to learn more, or email Holly Peay at holly@ParentProjectMD.org or call 443-791-5927 to ask questions or join the study.

 



Pat Furlong, Founding President, CEO
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