A couple of weeks ago, I interviewed Deb Weuthrich, former Herald staffer. In March, she published a book about her daughter, Michele, who died at the age of 11 from Spinal Muscular Atrophy. The book, “Dance While the Music Still Plays,” is a moving and spiritual account of Michele’s life and death and her impact not only on Deb’s life but countless others, too. Deb will be doing a book signing May 10 at the Tecumseh District Library from 2-4 p.m.
Reading Weuthrich’s book got me thinking about my sister, Carol, who died Dec. 19, 2002. Carol suffered from Friedreich’s ataxia, a degenerative neuromuscular disease similar to ALS and Muscular Dystrophy. She also had congestive heart failure.
Some two decades ago, not long after her 42nd birthday, I was sitting with her in the U-M hospital emergency room, after convincing her she needed to go there. Maybe for both of us, the hospital was the place where you go when you are sick and they make you better. Whenever she went there, they made her feel better, but as her disease progressed, feeling better was replaced by feeling sicker.
My sister had been dying for a long time.
That Friday night, Carol was lying on a bed, hooked up to the latest and greatest technological monitoring equipment of the day, and a first-year medical resident was asking me questions about the medicines she was taking and her overall physical state.
I remember she told the doctor that she felt “fine.” I don’t know how she could feel fine. She was so swollen with fluid that it was leaking through her skin—they call this condition “weeping.” She couldn’t feel it, though, because she didn’t have a lot of feeling below her shoulders and chest. She would doze off for a few seconds, then wake up, looking around for me. I was standing there, holding her hand. I remember thinking that night of a photo my father took of the two of us in the early 1960s.
I was 4 and she was 2. It was early summer and we were sitting in the backyard of our house at 604 Cairns Street. My father had a keen interest in photography and took hundreds of photos on his Argus camera, a model made in Ann Arbor. He used Ektachrome film and had everything made into slides, which we then would view on his big, green Bell slide projector.
In this picture, I am wearing a blue dress, and my sister Carol, a pink one. We are barefoot, sitting in the grass, our heads bent over something. I imagine now that I am telling her something about a flower or pointing to a bug. But I don’t remember.
My relationship with my sister was complicated, especially in the last few years of her life, as her health and physical ability declined. I have little “emotional memory” of my childhood with her–her diagnosis and subsequent physical problems overshadowed our relationship.
I know I always loved her, but I don’t remember how much fun we once had or how excited I was to have a baby sister or what games we played. Most of my memories are of rushing to her apartment in Ypsilanti or her rental house in West Ann Arbor because she had an emergency. Or of Christmas days when I would pick her up, load her wheelchair into the trunk, and drive her to my mother’s house accompanied by her twin daughters. Or getting her in and out of the shower and dressed. Or on and off the toilet. Or, on that day in the hospital, holding her hand, trying to be a source of comfort.
Faith tells me there is a purpose for us all, but it’s hard to understand sometimes why Carol suffered so and had such a short life compared to the rest of my siblings. I still wonder how she felt about all of it. She was a positive, upbeat, person who never let her disabilities stand in her way. She had a strong faith, too.
That November night, as she lay there, her skin damp, waiting to feel better, I held on to that puffy, cold hand and told her that I loved her.
She smiled back at me because she had known it all along.
SQUIBS 