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Wednesday, September 14, 2011

Things Could Be Worse

Among the many things that stay with me now that my mother is gone is how, in her
cautioning voice, she would remind me that, “Let’s remember dear, Things Could Always Be Worse.” I found myself feeling that she was somehow minimizing what I was going through. However, before she went there, whatever the circumstance, disaster or strife, my mother would listen wholeheartedly and allow me to pour out my heart to her. That is a gift that is hard to come by. As a mother myself, I can now better understand the powerful impulse to want to fix every disappointment or challenge that stands as an obstacle to my child’s happiness. When a note from Mom or a call from home no longer suffice as the all-purpose palliative they once were, as mothers, we are left with few real words to ease their pain. There is faith, there is commiseration, and there is – as my mother found – the reminder that no matter the circumstance, someone else has it worse.
When my sister’s house burned to the ground, my sister called my mother who, naturally, reminded her that there was no loss of life. Yes, she lost her work on her master’s thesis when her computer melted down, her photographs and memories of a lifetime and her entire library, but her cat made it out alive. After all….wait for it…..it’s coming….
Things Could Always Be Worse.
My sister and I have often laughed at this panacea my mother offered. In fact, for years, we sought out birthday cards that included that exact sentiment.
Two years ago, I was in a small room that contained two chairs, side by side, and a medical exam table pushed up against one wall. I felt like I had waited a lifetime to find myself in this room, with a renowned geneticist who had made her mark studying Ehler’s-Danlos Syndrome. I brought reports from a rheumatologist, a cardiologist and my orthopaedic surgeon. I brought optimistic doubt that the diagnosis I had been handed previously would be correct. That would mean that the diagnosis my 18-year old daughter had received must be incorrect as well. I hadn’t polluted her gene pool.
Dr. Davis and I talked for about twenty minutes. She asked me many questions, things I had forgotten, stored and catalogued in the “to be forgotten” category. Were you clumsy as a child? Did you have frequent sublaxations of your joints, which ones, under what circumstance? Were either of your parents “double-jointed” in the same way you described yourself? Did you miss sports because of joint issues? Were you often ill in adolescence? Even as I answered these questions to the best of my ability, I had another dialogue running, “This is silly. She will say this was a false alarm. Better to put this to bed once and for all.” I actually had to stop her at one point, because I lost track of her thread of the dialogue.
“I was saying that I reviewed all you information and it is a pretty easy call to make that you do have Ehler’s-Danlos Syndrome, Type III. In fact, I wouldn’t be surprised if your grandfather’s early coronary event at age 43 was related to this disorder. As you probably know, there is no cure. There are pockets of research being done – here in NYC, at John’s Hopkins and out in Washington State. We are constantly collecting data and trying to understand how we can help patients. As you know, it can be painful and often, as joints age, the pain is exacerbated……”
Her voice seemed to fade away and all I could hear was a drumming in my ear. Was that my heart? I felt one tear slide out of the corner of my left eye, then one out of my right eye. Dr. Davis reached for a conveniently placed box of tissues. As I pulled one out, I apologized. The proximate positioning of the Kleenex reminded me of how much Bad News she must dole out in that small room. “I am so sorry, I know that there are people who have much worse genetic disorders, but it is hard to hear confirmation of what I feared.” …. (And now, here it comes, ladies and gentlemen) …..I said, “After all, Things Could Always Be Worse.”

There, I said it.
And do you know what she said? “Dawn, you are perfectly entitled to be upset and to be worried about your daughter’s welfare. This is bad news. Just allow yourself to sit with that for awhile before moving on to minimize what this means to you and to your family.”
Dr. Davis had just dispensed some very sound advice.
I am practicing the notion of allowing myself room, in the face of calamity, loss and disappointment, to be upset sometimes.
But the truth is, most of the time, all I can think is, “Things Could Always be Worse.”

Day 10

For information on Ehler's-Danlos Syndrome, go to www.ednf.org
A Seussical lyric from the Dr. Seuss Musical to make you laugh!

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