External Genetistry

It was a common yet unproductive habit in the days, weeks and months following Lia’s diagnosis to do as any worried parent might do and question every external encounter or genetic mutation in our family history in pursuit of where had this come from. Often it wasn’t a very long thought, really more of a bothersome prelude to something more bothersome still than it was anything else, like waiting in line for a flu shot or the feeling you might get when inspecting a food’s nutritional label for what turns out to be no better understanding. Sometimes it appeared irately, a frantic obligation to safeguard everyone in the house, as it did last Winter when I almost convinced myself the diseased scoundrel was hiding amongst our flock of backyard chickens. If you let it you could spend countless, unfavorable hours glued to data of the electronic sort looking into plausible theories. In the end, finding an answer was as elusive (and contrary) as the century-old debate on emotion: do we run because we are afraid of bears or are we afraid of bears because we run.

It was wrong to be driven by emotion though; even when it was your own child and your own family at risk. There was nothing to guide us then other than what we knew and what had been made perfectly clear before we had even left the hospital to come home was that controlling the risks of type 1 diabetes rested soundly on the shoulders of the patient and their caregivers. There were some people who thought that because we’d been made aware of Lia’s diabetes and the symptoms of it had been treated the danger for her was over. Others mistook what she had for type 2 and their attitude leaned casually more toward pity. The most well-meaning but less informed of them all would question aloud were things getting better, and they were of course getting better, imminently speaking in terms of health and emotion. But better and cured are no more related than a book is to ignorance. What it really took, other than knowledge, was self-control and a willingness to reshape our reality to fit the new routines on which Lia’s livelihood now depended.

You could look into your own heart and listen to what it was saying to you only after her blood sugar had been taken and the insulin administered because it was then you felt the safest; you’d done what you needed to take care of her and so this was the best time to surrender to it with little worry of there arising any immediate problems. But you put yourself in jeopardy if you allowed yourself to stay in that one place too long. We were new to the whole operation and things could go wrong, sometimes quickly, so it was important not to forget that the requirement of any situation, good or bad, is not what you find in your hearts but how what is there turns to action.

And so it has been with brevity (and more than a little unrest) that I have over the past eleven months listened to my heart and considered the origin of Lia’s diabetes with no real hope of learning what it is and certainly without having any expectation of doing anything about it. What I uncovered was not a surprise: a family history (myself included) of an auto-immune disorder that has been linked to type 1 diabetes. This along with irrefutable proof that one other genetic mis-coding of mine — congenital anosmia, or the inability since birth to perceive smell — found its way into one of my other children suggests that nothing good would come of digging into this any further.

Or would it? Is there not danger too in following the path to discovery only to turn away in shame? Can anyone tell which grain of sand will cause the sand pile to collapse and which will not? Even rescuers learn something from a mudslide, if only to confirm firsthand that shit does in fact roll down hill.

To relate it in terms of our fear and the bear and the question so often posed, even by ourselves: The worry hasn’t diminished because things have gotten better, things have gotten better because of the worry.

That is the trouble with looking into the heart. Sometimes it works in your favor, sometimes it doesn’t. On some days it felt like nothing else mattered, but mostly there was so much more to think about.

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4 Responses to External Genetistry

  1. Sysy Morales December 5, 2010 at 1:04 pm #

    This was such a great post…I can see where you’re coming from…it’s a natural thing to do no? Although it’s painful I constantly search out what factors might increase the risks for type 1 (not what I come up with in my mind but what scientists write about in their medical journals). People call me crazy but if even a few future cases can be averted by some small information, I think the sadness I feel along the way is worthwhile. What do you think?

  2. Jules November 16, 2010 at 3:42 pm #

    Oh, I remember feeling the same. Wanting an explanation and to find the source. I still do a little bit but am also just too busy living and loving and laughing to need it so much now. I am also busy wondering where this attitude of a teenager in my four year old has come from! Ho hum.

  3. Shannon November 12, 2010 at 2:21 pm #

    Heavy post, Steve. When my daughter was diagnosed, I asked my father, “Do you think it’s from when she was exposed to the shingles last year? Or maybe…” And he stopped me and basically said, “That way lies madness”. He reminded me that when my mom was diagnosed with cancer, she spent so much of her time trying to figure out the whys.

    I still have moments where I wonder if I am to blame but luckily they are few and far between. Thank you, as always, for sharing your thoughts.

  4. Reyna Maher November 12, 2010 at 12:46 pm #

    Steve, well written…and this took me back a bit. I remember having the same feelings/thoughts when Joe was diagnosed…wondering where the autoimmunity deficiency originated from. Quickly, I realized…after my sister was diagnosed with Celiac and Hypothyroidism that “my” side of the family was the guilty party. Nothing good could come from the blame. I acknowledged it and moved on.

    Great post!

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