My mother is an only child.  There are times I resent that fact.  I long for closer ties with those who share my dna if only to grant the opportunity of exchanging information about the affects of those shared strands running through us.  There are not many left in this fractured family of mine, but there is one from this extended branch I maintain contact with.  My great Uncle.  I wrote to him and posed the question with bated breath.  Did he know?  If he did know, would he remember?  He belongs on my grandfather’s side of the family tree not my grandmother’s but the families were close.  They lived in a different era.  They did not rely on facebook or email to keep in contact.  They did not meet people from half way across the world.  They simply grew up, married someone from the town they’d been in forever, and lived life together.  I prayed that this time, that small town mentality would serve my purposes.  Were they close enough that medical data would have been shared and remembered?  There was only one option.  I typed the words and hit send before I could logic my way out.

The question was simple.  Did he know if my grandmother had celiac?  It’s hereditary you see, and though my body gives me all the anecdotal evidence I need, the engineer part of me inherited from my father wanted evidence.  The more I have read these last few weeks, the more convinced I became that my grandmother suffered all those years simply because of gluten.  I watch my mother’s body heal and I see her come, slowly, to life again.  She is more alive than I have seen her since I was a small girl.  There is joy and sorrow in that knowledge.  There is a wistful wishing for things that might have been, but it is quickly over-ridden with the reality that at least we have a different tomorrow than we once faced.  I am so grateful for that, for this opportunity to see her live in the ways that I always wished she could.  I understood, all too well, the affects continual pain has on a body.  At least, I thought I understood until the pain dissipated and then I realized that I never really understood just how much that pain affected me in the first place.  It’s odd, to realize that something has to end before it can be comprehended.  My normal, was not so normal after all.

He wrote me back today, that great uncle I have only seen a handful of times in my entire life.  Those small town ties?  I am grateful for them today.    He confirmed, she had ileitis and sprue.  Celiacs full name is celiac sprue.  My heart breaks for the woman who suffered so many years.  The solution was so simple all along.  It was not found in the myriad of rusty orange tinted pill bottles covering the shelf in the kitchen.  Instead it was on the shelf above, in those donuts he fetched every Sunday and the loaf of bread he bought every few days.  It was in the pantry and the refrigerator.  It was in those biscuits they made each weekend and in that bread she ate each morning.  It was in those frozen dinners she came to rely on in her later years.  It would have been so much less devastating to give up gluten than to live with the affects of eating it.  Was it that science understood so much less then? Was it the lack of  prevalence of gluten free options I find on the shelves of the local grocery stores that made her refuse this change in diet?  I’ll never know the reasons she chose to change her diet and then go back again despite the healing her body experienced in those gluten free months.  Sometimes the concept of a time machine makes sense to me. This is one of those times.  I want to go back and tell her “Please, stop eating gluten so you can live.  If you do, you can be the mother and grandmother we all long for you to be.  You can get out of bed, out of that dark cold bedroom where you reside, you can live if you simply don’t eat gluten”.  There are moments I realize that despite all the growing up a little girl remains in me.  That little girl is desperate to shout at the top of my lungs “Live, please live . . . I needed you”.
I will continue down this journey she gave up.  I will live the life I wish she had decided was worth living.  I will stand in the aisle of the local farmer’s market store and converse with the strangers staring at the bags of gluten free flours.  I will absorb more information and I will learn how to live this new life.  I will fill my notebooks with recipes.  I will answer my nephews precious question as I stare at his outreached palm as he asks “Is this gum poison to you”.  I will tear up a bit when my big brother washes his hands before touching food he’s making for me, and then washes them again and again as he switches from his skillet to mine.  I will nod in appreciate when my big sister doesn’t find it strange that I am completely paranoid about cross-contamination. I will answer the questions as they come and I will spend many hours on google seeking out gluten free options.  I will spend more hours in my kitchen making meals that help me live pain free.

The battle is worth it.  I wish I could tell my grandmother that.

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