Tuesday, October 1, 2013

The Art of Losing

The art of losing isn't hard to master;
so many things seem filled with the intent
to be lost that their loss is no disaster.
---Elizabeth Bishop, "One Art"

Friends keep telling me how easy living gluten free will be for my little one. How manageable. How it will get easier in time.

Family seems focused on what she can't have. How deprived the poor thing will be.

This is all strangely familiar.

Aren't these the same comforts and comments we offer to those newly diagnosed with diabetes?
Going gluten free is not something I've been stressing over. If anything, I feel guilty at how fascinated I have been by the process. I've segregated my kitchen into gluten and non-gluten areas, I've found suitable substitutions for most of the foods she likes, I bought her her own toaster, etc. Truth be told, she avoids most gluten items anyway unless they are particularly sweet or salty.

I'm not afraid of reading labels (I already do that), I'm not afraid of educating future teachers (I have plenty of experience there). I already cook all of our meals at home (recipes to come, y'all).
I don't believe that my child will feel deprived. I don't think she'll suffer; as a matter of fact, I think she'll thrive and blossom on the new diet. I don't believe that complications from the disease are inevitable. I'm a realist, but never a pessimist. And celiac is largely an uneventful disease, much like my vitiligo (which I suspect she also has, for what it's worth).

I think I've raced ahead to thoughts that are hard to articulate.

In the beginning, diabetes seems like it will be about the needles and the test strips and the weighing and measuring of meals. It ends up being about something entirely different.

Diabetes is so manageable, people assure you. It will get easier, they promise. In the case of diabetes, these are little white lies we tell to offer comfort.

Autoimmune disease, though, is about living on edge. It's about feeling a little damaged. It's knowing that your body betrayed you and it's about suffering consequences every time your disease reminds you of its presence.
I don't know that I can make you understand the part that actually bothers me about my daughter being diagnosed with celiac disease. It's certainly not the condition itself (which she calls "silly act").

There is a Discussion That Must Not Be Named. We, the "damaged" parents, speak of it in private phone conversations, direct messages, close circles of confidentiality. We don't talk of it openly and we assure one another we shouldn't entertain these thoughts. These thoughts...

This thought:

My child inherited autoimmune disease from me.

I couldn't protect her. I breastfed her for 18 months, I introduced gluten while breastfeeding, I delayed dairy. I had a healthy pregnancy.

The hospital did force formula on her for five days despite my protests and tears. But really? It seems positively futile to place blame there. As my husband and I always say, you make the best decision you can make in the moment with the information you have.

This reality sought her out. It found her, despite how lovingly I wrapped my weak arms around her. It chased us down and wrenched her from me like a dark wind.

I wanted my kids to have only the best of me.

Yes, yes, it's "manageable." Livable. She will be "fine." She'll "never remember" a time she was celiac-free.

I know. (I should warn you that I genuinely don't accept comfort and support well. I will snap at you.) Yes, yes, I know. (Because I can handle anything.) Stop it. I get it. I mean, thank you. Of course, yes, we will be fine. Thank you.

I'm a support giver, not receiver. An information sharer. When I'm on the receiving end, I'm defensive and critical. It's not you; it's me. Seriously.

I know we will thrive, regardless, but I can't escape the feeling that I've lost something. A game. A race. An opportunity. A degree of innocence.

I also know that I can't know. I can't say definitively that it will end here, with this diagnosis...I can't see whether a more vicious autoimmune disease (like my own) lies around the next corner. But I can hope this is the last of it. I will keep my head up and ride on, chased by the wind.


  1. Wonderfully written. I loved it. GO forth and welcome to the world of gluten free. It ain't that bad.

  2. I get what you mean about your child inheriting it from you... I feel the same way about my thyroid disease.

    Everything else you wrote is true too... She will thrive, because you are her Mom. She is one lucky little girl. And so cute too!

  3. I completely understand what you mean, Melissa. Thank you for writing this. I often wonder how the auto-immune autism that my oldest has is connected to Grace's T1. It's a hard game to play with oneself, you know?
    I do know that she has a great Mama though and she is one very lucky and loved little girl.

  4. Such a powerful post, M! I've been having the same... thoughts... with this pregnancy. Hugs to you all!

  5. Your daughter is really adorable, and you're really awesome.

  6. Sending LOVE to you both. I was diagnosed with celiac at 14, one year after type 1, and it truly did feel more upsetting at the time in a weird way. "Whaaat? No more pasta with my Italian family?" It took me many years to truly appreciate what the gluten-free lifestyle does for my body, and the many types of junky foods it keeps out. Today, I appreciate it fully! But like I said, it took time! Take your time, take it day by day, and hey, maybe even the whole family will start to appreciate how they feel when there's less gluten around (7 out of 10 people are estimated to have significant inflammation to gluten, many of which are totally unaware). <3 <3 <3

  7. Thanks you so much for this, Mel. It's beautiful and enraging... to me, at least.

  8. I'm happy (?) to be following in your footsteps. I mean, at least there's that!

    Someone told me they'd introduce me to a friend who has "done everything perfectly to get the numbers down." I didn't even know there were numbers! Then I wanted to punch the person's friend in the face for being a braggy bagmeister. This is hard.

  9. And I'm crying. I love her. I love you. I love your honesty.

  10. I have tears. I get it. I don't have (yet) an autoimmune disease (that I know of). But both of my parents do. And my daughter does. It's hard not to feel responsible. Not feel... All those things we feel. And I feel guilty... Why not me? Why her? I have no answer. Just an I Get It.
    Yeah- you'll be fine. You'll rock this. You already know that. She won't remember - yeah- although that one pisses me off more than comforts me because it shouldn't be that way.
    My advice is to just let yourself feel how you feel. Because I have doubt that you've got this silly act thing!