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.

Vintage

Today's Prompt: Vintage. Post a vintage photo of yourself, with a caption about the photo and where you were in terms of your health condition.

a week or two after diagnosis, age 10, 1990

Early Injection, focused

with my state of the art Accu-check meter kit

Getting Your Letter

Today's Prompt: Health Activist Choice Day 2! Write about whatever you like.

It seems like everyday I meet another person (or the parent of a person) who is newly diagnosed. Wouldn't it be nice if we got a Hogwarts style letter?

Dear ______,

Congratulations on your diagnosis of TYPE ONE DIABETES. Welcome to our ranks.

You are joining an exclusive club, a million strong here in the USA. We have a secret handshake.* (Please learn this in advance of your first endocrinologist appointment.)

Enclosed in your welcome package, you will find the necessary tools to get you by:

-thousands upon thousands of syringes
-a new appreciation for life
-insulin - the hormone you'll be replacing externally and synthetically for the rest of your life (and that could kill you if you take too much of it)
-an extra ounce of strength
-a deck of "keep your ignorant comments to yourself" cards for friends and family
-a calculator
-blood glucose testing supplies
-a bottle of extra-strength perseverance
-12 ass kickings (use these sparingly on yourself as the years go by)
-a logbook (you'll likely never use this)

You don't have to know everything about the condition to get started, but you will have to jump in with both feet. Besides, what we know today may change tomorrow. Be ready for that.

We may not always inform you of changes to your membership agreement, but you will be responsible for purchasing new tools, educating yourself on new techniques, and conforming to changes in standards with or without notification.

To this end, consult your insurance plan. You will find limited coverage, so good luck with that. We here at LifeChanging Diagnosis cannot intervene or be held liable for costs incurred.

Your enrollment is retroactive, effective the moment that your immune system waged war on your unsuspecting and innocent pancreas.

If you have any concerns or questions, please consult one of our following member services departments:

-The DOC (Diabetes Online Community)
-Google/Wikipedia/WebMD
-Your Doctor
-Your co-worker who knows that guy who weaned himself off of insulin because he stopped eating cookies and started that raw food cleansing diet...

We look forward to your subservience!

Sincerely,
LifeChanging Diagnosis, LLC

*Ha. Like I'm going to share the secret handshake on a public blog!