As if living with type 1 diabetes for more than a decade now weren't enough... I also live with gluten intolerance. And it's no picnic, let me tell you. I'm certainly not alone in this, and today we're thrilled to hear from a D-Mom named Polina Bryson in California, who's extremely determined to "get it" when it comes to understanding her young daughter's reality with both T1D and Celiac disease. In early February, Polina set out on a mission: to live exactly as her daughter does, for a whole week.
Polina's been blogging about the family's overall experience at T1D and Gluten-Free since August 2013. Today, she shares a recap of what it was like to spend a week in her daughter's shoes.
A Guest Post by Polina Bryson
I salivated like a Pavlovian dog as I stared at the spread of scrumptious pasta lunch that was catered at my work. Italian food! Free lunch! Except when I opened my mouth, I had to force myself to say, “No, I cannot eat that today.”
My colleagues asked, “Why not? And what are those things on your arms?”
“This is a continuous blood glucose monitor,” I said pointing to Dexcom sensor on my left arm. “And this” – I tapped on the Omnipod pod on my right arm – “is an insulin pump. My daughter has type 1 diabetes and Celiac disease and this week, I am walking in her shoes. I am testing my blood sugar, counting carbs, and eating strictly gluten-free. It is my Awareness Project.”
As I retreated to my office with a rather sad-looking frozen entrée and a trophy can of Diet Coke, I laughed at how life knows just how to present me with a perfect opportunity to experience what I seek. My Awareness Project was born out of a random flash of realization I experienced one day while mindlessly reaching for a snack. I thought of how my 9-year-old daughter cannot mindlessly grab a snack, how her life is filled with rules, restriction and routines, and how I really do not know what it’s like to live her life. I decided to embark on a weeklong project to live her T1D and gluten-free life as closely as possible.
I was filled with a mix of curiosity, excitement and apprehension as I prepared to get started. I had to fill our fridge and pantry with extra gluten-free foods. I carefully planned my lunches and family dinners for the week. I tested the lancing device, after hesitating forever and whining to my husband how I was scared and wanted my mommy. I gathered spare and expired supplies that I would need to carry with me as if I had T1D and Celiac. Upon seeing how much paraphernalia I needed to stuff in my purse, I had to go out and buy a bigger one. My daughter did the honors of inserting the Dexcom CGM sensor and sticking a demo Pod on me, and I was off.
I thought that curiosity and a bit of adrenaline would carry me for at least a couple of days. Wrong. The novelty wore off in less than thirty minutes. Almost instantly I discovered how inconvenient and annoying “diabetes” was, made even more irksome by a gluten-free diet. I was stressed about having to make lunches for work every single day because there were no restaurants close by that offered gluten-free options. I hated lugging my gi-normous purse filled to the brim with diabetes supplies everywhere, all the time, even on quick errands. I nearly ripped off the Pod and the Dexcom sensor in the first couple of hours as I bumped into walls and doorways.
I was incredibly frustrated with how much “diabetes” required me to multi-task and how it interrupted my life. I charred breakfast toast (gluten-free!) because I got distracted by pricking my finger, while counting my daughter’s carbs, while counting my own carbs, while measuring our food, while frantically trying to avoid gluten cross-contamination, all at the same time. I found myself skipping snacks because I did not want to bother taking just one minute of my time to test BG when I was in the middle of work. I could not imagine how much more frustrated I would become if I had to interrupt what I was doing to treat lows or correct highs.
As the week progressed, some things started to fall into place. I got better at avoiding walls and furniture. I stopped feeling nervous every time the lancing device came within striking distance of my fingertip. I discovered that sticking to reasonable carb limits and carefully measuring my food worked for me, in that it prevented me from over-eating and still left me plenty satisfied.
Other things did not unfold as I envisioned.
I thought that wearing my bionic devices and testing my BG in the open would invite and promote questions and discussions about T1D and Celiac. People did ask me what I was wearing, but upon hearing my “elevator speech” they would say something supportive and leave it at that. Not one person asked me for more detail about diabetes or Celiac.
It became evident to me that my project was not as effective a platform for spreading awareness as I hoped. I also felt more and more like a fake. There I was, parading around with my gadgets, receiving all kinds of supportive comments about being a great mom, but what I was doing was so insignificant compared to living with T1D and Celiac for real. No matter what I did or what I ate, my BG stayed boringly perfect, and gluten cross-contamination was never a real threat to my health. It was all fun and games as none of my actions carried any potential adverse consequences. My daughter’s stakes are so much higher. Even if I went thorough the motions as accurately as possible, how much closer did it really get me to true understanding of what it’s like to walk in her shoes?
Despite my doubts and frustrations, my daughter was thrilled about my Awareness Project. She was absolutely delighted that I was trying to understand her life. She loved that she was not the only one following rules and restrictions and that she could watch me do all the things she had to do. She was excited to put her Pod on her arm as well so that we could be “twinsies." I could see that it meant a lot to her.
When the week wrapped up she told me that she would miss having me as her diabetic buddy. I promised her that from time to time I would still test my BG, count my carbs and measure my food. And now that I better understand her frustrations, I will try to be more patient with her when she does not want to interrupt her life to take care of T1D. I will never truly know what it’s like to walk a mile in my daughter’s shoes. Still, this project helped me get a little closer, and it helped my daughter feel that I care. That alone was worth all the effort.
Thanks for sharing, Polina, and especially for acknowledging that you can't really understand the reality of this life just by "testing it out" for a week. But you should know that your dedication has most certainly helped your daughter!