Dear Lilah

7/28/16
WRITTEN BY: Samantha Willner
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My friend Lilah and I have an exceptional bond; however, we are admittedly rather different. For instance, she’s an outdoorsy type who loves soccer, whereas I’m more of a bibliophile. Yet another difference is that Lilah’s family pet is a basset hound named Snickers, while mine is a mercurial tuxedo cat called Moses. She has two sisters compared to my three brothers, not to mention they live in California while I’m across the country in New York. The dissimilarities are endless, but perhaps the most glaring is our age difference. You see, I recently turned 26, and as for Lilah, well, she’s just a smidge over eight-and-a-half.

Yet we are most definitely friends in every sense. We share secrets, exchange probing questions, send little gifts, and of course, support one another when life gets tough. That’s because Lilah and I have one important thing in common despite all our differences: We both have Type 1 diabetes.

Due to this commonality, we were serendipitously matched as pen pals through a T1D letter writing program created by Beyond Type 1. This program is called the Snail Mail Club. Equipped with sheets of fun stickers and BT1 stationary, Lilah and I have been exchanging handwritten notes every few weeks, sharing insight into our divergent lives, and of course, talking all things diabetes.

“Dear Lilah,” I begin one such letter, “that is so cool that your dad coached your soccer team last year! Hey, what kind of pump do you wear? Oh, and what’s your favorite food to eat when you’re low?”

“Hi Samantha! Thanks for my pancreas, I love it!” writes Lilah in yet another, this time referring to the symbolic cartoon key chain I tucked into one of my early responses. She diligently answers each of my questions, often transforming a number of O’s into little hearts, always concluding with her own eager set of inquiries back to me, usually accompanied by a few backward question marks. (Most recently: “Are you a tomboy or a girly-girl?”)

Any time I write to Lilah, I first imagine myself when I was a little girl with T1D. Sometimes the girl appears to me at age 6, sitting on a bench at the playground feeling dizzy and confused, her mother squeezing blood from her finger while her friends continue playing without her. Other times, she’s 11. A boy in her class is whispering to the other students, “Don’t sit near Samantha or else you’ll catch diabetes!” as waves of shame wash over her. Still at others she’s 14; angry and depressed, refusing insulin injections and ignoring doctors’ orders.

I imagine what someone could have said to me during those difficult times; how things might have been easier if only I had a confidante or mentor, someone who would understand my feelings completely without judgment or reprimand. Then — as best I can — I become what no one could be for me, except this time, for Lilah.

“Dear Lilah,” I write, turning my “i” into a heart to match her style. “What frustrates you most about having diabetes?”

“Hmm. I hate having to wait ten minutes before eating!” she answers a few weeks later, and despite my long experience with the same hardship, I can’t help but think as I read, “Ugh, I hate that, too!”

On my bookshelf, I keep a photo of Lilah which she included in her first letter to me. In it, she’s smiling brightly, clad head-to-foot in soccer gear, a ball tucked under her arm. Between our correspondences, I use the photo as a reminder to be conscious of my actions. It’s a prompt to make healthy choices, and to show courage even when I’m afraid. Because when I write to Lilah, my deepest desire is to model qualities she can mirror, ones that will be helpful as she navigates the daily struggles of T1D.

Though truthfully, it’s easy to aim high with someone like Lilah as your pen pal. More often than not, she becomes my inspiration as much as I seek to be hers. Her innocence, perpetual optimism, and bravery shines through every word she writes. As I’ve come to know her, I’ve discovered that the lingering shame and loneliness that erupts when I imagine my childhood with T1D magically transforms into something like wisdom — into something like healing.

“Do you still get scared putting your insets in?”

The question came from Lilah in a letter this past July, followed by the solemn admission, “Because I do.”

I knew this question was serious because there were no little hearts in the O’s, no trios of exclamation points. More so, I knew because as I read it, an image of myself no older than 5 appeared in the back of my mind, her face soaked with tears as she was forced to endure yet another injection; an endless procession of pokes and prods. I remembered distinctly how those feelings lightened the moment I was brave enough to attempt the injections on my own, thus regaining some semblance of control. Concentrating on this feeling, I crafted my response.

“Dear Lilah, yes, I get scared changing my pump site, too. Sometimes it hurts and it’s not fair, is it? When I do it by myself, though, I don’t think it’s as scary. Have you ever done an inset on your own?”

I sealed the letter in an envelope decorated with dancing insulin pumps, but as soon as it was in the mailbox I worried that a boundary had been crossed. Thinking this time with my adult brain, I wondered if she was yet mature enough for the solution I was suggesting. It was very possible her parents would be uncomfortable with the idea of her managing such a large responsibility on her own.

A week passed, and there was no answer; no Instagram notification from her mother, Dorothy, on my phone; no photo on Facebook of Lilah holding my letter proudly with the hashtag #BT1SnailMailClub. My fears grew in the silence, and I wondered if I had misconstrued our relationship, confusing Lilah’s experience with my own.

Then, days later, I received an e-mail from Dorothy, and I was certain she was going to ask me to refrain from making such aggressive suggestions for her daughter, perhaps even to stop writing altogether. As I scanned the e-mail with its many exclamation points, I realized it was not written by Dorothy at all.

Dear Samantha,

This is Lilah. You know how you said that doing your own insets makes you not so scared? Well, guess what I did on Saturday? I did my own inset! Because you encouraged me!!

So mommy let me send an email to tell you now so you wouldn’t have to wait for my letter!

Love,

Lilah

I was beaming, my heart exploding with pride, so relieved that my fears had not come to fruition and utterly overwhelmed with joy. Pressure began to build behind my eyes, and suddenly I was crying both tears of happiness for Lilah and tears of healing for little Samantha who — in the wake of Lilah’s little act of courage — could forevermore give a happy ending to her story, one that merged past into present, youth into adulthood. I read the email again, and again, and again, blotting away tears, planning my next response of many to my beautiful forever friend.


Read The Pen Pal that Changed My Daughter’s Life Dorothy Hinds, mother of Lilah. Sign up for Snail Mail!



Samantha Willner

Samantha Willner was diagnosed with Type 1 diabetes in 1991 when she was just one year old. Since then, she has played an active role both personally and professionally in the diabetes community, previously working for JDRF International as a donor relations director and chairing the JDRF mentor program in NYC. Samantha also holds a B.S. in Communication from Cornell University and recently earned her MPH from Yale, where she conducted original research on barriers to insulin access affecting U.S. adults with type 1 diabetes. Currently based out of Philadelphia with her T1D husband and fellow GAC member, Ryan Campbell, Samantha is passionate about being a role model and inspiration for type 1 children and teens. For more insight into her life with T1D, you can follow her on Instagram @samanthawillner.