“Silence is the ocean of the unsaid, the unspeakable, the repressed, the erased, the unheard. It surrounds the scattered islands made up of those allowed to speak and of what can be said and who listens. Silence occurs in many ways for many reasons; each of us has his or her own sea of unspoken words.” —Rebecca Solnit
People used to say to me, in my high school and early college years, Wow, you handle your diabetes so well, you never even talk about it! I quickly began to equate those things with each other: that silence and that strength, and decided that silence was strength. It was a learned loneliness that took me 9 years to begin unlearning, and I still am.
I do so, mostly, by writing it down, the way I’ve (un)learned most things in my life.
On the day of my 8th anniversary with diabetes, sitting on a futon in my father’s living room while I was in between places to live, I sat down and wrote an open letter to Type 1. I say wrote, but really, poured would be a better word. That interior conversation, from me to T1D, poured out of my mind, heart, chest, fingertips. I wrote everything I’d felt, carried with me, but never said out loud. I had no intention of sharing it with anyone, and saved it as a Word document on my computer. But I kept feeling this tugging, and this tugging was… just wanting to feel heard.
After a few days, I posted it on the travel blog I’d used while studying abroad. Then I debated some more, whether I wanted to share the link on Facebook, because it was personal, soooo personal. I felt like I’d just taken the heaviest parts of my heart out of my chest, and smeared it onto virtual paper. I imagined holding that out with trembling hands, and I was afraid. Afraid I would be met with disinterest, apathy. Not afraid people would be mean—I’m not sure that crossed my mind—but wildly afraid that, simply, no one would care. That no one would be even a little bit interested in this part of my life—this huge, heavy part of my life. I was afraid I would still feel alone—more alone, even, than before.
I ended up sharing it, because the pain of staying silent—of compartmentalizing myself so much—became greater than the pain and fear of putting it out there in the world.
This is how we unlearn. It feels shaky. It takes guts.
My writing was met with kindness. Empathy, interest. I always knew you were strong, one of my closest friends said to me, but I didn’t realize HOW strong.
I had no idea was the response I received most. I knew you had diabetes but… I had no real idea. That’s how I started to trust that I had a story, and a voice that could tell it. It started in whispers. Written-word whispers.
Half a year later, I went to the DiabetesSisters Conference near DC, and this changed everything for me. Writing that blog post made me feel heard, but I still didn’t know anyone else with diabetes, and I had a tug about that, too. I still felt alone. This conference, this room full of women who shared this lived experience deeply and daily—this is where I came to feel known. It was, as Marina Keegan once wrote, “the opposite of loneliness.” Soon after, I connected with the Diabetes Online Community, started this blog, and began writing my way through this lived experience of chronic illness. I’m not exaggerating when I say it is the healthiest thing I’ve ever done for myself.
Silence isn’t a parameter for strength. So many of us, in different ways, are taught that it is, and this causes immense suffering.
And, too, there are those scattered islands Solnit referred to, made up of those allowed to speak and of what can be said and who listens. Through the years, I’ve had to fight to be heard by doctors, by insurance companies, by pharmacy technicians, and by misinformed individuals with stigmatic opinions. I’ve had to defend the way my body works, and fight for what I need in order to stay alive. And now more than ever—the personal is political—we must recognize the vitality of our voice, and of our story.
“Words bring us together, and silence separates us, leaves us bereft of the help or solidarity or just communion that speech can solicit or elicit. […]
We are our stories, stories that can be both prison and the crowbar to break open the door of that prison; we make stories to save ourselves or to trap ourselves or others, stories that lift us up or smash us against the stone wall of our own limits and fears. Liberation is always in part a storytelling process: breaking stories, breaking silences, making new stories. A free person tells her own story. A valued person lives in a society in which her story has a place.” —Rebecca Solnit
In creating Coffee & Insulin, I made a homebase for my wondering and wandering life with Type 1 diabetes. I’ve done so much seeking, questioning, processing, and growing in this space over the past 3 years; it has been a shelter, a place of voice-strengthening and load-lightening, and friendship-building. The very best part of it, undoubtedly, has been the ability to connect with people all over the world. I’m honored every time someone writes to me, and shares their own story with me. A few months ago, a woman in her twenties wrote to me from Italy. An excerpt of what she said was:
“Maybe I will try to tell my story, in a similar way as you do. Mostly, I think I want to tell myself my story. And maybe share it with other people, who knows. I guess I realized I can have a story to tell.”
Everyone has a story to tell. For those of us living with diabetes or another chronic health condition, however, I think it is even more vital to find a way to express, transform, release, and connect to what we live with, and how we feel about it, and how we navigate it. This is why the arts are so incredibly important.
Here’s something: Write a letter to yourself, to your health, to the universe, to the government, to your family, or to me. This is the unlearning. Get to know your own story, then say it out loud. Even if your voice shakes. Especially if it does.