Burnt Out, Swearing, Still Going

From the balcony, I observed the neighborhood malcontent: bones bursting from his neck, he balled his fists, looked up into Madrid’s flaming July heat, and released a primal scream. The woman across the way, who plucks her chin hairs in the window on Saturday mornings, edged her curtains to the side and turned a worried gaze downwards. I turned to face J, who was stifling a laugh as he approached: not malicious, but impressed.

“Now that,” I said, “is authentic.”

There is nothing enviable about the man trapped in his own madness, but his wild screams, directed at no one in particular, seem to me a sort of metaphor for the myriad of frustrations we lock away in the name of social propriety.

I thought of this man as August slipped by and type 1 diabetes celebrated two decades of residence in my body. Like everything–relationships, hobbies, goals–life with chronic illness has its seasons. The season I celebrated in Year 19 might be called: I’m  sick of this shit. In April, I’d burst into tears at the public health clinic when a new nurse refused to give me test strips without first taking a fasting blood sugar. At 1 o’clock in the afternoon, this was impossible for reasons obvious to anyone who has ever been a human. “This isn’t a supermarket” he said once, and then again. In June, my blood sugar graphs looking like Six Flags Theme Park and my morale in the gutter, I took a refresher course with the endocrinology nurses at the hospital. They reminded me of my mother: caring as hell but not here for my excuses. “Life’s hard, but you have to find a way. Don’t be afraid to die at night.”

In the name of social propriety, I’ve spent many years saying that type 1 diabetes is “fine” and “I’m used to it.” Oftentimes, I’m telling the truth, but sometimes what I really want to say is that I feel overwhelmed, angry, exhausted, and scared. Sometimes, I feel like screaming at the top of my lungs on a public street, no fucks or explanations given. Sometimes, even twenty years into it, I’m still not used to it.

On my twentieth Diaversary, I did not celebrate or grieve. I woke up and kept going. In two decades, I’ve learned gratitude, acceptance, and humility, forgotten those lessons, and then learned them again. I’m grateful for my health and determined to keep it, forgiving myself for the moments when it all feels like too much.

From Fear to Gratitude

Day 4 of Diabetes Blog Week encourages us to share how emotion plays a role in our lives with diabetes. Today I’m re-posting something I wrote back in September because I touch on an emotion I felt fairly often growing up (and still sometimes today): fear.


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My grandmother wrapped gauze around my grandfather’s wound. His leg had been amputated at the knee.

“Ew, that’s gross!”

I said it from the comfort of their velvet armchair, my own two healthy feet hanging over the cushion. My grandfather sighed.

I was diagnosed with Type 1 Diabetes when I was 8 years old and just a year later my grandfather passed away from complications of a long undiagnosed case of Type 2. I don’t know how children tend to confront death; grief is a world of its own even for fully grown adults. It may be simpler for kids, though. In the best of cases, they don’t feel any personal connection to the world of aging and disease. Perhaps children understand that death is final, but they remain infinite and immune to their own mortality.

At my grandfather’s funeral, I cried. I watched my father and my uncles carry his casket to the front of the funeral home and I wondered where he would go. After the family luncheon, my cousin and I named an old oak at the park our “praying tree.” We skipped around its trunk—praying, I suppose, although we’d never gone to church. I was nine years old and I knew that my grandfather was gone and that it had something to do with a disease that I also sort of, kind of had. However different their roots and treatments were, we both had diabetes. I was vaguely aware of the fact that their potential complications were the same. I also knew that I felt afraid, so I ran faster around the tree. I remained aware and afraid of that shared dysfunction as I moved through childhood and into adolescence. People said insensitive things to me that made me feel inadequate and weird and broken and I remembered those two words of mine—“that’s gross”—with shame. At doctors appointments, we talked about numbers and carbs and basal rates, but my fears went unshared. I didn’t want to have them, much less hear them out loud.

A week ago, I went to Marshall’s department store. There’s a JDRF fundraising table at the entrance. The familiar paper sneakers, signed by donors, cover a bulletin board and there are photos of people with diabetes from around the country—young and old—asking for a cure. A photo of a boy, age 7, is accompanied by a quote: “I want a cure so other kids don’t have to lose their carefree childhood like I did.” I read it, suck in air, feel my eyes well up, and walk fast to the shoe section, thinking do not cry at Marshall’s, you nutcase.

My short life has been a full one and I don’t plan on stopping. I have learned and made more mistakes than I can count. I’ve been nauseatingly happy and I’ve also known what it’s like to feel incapable of getting out of bed—for reasons strange and varied and, more often than not, unrelated to diabetes. Fears were unspoken in my household. They still are. I closed the door on them, found a bathroom to cry in, or a notebook to scribble them on. As I fumbled my way into adulthood, I learned to shift my focus from fear to gratitude—gratitude for all of the technology and education that has allowed me to live a life that would have been impossible just a short of ninety-five years ago; a life that still remains out of reach for many diabetics around the world. Gratitude for a community of people whose experiences differ from my own and offer me perspective. Gratitude, even, for those intense moments of fear and uncertainty. They are the feelings that have made me, for better or for worse, a person who respects each person’s story. I have met and loved and been inspired by people who have lived lives different and more difficult than mine. I have also met and loved people whose struggles drowned them—not because they were weaker, but for reasons as infuriating as lack of access and as senseless as “chance.”

Still, I remember those occasions when I felt I’d lost part of my carefree childhood and I wonder if we were not so inclined to grin and bear our fear, to breathe it into bathrooms and notebooks rather than those who love us, we might learn to accept ourselves sooner rather than later.

In Little Virtues, Natalie Ginzburg writes:

“There are two types of silence: silence with oneself, and silence with the rest of the world. Both forms make us suffer equally. Silence with oneself is dominated by a violent apathy that invades us down to our core, by contempt for our own soul, so reviled that we dare not say a single word to it. It’s clear that we must break the silence with ourselves if we want to try to break our silence with others. It is clear that we have no right to hate ourselves, no right to silence our own thoughts.

… Every day silence harvests its victims. It is a mortal illness.”

While every person’s journey is different, their ways of understanding life distinct,  I know we all benefit from being able to say “I’m scared, too,” from having tough conversations in order to make room for the ones that recognize all we’ve gained, and everything we stand to learn.