There are certain initiatives, or organizations, or movements (or all three) that are so fantastic and beautiful and necessary that they make you want to knock on every door and tell every person about them.

You want to throw fluorescent flyers through hallways, like they do in every 90’s movie involving a big high school party, to make everyone aware of the events that are unfolding.

You want to grab the hand of each person you speak to and say, Listen. This is important.

THE BETES is one such organization.

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Founded in 2013 by perfoming artist Marina Tsaplina, The Betes Organization’s mission is ‘to pave a path to joyful health for all people who carry chronic health conditions through creative and unique theater-driven programming.’

They are working in the emerging field of health (or medical) humanities, which focuses on the many roles of the arts in the realm of medical practice. There are so many aspects to health humanities, so many possibilities, that I find it difficult to give an all-encompassing definition. This field touches everyone: the medical practitioner and the patient, the person living with chronic illness and their loved ones. Art is an extremely powerful tool for empathy, understanding, communicating, coping and healing; the medical humanities embody that. The Betes embodies that, too.

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Every time I meet someone with diabetes in real life (which isn’t often), I immediately have so much to say and so many questions. I just want to know… how are you going through this life? What are you doing? How are you doing it?  I want to know everything, although I honestly probably say less initially than I even would when meeting a non-diabetic person. Because it’s like… we don’t know each other *at all* but we also already know *so much.* So yeah, I don’t ask all of these things that I always want to know, which are probably way more than you’d want to tell me anyway… not because it’s too personal (or maybe it is, I don’t know) but really, I’m very interested in the mundane stuff. Like, let’s talk about showering for a minute. Last week my blood sugar was 85 when I went to take a shower and minutes later, shampoo suds dripping down my shoulders, I had to climb out and drink a juice box in my towel. It was cold and annoying. Has that happened to you? I am interested in that.

And dreams. Today around 4am I woke up to a blood sugar around 75 that, after I went back to sleep without drinking the juice box that I’d meant to drink, continued to drop. I had a dream that I was driving a car and I was hairs away from rear-ending someone. I was having a hard time concentrating on driving. There were really two Me’s in the dream, because there was Dream Me #2 watching all of this like a movie, trying to figure out what Dream Me #1 was doing, watching the car swerve, wondering Is she driving drunk? Dream Me #1 pulled into a driveway and stumbled inside and told her mother that her blood sugar was low. Dream Me #2, still watching, thought, Ooooooh, okay, she wasn’t drunk. Mom asked Dream Me #1 what my blood sugar was. 57, I said. I was trembly and weak. I woke up, then, and continued to be trembly and weak. Of course, I was low, and I probably don’t have to tell you what my blood sugar was when I checked it. But, just in case, I’ll tell you anyway. It was 57.

Do you ever dream about diabetes? Is it ever true?

Also, what did you eat for breakfast and how did you decide to eat that and do you eat the same thing every morning? How much insulin does your body need for half a cup of mashed potatoes–I won’t think better or less of you, of course, I’m just always curious about the different needs of diabetic bodies–and in what ways do you exercise and which finger do you prefer to prick? Where do you take your injections usually, or what is life like with a pump and has it ever fallen in the toilet, and what are you like when you’re low–do you get angry, do you cry? have you ever passed out?–what’s the highest your blood sugar has ever been and tell me the scariest moment of diabetes and the funniest and has anyone ever been mean to you about it and how old were you when you were diagnosed and did you feel like the world was ending? Are you lonely? How did your last A1C make you feel? (I know, I know, but I won’t judge you, I just want to know humans with diabetes and how they actually live, I can’t base my life off of what doctors tell me, I’ll lose my mind, I’ll hate myself. Let’s just be open and honest because we’re the ones living it. Let’s make it more livable for each other.) Do you re-use your needles? Are you shy about testing in public? Do you have a lot of late night lows and do you also get excited when your BG is exactly 100 and where’s the weirdest place you’ve ever found a used test strip lying around? How much do your friends know about diabetes? Do you talk about it with them; do you want to? At what BG number do you feel the most safe? How has your relationship with the illness changed through the years and are you more or less afraid? What are you most afraid of and what is your go-to cocktail and what is your blood sugar now? What does a BG of 350 feel like in your body and what’s the deal with ketones, do you really use those Ketostix or is it in the same boat as changing your lancet after every prick? Do you have trouble sleeping and what are you going to eat for lunch? Do you like coffee? Are you doing okay over there? Is there any way I can help? Tell me your stories and I’ll always be listening and I’ll answer all of your questions too, my friend. Don’t worry.

Do you know a lot of other diabetics and where did you meet them and can I ask them all of these questions too?

And really… where do you put your body, hour by hour?

And, tell me, please, how do you cope inside of it?

 

 

There must be those among whom we can sit down and weep and still be counted as warriors.

―Adrienne Rich

Discussing diabetes didn’t come easily or naturally to me. Upon diagnosis, I wasn’t immediately swollen with a need to advocate, express, or connect. I swallowed the diagnosis quietly, called my friends and told them what was going on, and tried my best to enter high school two weeks later, head held high, as a normal 14-year-old girl.

I went to the nurse’s office three times a day: in between my second and third classes for a snack, before lunch to check my blood sugar, and after lunch to take insulin. The diabetics at my high school, there were four or five of us, each had a small plastic container with our supplies in it. The one next to mine belonged to a blonde girl named Stephanie, who was two years older than me. She was the only plastic box that I could ever assign a face to, the only person I ever crossed paths with in that school. We were both shy, and it seemed embarrassing to me at that point to spark up a conversation about chronic illness. Once, Stephanie’s mother came into the nurse’s office with her and suggested Stephanie and I exchange phone numbers. In that fumbling, awkward teenage way, we complied, but neither of us ever reached out. She graduated a year later, I think, and a year after that, she died in a car accident. I remember recognizing her in the news article, and reading the line, “She was working and volunteering for the Juvenile Diabetes Research Foundation – she’d been diagnosed with the disease at age 6.”

I didn’t meet anyone else with type one diabetes for a long, long time… not until I myself started working as a PR intern for the Juvenile Diabetes Research Foundation the summer after my sophomore year of college. There, one of the other interns, again two years older than me, had diabetes. We didn’t really talk about it, though. Sometimes one of us would make a passing comment or complaint, and the other would say, “Yeah, I feel you” but that was pretty much it. At that time, I don’t remember the desperate need for camaraderie that I’d felt many times before and after.

Amidst all of my friends and co-workers and classmates, diabetes was there and not there. It was there when I was drinking a juice box or taking a shot or sliding blood onto a test strip, only in that split second of visible diabetes management. In those moments, someone might strike up a conversation about it, which I always appreciated because I never talked about it unprompted. Often they would ask if it hurt. Often, they would say, “I never even knew you had diabetes because you never complain about it. You handle it so well.” How much pride I took in that… thinking that my silence was strength. Props, you’re not complaining about your chronic illness. You’re not letting diabetes “get to you.”

Oh, but

it did

it does

it will.

Talking about it isn’t weak. Talking about it is pivotal.

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When I was 22, in the spring of my senior year of college, my life with diabetes shifted by way of the Diabetes Sisters conference in Washington, D.C. On a whim, I applied for a scholarship to attend, and a few weeks later, I got it. I had no idea what a diabetes conference was or meant, really. But, I showed up alone, and I met Kerri and Stacey and Karen  and so many others. A group of us went out to dinner that first night, a diabetes tribe, and I remember worrying about it. Would they judge me? What should I order… a salad? Water? How do we all live?

Burgers were had by some, beers were had by some, (me included.) I ordered a salad, not because I felt like I had to, but because it was what I wanted. We talked and we laughed and we ate and we took insulin. How do we all live? We live like human beings. Like people, awake and alive and much more than an illness, but who also seek each other’s support in that illness.

Those dear people encouraged and inspired me to write a blog, and so Coffee & Insulin was born. And so I learned what the #DOC (Diabetes Online Community) is. And so I learned a thousand new ways I’m not alone.

Then, very recently, I met a woman named Amy who also has type one diabetes. I didn’t know how much I needed this beautiful friend… someone who lives in the same city as I do, who I can sit next to on a couch and weave in and out of diabetes conversation with, who I can text just to say, “I think I forgot to take Lantus this morning. That sucks.” and who always understands. I didn’t know how much it would mean. That not-so-aloneness changes things.

It changes things that I’ve struggled with for so long that I forgot there was any other way. I found a journal I kept my senior year of high school, when I was 17, yesterday. The very last entry was titled “I think I just had the worst low blood sugar of my entire life.” At that point, I’d had diabetes for under 4 years. The entry was pretty short, and talked about how trapped I felt by diabetes. I said I hated feeling like death, that I was tired, that I needed to be studying for exams. But more so than that, I spoke candidly about how alone I felt. More than anything, the loneliness. I wrote:

I want someone to understand what I go through. I want someone to listen to me talk about all my fears that come along with this and all the struggles. —I just want someone to know how hard this is for me and understand and tell me everything is going to be okay, but I can’t tell anyone because I don’t know who would listen.

I read the line, “I just want someone to know how hard this is for me and understand and tell me everything is going to be okay,” several times over, astonished at how this life can unfold. How I couldn’t have known what would be, six years down the winding road. Listen, Amy said to me the other week, after I wrote about feeling lost in the darkness of diabetes, everything is going to be okay.

It is, right? I want to believe that. I think I believe that. I’ll keep repeating it until I believe that.

Still, some things are less okay than other things and some things, in essence, are not okay at all. I doubt having diabetes will ever really be okay with me. I can’t really imagine ever thinking, A lifetime of diabetes? Yeah, this is fine. But I also think even when it’s not okay, it’s okay. Here we are with a life, full and throbbing. Here we are.

It’s astounding, it’s left me kind of speechless lately, how much more Okay the Not Okay things are when we connect with those who know, those who so profoundly get it, those who share the code of a body gone haywire. Even when we don’t actually know each other at all, we still know each other. It’s in our bloodstream, in our bone marrow. It changes things.

We’re going to be okay. I just didn’t know.

 

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10 years, the doctor said on the day I was diagnosed. There will absolutely be a cure within 10 years.

There is a quarter-sized indigo bruise to the left of my bellybutton, from the insulin shot I took this morning, because I decided to eat a bowl of cereal. What this means is, there is no cure. Not yet.

Today, I’ve had type 1 diabetes for one decade.

For several months after my diagnosis, my mom and I, every night, set an alarm for 3am to make sure I was still alive and would remain so until morning. Sometimes I would go to bed and my last thought would be, I hope I wake up. I was haunted by the horror stories of a bluntly named quiet death of people with type 1 diabetes: Dead In Bed Syndrome. I was 14 years old; I felt very young and very old and I still do.

There was an innocence that I lost before most of my peers, one of invincibility and frivolity and a certain freedom. I learned quickly that the things we think will never happen to us can absolutely happen to us. That no one is safe, ever, from anything. This truth is just terrible, isn’t it? And yet, so it goes.
Bear with me.

The doctors told me something else would happen 10 years after my diagnosis: I would probably start to see complications. The list of potential complications is very long and very bleak. Not right away, the doctor assured me. Not on the day (today.) But sometime. Sometime.

This ten-year benchmark has stuck with me, and I have dreaded it since I was that tiny, barely-teen sitting in a hospital bed. For most of the past decade, today has been a dark space in my mind, a place with something very real to dread. I couldn’t help but feel like arriving at it meant a safety net would be pulled out from under my feet; that I would suddenly need to strap on a Life Seatbelt. It wasn’t until very, very recently that I realized there was never a safety net, not in those first 10 years of diabetes, not before that, in my childhood, and not now. There is no Life Seatbelt. I turned 24 years old this week, and there is only life itself and my enduring hunger for it.

Every time my blood sugar is too high or low or my fingertips are numb or floaters pass my eyes, I feel all of my own fire and fight. I’ll do anything. I’m playing a game with rules that shift like the wind. I’m trying to imitate my body’s worthless pancreas while fully aware that I will never live up to it. All of this will never be enough. I am very tired and it is very endless. Yet I do it anyway, because if I don’t, I will die. And I want to live.

The most important thing I’ve learned in the past decade is this: life will bring you to your knees and you must get yourself up, because that is what there is to do here, and it is so glaringly worth it.

You might struggle to pay your bills.
Your heart might get shattered.
You might lose your mother or your brother or your friend.
Doctors might tell you that you have an autoimmune disease without a cure and they might hand you an orange-capped syringe and a cold vial of insulin.

And if they do, you must stick it in your soft arms and stomach and thighs seven times a day, every day, forever, because it means you can continue on with the rest of it. Count the carbs. Prick your tender fingertips. Take the shot even when it burns like wildfire. Take care of your wounded self.

I know how hungrily enamored I am with life by seeing it through wobbly eyes, a weak, darkened mind, and trembling limbs. I’m overwhelmed with how much I want to do and see and be. Chronic illness hasn’t stopped me; it has amplified me in ways both dark and light. It has shown me fragility and helplessness and fear. Also bravery. Also flux. There are so many possibilities on every spectrum of a thing. Anything can happen– this is terrifying and enlivening.

My first decade of life with type 1 diabetes was so many things, wild and unexpected and bright. I have no idea what the next decade will bring, but it no longer paralyzes me. I’m walking into it the only way there is– day by day. I know that I am still very young, and my enthrallment with life is all encompassing, and it is happening now. I don’t plan to wait it or wish it or worry it away. There is so much goodness here.

The lovely Cheryl Strayed once wrote to someone named Johnny in her Dear Sugar column, “We’re all going to die, Johnny. Hit the iron bell like it’s dinner time.”

Now, for any of us, I can’t think of a thing more vital to do.