Those Who Know

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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2 Comments

  1. Avatar November 16, 2015 / 12:55 am

    Hi Sara, I have had Type I diabetes for over 25 years. I know where you are coming from. My Mom gave me the best advise. “If its not a big deal to you, it won’t be a big deal to others”. We are as sick as our secrets, so EVERYONE I know knows I have diabetes. I was an ER nurse when diagnosed and literally the staff of Baylor ER and the paramedics in the Dallas Fire Department saw me stick, poke and inject. In being open, I had their support. I had worked for more than a year 12 hours every shift side by side with someone who was T1D, cared for hundreds of patients with T1D and met many people over the years who were T1D. My thoughts early on “Thank God its not me! I couldn’t do that”. So I knew what the disease could do – I was scared out of my mind. I lived alone with no one to check on me or help me when I wasn’t at work or with friends. To “manage” I vacillated from only being “diabetic” to blowing it off and doing whatever I wanted. I am a control freak, Type A by nature so every blood sugar that wasn’t perfect made me feel bad. That feeling bad eventually got too bad and via a series of coincidences, I ended up in a counselors office. Turns out my problem wasn’t diabetes, it was how I handled problems. I avoided them and T1D was one I couldn’t avoid.

    Fast forward and I want to share this with you. I LOVE having diabetes! Crazy right? But consider the alternative – 100 years ago we would both be DEAD! I choose life and I choose to LIVE IT. I can’t hate a part of who I am. Life is too short. Diabetes was the first time in my life that I CAME FIRST, it allowed me to be vulnerable and ask for help. Is it inconvenient – HELL YES!, but it does not define me. Everyone has some thing they must deal with. ADHD, cancer, blindness, insecurities, etc. etc. But I know that you become what you believe and I believe My Journey Matters. So yes, I have some extra baggage on my journey, but I still get to have a journey. I am grateful that T1D changed the course of my life, for if that had not happened, I would have not had to draw from within to figure out what I wanted on this earth, I would have not met my husband, I would not have switched careers to do what I ‘really wanted to do’, I would not have 2 beautiful children at age 39 and 41 against all odds. I quit asking “Why me?”

    I believe the biggest gap in diabetes management is coping skills. No one comes prepared. Imagine if you had to hire someone to do a really hard job- you wouldn’t want someone who was mad, sad, scared, angry, fearful, lonely or depressed. You would never believe they would do a good job, but our healthcare system does it every day. They focus on the technical side (food, insulin, schedules etc), but not the emotional side. Until you make peace with your reality and the hand that you have been dealt, you will always feel like a victim without much control. If possible, go see a licensed therapist (not a psychiatrist – they just dole out drugs) who can help you make peace with diabetes. For me it is my child, I must feed and care for it as if my life depended on it. And it does. I have to love this child. I am sending you a big virtual hug. You got this!

  2. Avatar
    Kate
    November 17, 2015 / 1:38 am

    Thank you. I couldn’t have expressed my own experience any better.

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