The World Of My Illness

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This past weekend, I stumbled upon the blog I kept before this one. I started it when I was 20, as a study abroad blog for my semester-turned-year in France. I got sucked into a vortex of drinking wine and scrolling through my old posts while waiting for a friend to pick me up on Saturday night, and besides making me feel like I need to quit my job, sell all my shit and hop on a plane to anywhere this very second, this old blog of mine also made me feel happy-sad for one specific post that I wrote on there, titled “Dear Type One Diabetes.”

I remember writing it. It was mid August. I was 21; a few days shy of having diabetes for 8 years.

Sitting on a futon in my dad’s living room with my cat, Kitten, lying beside me, I remember opening a blank word document and burning through those words with a fever of 8 unwritten years of life with a chronic illness. I wrote exactly how I felt, and then I filed it away somewhere on my computer with all the other personal writing I’ve had no intentions of ever making public. But then the next day, I went back to it. And the next day. And I kept thinking, I want people to know how this feels to me.

But I also thought, but they won’t be interested in this. People are interested in the foreign countries I visit. People aren’t interested in the world of my illness.

And then, finally, I thought… fuck what the people are interested in. Here is my truth.

I posted in on that blog, and then several minutes later, I deleted it. I posted it again, shared the link on Facebook. Deleted it again. Did it one more time and shut my laptop and walked away for 3 days. The next time I logged on, I had more responses on that one post than any other, ever. Supportive, beautiful responses. I think some people close to me were kind of shocked, since I rarely ever ever ever talked about diabetes. I remember one of my closest friends, Kayla (who to this day reads every single one of my Coffee & Insulin blog posts and whose sweet words and encouragement are always giving me strength) (Kayla, I know you’re reading this. I love you.) said to me, after reading this open letter to diabetes, “I always knew you were strong, but I didn’t know how strong.”

The incomparable Flannery O’Connor once said, “I write because I don’t know what I think until I read what I say.”

I find this to be very true in my own life. Writing about diabetes continues to be shocking and informing and essential to me. Sharing it, too, has become extremely important, although being so publicly vulnerable is still scary. I still think to myself sometimes, Am I going really going to post this in the vast, sprawling internet universe? Sometimes, my answer is No, and I don’t. But it is often Yes.

Thanks to those who help me feel brave enough to share these things with you.

This is how it began:

Dear Type One Diabetes,

In 3 days, I will have officially known you for 8 years. Not yet half of my life, although it feels like you’ve infiltrated my whole life. Looking back, I can’t remember a time when you weren’t on my mind. I can’t believe I’ve lived without you almost twice as long as I’ve lived with you…. although I won’t always be able to say that. You’re here to stay as long as I am.

You’ve been with me through the craziest years of my life. You introduced yourself a mere 2 weeks before I began high school. A mere 4 days after my 14th birthday. Before I really knew you, you made me thirsty. You made me pale. You made me lose 15 pounds in 2 weeks. You made my head hurt. You made my mother worry, and take me to the doctor. You put me in the hospital for 4 days, and by the time I left, you had spread to every tiny part of me. My arms, my legs. My mind, my body. Where I go, you go. Always.

To your credit, you’ve been a great teacher. You’ve taught me responsibility. You’ve taught me body-consciousness. Nutrition. Carb counting. You’ve taught me human fragility and human strength. Awareness. Highs, lows, spikes, crashes. You’ve taught me that I’m playing a game with no concrete rules. You’ve also taught me guilt. Lots of guilt.

Out of the past 2,920 days, not one has gone by without me worrying about you. Adjusting for you. Trying to stabilize you, tame you, make you do what I want. Some days I succeed, others I don’t. There is no real winning against you, there are only good moments and tough moments. Sometimes scary moments. But lots of small triumphs, and those are what keep me going.

After 8 years with you, you seldom surprise me. I’m glad when I feel in control of you, but when I don’t, the rest of my world doesn’t disintegrate. A blood sugar of 342 doesn’t cause a breakdown. It causes a dull disappointment, a pang of guilt, and a 3-unit insulin injection. It will add to a tall pile of high blood sugars that will eventually, if piled too high, result in dangerous consequences down the road.

“Down the road” is an ambivalent term with you. “Down the road” makes the present moment seem safe. It eases the guilt of a high blood sugar, because as long as I don’t have another one, the “down the road” consequences will magically remain “down the road” forever, right? How far is “down the road” really? How is it measured? By years? By high blood sugars? By finger pricks? I have a feeling “down the road” just happens one day, as quickly and painfully as you did.

The weight of you really weighs me down. The instability of you causes instability for me. We are one, you and I. Fighting you will only hurt me. Closing my mind to you will only turn my mind against myself. You know, “down the road.” When I was diagnosed with you, the doctors told me I would experience something like the 5 stages of grief. Denial, anger, bargaining, depression, acceptance. I didn’t experience you like that, though. I’ve experienced all of these moments with you at some point, but, as in everything with you, there is no straight line. You are all grey area.

Sometimes I’m angry at you. Sometimes it hits me out of nowhere, like that day when I was 14, that I have you. Sometimes the realization of the gravity of you, the seriousness of you, knocks me to the ground. But most of the time… it doesn’t. I can’t walk through life carrying you on my shoulders. I certainly can’t walk through life pretending you don’t exist. So, to the best of my ability, I walk through life acknowledging you lightly, but not dwelling on you. Respecting you and your needs, which are my needs, too, and working with you. We share the only space I have to live in. For as long as I can, I won’t allow you to take it over.

I don’t want to fight with you. It doesn’t make me feel good. I also don’t want to cave into you. I don’t want my life to cater to you. I don’t want to prick my fingers 10 times a day and stick a needle in my stomach for you. I don’t want to wince for you, and bleed for you. But, beyond all else, I sure as hell don’t want to die for you.

So, I will bend for you, but I won’t break for you. I’ve made room for you because I had to, and I will make adjustments accordingly because I love myself more than I hate you. We’ve known each other for 8 years now, bucko. You’ve been better, and you’ve been worse, and that’s just how it goes, but lately I’ve been thinking a lot about you and our relationship and I’ve been challenging it. Maybe there’s a better way to treat you. There is no easy way, but there are other ways, and I will no longer accept you as what you are with no questions asked.

So, in the near future, you might be a little off balance. You might be confused and disoriented (and I might be, too.) But if there are better ways to treat you, I plan on finding them. I don’t want “down the road” to come any sooner than it must, and every time that the tips of fingers go numb, or a floater passes my eye, or I struggle to think straight, I remind myself that although I have you, you do not have me, and I will do everything in my power to keep it that way.

Infinitely,

Sarah

 

I still feel so attached to everything I wrote here, although if I wrote the open letter now, it would be so different. Things are just always changing, aren’t they? If you’ve never written to your illness (or whatever your own struggle may be) instead of just about it, I highly recommend it.

There is power is saying things directly to the source of your pain.

There is power, also, in letting it be known.

 

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2 Comments

  1. Avatar Donna Mitchell December 23, 2015 / 4:17 am

    Powerfully, beautifully, and impeccably written, as always! It reminds me a lot of something Elizabeth Gilbert wrote about fear. She said she had spent a lot of time trying to do away with fear but she finally realized that it was never going to leave her so now she willingly brings it along with her wherever she goes and she respects it and honors it as a part of herself, but she makes it sit quietly in the backseat and it can only talk when she allows it to and she sure as hell won’t let it drive the car! If you haven’t read that piece you should look it up. It’s pretty hilarious, but also very meaningful. Thank you for your posts, Sarah. They’re always worth reading.

  2. Avatar jaiecrit December 23, 2015 / 10:05 pm

    I guess Sarah you should write another open letter to see how things are different. And I love your words, your sensitivity, your strength so much, and I need you and your wisdom a little be more in my life <3

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