Diabetes is every day, but burnout doesn’t have to be.
The last time I cracked the binding on these journals was back in 2009, when I was cleaning out the apartment I was living in at the time. I happened upon them again last night, while searching for something in the attic. (I never found what I was looking for up there, but I did come down with a bunch of stuff I wasn’t looking for. Going into the attic is like going to Target.)
As I wrote a few years ago, these journals span the better part of ten years, starting from when I was about eight years old and going into my junior year of college. They’re old, and tattered, and it’s fun to flip through them and see what was top-of-mind for a ten year old. In the earlier journals, diabetes is rarely mentioned. There are mentions of attending Clara Barton Camp, but nothing really specific about diabetes or insulin injections or any of the tasks I knew I was tending to at the time. (I was busy being “just a kid” and not “a kid with diabetes,” which is the kind of childhood I was happy to have.)
But one entry, from back in 1999 when I was in college, talks exclusively about diabetes, and the period of burnout I was in.
“I have been diabetic for 13 years (this September) and I don’t know if I’ve taken the best care of myself. I have eaten a lot of the wrong things. I don’t exercise enough. Even though I still test, I am reluctant to test and last week, I saw a 50 and a 350 in the same day. Not okay. I hate taking my insulin shot. I’m really scared of lows, especially after the one when I couldn’t find the honey jar fast enough. My A1C runs at levels that makes my doctor raise an eyebrow sometimes because she knows I’ve been thinking about having a baby some day. I went to the Joslin Clinic last Thursday and they said I need to start thinking now about having babies much later. Which is hard to think about, since I don’t even have a father for these not-yet-made babies. Am I screwing up my chances of having a baby by having trouble controlling my diabetes? It’s a weird place to be in, worrying about stuff that won’t happen for a really long time, but that’s how diabetes is – makes you worry about all the crap in the future that other people might not think about until it’s actually happening. Must be interesting, not banging your head against a crystal ball all the fucking time.”
I wish I could send that girl a note, the 20-year old me who wrote with painstakingly neat handwriting (shocking, compared to the scrawled EKG graph my pen produces now), and tell her that just a decade or so later, she’d be sitting at her kitchen table and drinking coffee, having just sent her three year old daughter to school for the morning. That even after crossing the line into “complicated,” it’s still okay. The payoff seems irritating at times – “Work hard and the reward is … to keep having to work hard?” – but the alternative is unacceptable. Life with diabetes often means trying, and continuing try, even when you don’t want to.
I’d also suggest that she stop cursing so much back in the day, because surely she’d kick that habit as an adult.
“You want to try again?”
(Thanks for your comments and emails yesterday. The support found in these kinds of patient communities help so many of us to keep trying … again and again and again. Thanks for what you’ve done for me, and what you do for so many. Now go outside and roll down a hill, because it’s pretty fun. Just be sure to wear shorts under your dress.)
A few weeks ago, I was diagnosed with macular edema.
It’s a complication you can’t see, one that I can’t see until I can’t see. Sophisticated computer equipment and camera technology have afforded me the opportunity to find out early, giving me the chance to track this issue closely and opt for aggressive treatment options (laser surgery, medicated eye drops, intra-ocular steroid injections) when the time comes. I feel raw and vulnerable, but I have information. I have access to excellent doctors and specialists. I have options.
I also have a bit of a stomach ache because when I asked, “How can I keep this from becoming more of an issue, going forward?” the response was, “Keep your glucose control as close to ‘normal’ as possible.”
It’s the “as possible” bit that throws me.
It could have been the birthday cake?
It could have been the cupcakes I snuck, and lied about, as a kid?
It could have been NPH and Regular and hormones and the “brittle diabetes” moniker that they wrote in marker on my chart at the hospital made “normal” a definition built on shifting sand?
It could have been the pregnancy hormones, or the period of diabetes burnout I experienced after my daughter was born?
It could have been anything. Everything. It could have been the years of struggling. It could have been the quick transition to tight control. It could have been bad genes, or good genes, or tight jeans. It could have been everything I did, or didn’t do.
The truth is, it was type 1 diabetes.
We don’t talk about complications often in this community, and I hope that’s because many people aren’t dealing with them. Discussions about “what could happen” are often left in those quotation marks, as if that holds the threat captive.
But after decades with type 1 diabetes, complications may happen. Retinopathy, kidney issues, depression … the list is long and a good attitude, a determined mind, and even good control don’t keep these issues entirely at bay. I’ve had my share of issues with my eyes. In the past, I’ve seen some cotton wool spots in my eyes. And during the course of my pregnancy, retinopathy near the macula dictated a c-section delivery for my daughter. And now, this diagnosis of macular edema in my right eye.
This doesn’t mean I’ve failed.
I am sharing this because it’s real life with diabetes. This is what’s happening, and even though I don’t want people thinking that diabetes complications are necessarily a guarantee, they also aren’t a mark of failure. I work hard to manage this disease. I will keep trying, even though I know there will me more radar blips, and more moments that cause momentary tears but then renewed determination. There’s so much personal responsibility, so many moments of, “Well, you have the tools to manage this disease, so why aren’t you hitting the mark?” Diabetes is unique, in that way, with complications often viewed as a result of the patient not working hard enough, when in fact, they are the result of diabetes.
By writing this, I’m opening myself up to people who want to point fingers and to say, “Well, it won’t be my kid” or “It won’t be me.” I can understand that. I didn’t think it would be me. I hope it’s not you. But it may be you, and in the event that it is, I want you to know that you aren’t alone. Diabetes complications need to be talked about, because the guilt that comes with their diagnosis can be crippling, melting away the value of our efforts. It’s easy to become overwhelmed when diabetes seems to be the leading cause of leading causes. For me, the diagnosis of macular edema made me want to wallow in self-pity for a while and hate diabetes, and I did that for a few days. I cried a little. I combed through internet search returns. I hugged my husband and my daughter, burying my face in the chaos of her pigtails and inhaling the scent of unconditional love (and baby shampoo). I called my mom. I talked with a few friends.
And then I moved on, because if I stay in that pool of guilt, I’ll drown.
Guilt is a misplaced emotion when it comes to diabetes, and to related complications. It’s not my fault that I have diabetes. It’s not my fault that I have eye complications. But it is my job to take care of these issues, and to work through the moments where I want to give up. The guilt gnaws but I can’t let it take too deep of a bite; I owe myself more than that. The emotional ebb and flow of diabetes has more impact on my happiness than the actual fluctuations of my blood sugars, so I won’t be beating myself up about this. But, as I write some of this, I’m alternating between hitting keys and wiping tears angrily off my face, which pisses me off because even when I make a conscious decision to block feeling bad and guilty about it, I’m still unnerved. I want to be tough, but I’m not as good at that as I’d like to be. I want to be strong for my family, but sometimes I need them to be strong for me, in the moments when I’m buckling a little. (Which is why I need to thank Scott, Melissa, Kelly, and Jeff for being sources of information and good hugs last week as I was finding my footing with this and away from home. My family isn’t limited to marriage or blood, and I’m thankful for that.)
So they checked the box, the one that says, “Complicated.” But I knew that, far before it was seen in my eyes. Life with diabetes is complicated. Life without it is pretty damn complicated, all on its own. But it’s mine, this life, and it’s still good. When I come to the end of the very last day, I want to feel happy. That’s more my goal than an A1C number ever was, or ever will be.
Life moves forward, complicated as it may be.
Copyright © 2013 Kerri Sparling & Six Until Me. 2005 - 2013 . All rights reserved.
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