Diabetes has made my body broken in ways I don’t readily admit, but I am sometimes forced to acknowledged. People talk about my daughter’s chances of developing the disease and they always give me what they think is a comforting comment – “At least it would be the devil you know,” – but that doesn’t ease my boxed-away fears and I usually end up saying, “Yeah,” through gritted teeth because I don’t know how to explain that this disease isn’t the devil I know. It’s the devil that I think I know, but it still tricks me and the road takes unexpected turns.
Last night, before bed, I kissed my husband goodnight and tested my blood sugar. The second-to-last thought I had before bed was how thankful I was to hug my daughter and my mother on Mother’s Day. The last thought I had filled a fleeting blink of a moment – “I hope I wake up in the morning.”
Diabetes isn’t just in my pancreas. Or on my lab work printout that gets mailed alongside my electric bill and the leaflet about lawn service.
Diabetes gets right into my head, into my mind, and frays the edges of my emotional health. I feel happy and healthy the majority of the time, but diabetes does play a huge role in the moments that make me feel vulnerable.
It’s not a “set it and forget it” disease. It touches every moment of every day. It impacts decisions I made decades ago, and I worry about its influence on my health decades from now. Even something as simple as lunch isn’t “just lunch.” The food on my plate looks more like a paint-by-number set than actual food. It’s not a hamburger and fries – it’s 90 grams of carbs that I need to calculate insulin for.
To be honest, this Diabetes Blog Week topic makes me uncomfortable. Not because it’s bad, but because it’s hard. It makes rational thoughts tumble down the rabbit hole until I’m in so deep that I’m grasping at roots to pull myself out. It’s hard to admit that, even though I don’t feel sick, I’m not entirely “fine.” It’s hard to talk about the parts of diabetes that make me feel sad or depressed because that’s truly not how I feel the majority of the time.
But I have felt long jags of it. Long periods of emotional confusion where, whether I’d care to admit it or not, the root cause was diabetes. Even though I don’t want to be defined by this disease, it does explain some of my sadness.
“I wish I had a more gracious outlook on my experiences with diabetes, but I don’t. I wish I felt that it was some kind of blessing, but to me, it isn’t. It’s a thorn in my side that digs in deeper with every passing anniversary, but fuck you, diabetes. I’m tired at times, but I’m not stopping. I’m afraid, but I’m still going. Diabetes has brought me to some of the edges of life, daring me to look into the abyss and wonder just how long I’d know I was falling before I hit the ground, but there’s power in that. I’m living with diabetes, with all the accompanying ugliness and arrogance, power and determination, all the perspective and perseverance and bitterness, all the fear and fearlessness that comes with any life, but is micro-scoped and magnified by a disease that never, ever takes a breath and doesn’t leave my world until I do.”
Perspective is a funny thing, though. Sometimes people with diabetes don’t give themselves enough credit for achieving the baseline that others may take for granted. Knowing I live with a disease that has aggressive moments and many bodies in its wake, the bad days can be really bad. But the good days are magnified, and magnificent. I don’t know what it’s like to be pregnant and not have diabetes, but I do know that the moment I gave birth to my most treasured Bird, the joy was indescribable because I felt like I had defied odds en route to motherhood. Small victories fill my soul because I know they are the result of my hard work.
This is damn hard work, with the reward for a “job well done” being the opportunity to do it all again tomorrow. On some days, this relentless cycle can bring me down. But it doesn’t take much to fill me back up.
And I am grateful for a body that, despite not making insulin, still knows how to make joy.
Yeah you know I am worried about high’s and Sheryl is worried about lows. The difference is informed by the fact that I have been low and came back so I am not worried. On the other hand Sheryl has never been high. Yep i knwo how it sounds, both meanings are true.
I am new reading your blog, I have been battling for 10 years as I was diagnosed T1D after I had my first child. I too feel the fear of my children being diagnosed one day. I understand you completely when you say sometimes your last thought is will I wake up in the morning? I am like you and it does not take much to fill me with joy. I have always been that way I look for the up side of everything, but this- this, it wears you down. Some days, like you I am exhausted but I do not waiver, I continue the battle because in my mind I will try my best to win the war. I too have not experienced a pregnancy without being diabetic. The first I was gestational, after having her I was officially diagnosed T1D. Carrying the second who was born perfect without a sign that his mother was battling daily to keep us both healthy was a victory. I felt I won that battle. Yes, it was work but I had my healthy baby boy to show for it. In the back of my mind I knew the daily battles would continue but at least I had a solid win under my belt. Thank you for writing about your journey it is extremely helpful to know others have similar experiences. So hard to explain to those who do not understand that on top of your normal responsibilities of being a wife a parent and working ( I guess I described being and adult lol) that every day, every minute of your day is calculated with what you are eating how much insulin you are needing. Not letting yourself go low because you worry about passing out at work or at home when you are the only adult there with the kids. The list is endless, the bad scenarios that play out in your mind are endless and you try your best to avoid these every day. But you know this and you understand, you live the life. Thank you again for writing and sharing and yes, fuck you diabetes!