Improvised explosive devices (IEDs) forever-altered modern warfare. IEDs brought other abbreviated terms to the forefront of our vocabulary: traumatic brain injuries (TBIs) resulting in loss of consciousness (LOC), post traumatic stress disorder (PTSD), motor vehicle accidents (MVAs). Amputations. Multiple casualties incurred.
One inadvertently wrong step can trigger a deadly IED blast. Imagine the weight one carries if you so happened to own that misdirected foot.
While living with type 1 diabetes (T1D) is in no way equivalent to active duty in a combat zone, sometimes T1D feels like its own type of minefield. Bravery becomes the keyword.
It has, undoubtedly, been a trying time in my life. If you’ve stuck around to bear witness to some of it on Twitter, thank you. I know it hasn’t been easy, but I promise you it has been real.
My blood sugars have suffered the consequences of life’s chaos. I feel like I am back in the high school days in which I injected insulin and hoped for the best, which was often simply surviving the day.
I am confident that with access to proper, multifaceted healthcare treatment, I will see positive effects on my health. Yet, so much of that is to be determined by third parties and real life responsibilities dictating the courses of treatment. And in the meantime, there is a human being who never gets to take a day off from living this and feeling this. She puts in 110% effort, but, the results do not always translate.
Scientifically-speaking, the odds didn’t look to be in my favor for my recent 2018 tour-de-New-Year-healthcare-appointments.
And yet, after lots of prayers:
“Your eyes look great. How’s everything else going?”
“You know how it goes. It’s been tough, but I’m trying to improve.”
“That’s what matters- trying to improve even when things are tough.”
“Has anything ever made you fundamentally change your mind? I mean no disrespect by that question, and it does not have to be a medical example. But, what moves you? The data we can see on this paper? Emotion? Find that answer and use it here.”
That is the first time I can ever recall a healthcare provider (HCP) directly asking what I care about. (Guinea pigs, for the record.) Similarly, I’ve occasionally placed down my armor and been vulnerable in order to have these open conversations.
We went on to discuss CBT (cognitive behavioral therapy) in managing physical health conditions. So often we see CBT as a mental health treatment option, but those skills can apply to anything and everything in life. Diabetes is no different. Because the HCP inquired as to what was important to me, we were able to construct a realistic, workable plan to move forward.
My A1c pinged in at 0.1 below the stratosphere level that I was dreading it may be in. Physically, the 0.1 difference between an A1c of X.9 or Y is negligible. But mentally, it is huge. In this case, it becomes motivation rather than deflation. And yet, it shouldn’t be that way. I know that rationally such numbers are a compass guiding us home. ‘Stratosphere level’ in my personal diabetes vocabulary relates to that overall crappy feeling, rather than a place of harsh critique. Yet those numbers so frequently get thrown around in the healthcare blame game, and often times we can be our own biggest bullies.
After 27 years of living with type 1 diabetes, my main takeaway is that T1D is a total crapshoot. We don’t always want to believe that. There is the fable of “control” over the often uncontrollable. There is an uneasiness in sitting with the harsh reality that a disease may decide to do what it wants, when it wants. So, we construct narratives to counter that. Maybe we should focus more on living rather than surviving situations yet to be determined, though.
We overemphasize what the human being should and shouldn’t do along the way so that if and when the scary stuff happens, our blame game trigger-fingers have a target. That target is a person who tried his or her hardest, even on days when it feels like more would’ve, could’ve, should’ve been done. Showing up is trying. Keep showing up.
Now, don’t get me wrong. I want us all to hang our hats on hope and to try our best- whether we find it in daydreams of a cure or we figure out a decent way to eat low carb or what have you. Diabetes may very well be a manageable condition for some. But we are doing a disservice to all people with diabetes (The Whole) if we do not acknowledge that “some” is not “all.” There are psychosocial, socioeconomic, environmental, genetic lottery, healthcare access, and so many other factors at play in determining the ultimate course of an individual’s diabetes. Diabetes manifests across an illogical spectrum.
I dodged bullets recently. I got second chances. I feel a legitimate level of survivor’s guilt, like my own foot easily could’ve tripped the diabetes IED line but I Cupid-shuffled to the left just in time.
There are people out there with lower A1cs than mine who also try just as hard as me. I will never judge anyone for their diabetes. You could tell me you chug 2-Liter Coke bottles on the regular, and I would still say there’s likely psychological pain hidden behind that coping mechanism. I will support you in your healing. Simply by showing up and having shown up over time, you are already at 110% effort status. You do you.
Genetics may play a role in others’ numbers compared to mine, for example. Yet those same genetic factors may also be why they hypothetically develop complications despite tight A1c’s, and the person dodging bullets does not at this point.
Hitting “publish” on this blog feels like one big jinx. Will diabetes and its potential havoc-wreaking always be this way for me? Only God knows that answer. There will likely be more times of evading danger, and other times where diabetes strikes out of nowhere. I will deal with those times as they come.
The benefits outweigh the risks in publishing this blog. Once we start being more honest about diabetes being a JerkFace, we can stop seeing ourselves as diabetes management JerkFaces-In-Chief. How I wish someone had told me that in high school. Or even if my recent A1c had hypothetically been Y instead of X.9. You tried, Current Ally or High School Ally. It wasn’t pretty, but you showed up anyway.
The bottom line of our focus should be on the ultimate abbreviation- quality of life (QoL). The HCP was spot on in her questions: What motivates you? What will drive the changes that you want to see?. If we can answer honestly, if we soul-search and find our why’s for continuing to show up and try, well, I’d say that’s a worthy battle no matter the outcomes.
One thought on “On Survivor’s Guilt and Showing Up Anyway”
Ally, I do not deserve the many, many chances I have been given. I refused to see a doctor (any kind of doctor) for almost 20 years. My A1C was once over 12, probably higher, and i refused to do anything about it. Yet, here I sit in reasonable good health. So what is the message? We need to be thankful for what we have, and work hard to make things better for our community. After all what choice do we have? Not much really.