By Monica Storozyszyn
Note from the director: This month’s spotlight was written this past November and posted to a blog. It was recently shared with me and I would now like to share it with all of you. ~ KBW
For many, November has been requisitioned to serve as the keeper of a memory. It has become that Polaris that signifies the beginning of a campaign to bring about some sort of awareness, end some sort of misery, or celebrate some sort of national event. When I think about all the holidays I’ve “created” over the years (Preston Brooks Day, John E Potter Day) I realize I can’t roll my eyes at the fact that National Pork Month is an actual thing, or that it probably means something to someone.
Then, I realize that National Fireworks Safety Month probably means as much to someone as Diabetes Awareness Month does to me. While that’s okay, I’m going to do what I can with this blog post to make sure you’re more attached to diabetes awareness than fireworks safety. It’s my prerogative.
I was twelve (16 years ago) when I was diagnosed with type 1 diabetes. Before my diagnosis, I remember being so tired and I remember not knowing why. I remember mood swings and blurred vision and a small bladder. I remember falling down in the hall and not being able to get up. I remember not wanting to get up. I remember my mother’s worry as she drove me to the doctor.
When I was in the hospital after my diagnosis, I remember hating catheters and I remember fear. I remember Kim Boaz Wilson, with her syringe, orange, and words of comfort. I remember letters from my classmates and visits from my family – which had swelled to include its unofficial members. I remember deciding I would give my own injections after my father’s slow and deliberate attempts and my mother’s swift and deliberate ones.
I remember my first summer at camp – being frightened by what a camp that consisted solely of chronically ill children might look like. That first summer at camp will remain the tipping point in my life: it was the moment fear and worry dissolved and solidarity and joy took their place.
Since that first summer, I’ve never been alone with this burden. Since then, I’ve never been without a community that not only gets it but also helps me laugh at it when necessary. To be clear, my family and friends without diabetes have never treated me differently – they’ve never limited me with their ideas of what diabetes does to a person – and they do such a good job pretending they’ve forgotten that diabetes is an ever-present force to be reckoned with in my life (they also don’t give me too much grief when, during word association games, I respond to “happy” with “diabetes camp!”)
But without the family I created at camp, some of whom I communicate with a scant seven days a year – I’d be lost. And I can’t explain it. I’ve always felt that when I was diagnosed, I became an adult. At twelve, I ultimately became responsible for my life in a way that no child should really ever have to be – I was in control of its quality and its length. No more carefree sleepovers where apples dipped in Kool-aid crystals were consumed without thought. Eating a banana or drinking a glass of milk, from that point on, became calculated efforts.
I write this not to narrate a tragic tale of woe, but to paint a picture of how empowering it was to be surrounded by kids who were just like me. Somehow, in that environment, I was able to be carefree. I was able to see super normal looking kids, who weren’t normal at all, swim and shoot and run and laugh and discern that my life could still be outstanding despite this wretched yoke I could never shrug off of my shoulders.
So, you can imagine how fiercely protective of these people I am. I would do anything for them, as they would for me, even if that simply means writing text messages back and forth so we can vent and move on with someone who understands how trying dealing with diabetes can be at times. I’m lucky to have these people in my life. Without them, I’d probably look like one of those soulless people with dead eyes whose hair looks dirty even though they wash it regularly – but I’d still be around, plodding forward.
I’m grateful for something much broader in scope – science. Before I left for Ukraine (where I went for a Peace Corps assignment), I read The Discovery of Insulin. Never have I appreciated the work that was done to create the very thing that saves my life every day. This is not meant to be a flippant remark: I will always have a soft spot in my heart for Beagles and Toronto, and the ghosts of those children begging to be injected by this crude substance back in 1922 will forever haunt me. It wasn’t until I read this book, and received the following note from a friend, that I truly appreciated the way our bodies work and that a circle of brilliant scientists figured out a way to trick my body into functioning so that I might live.
The note? My very good friend Blaine (sidebar: we met at camp; her brother has T1D) started medical school not too long ago, and sent me this in an e-mail:
“We have been learning about metabolism, with Insulin and Glucagon being main control centers for pretty much everything your body does. I would like to extend to you my absolute appreciation for what you and all those other PWD’s [people with diabetes] out there do every day. The complexity that makes up the insulin regulation and metabolic system is AMAZING and I am so thankful that you have taken on this huge responsibility. You guys are awesome. Seriously. I sit in class and listen to all the things that can go wrong, all the things that are affected by changes, all the pathways and energy suppliers that wait for that little insulin signal, and all the problems people have when they choose not to be compliant with their treatment…you PWD’s seriously amaze me.”
This has been long. It has been sentimental and flowery, but I am sentimental and flowery – I like writing that I love you; that it will all work out in the end. I like making odd word choices and writing as if I were the author of a string of B-list novels. If you’re reading this, you probably love me, or at the very least, you like that I’m one of the humans you’ve encountered in life thus far. That being said, you probably don’t mind that the previously mentioned are true, or at the very least, you won’t say anything if you do.
My proposal this November? Spend some time mulling over all that makes you lucky and grateful.