In two days, I am going away for a long weekend to Las Vegas with my girlfriends. Truthfully, I have already been thinking: “Diabetes, you are not invited. If you show up as the sloppy, needy bitch you tend to be when I’m on vacation, I’m going to be so pissed.” But then I remember that I don’t have that luxury, and that whether I like it or not, the power trio of my infusion sets, reserviors, and test strips are comin’ along for the ride.
When I travel, I either over compensate by a hilarious amount, or drastically under-prepare. Whether it’s a quick trip home to my parents’ house, or to another country for two weeks, there is just no way to be perfectly prepped and ready for what could happen when I’m traveling. Unless I hire my own personal psychic, the travel gamble is just another day in the life of a type 1 diabetic.
Tonight, as I was going through my pre-flight inventory check. I learned about the article in the New York Times that was published yesterday called “Midnight three & six.” This video/op-ed piece highlights 24 hours in the life of a 15-year-old diabetic, who is still largely cared for by her parents. In the video, her mom lays out on the counter what, to me, was a very familiar pile of boxes, syringes, alcohol swabs, needles, and drugs that smell like paint (I’m serious, have you ever smelled insulin?!). The mom diligently explains what the mountain of diabetes supplies is, and that all of it is what’s used to keep her teenage daughter alive. Grace, her daughter, leans against the kitchen counter passively, distant, exhausted, you know, being a normal 15-year-old. Her mom asks her what’s up. Grace looks at the heap of stuff and says, “Sorry, I’m trying to act interested.” She sarcastically points to the box of infusion sets next to her. “WOOOOO look at all of this!” And in that moment, my heart sank, and I thought: “Holy shit, girl, I feel you.”
I had just done this routine of dumping out hundreds, maybe even a thousand dollars worth of odds and ends on to my gross shag rug to do my “pre travel inventory check-in.” The method to my madness is simple. Check on my stash every now and then, and re-order when I start playing with fire as my quantities start to dwindle. I have, admittedly, no concrete system to ensure that I’m 100% armed and ready for natural disaster, traveling around the world, or even being locked out of my apartment. I wing it. I mean, I’m responsible about it, but I don’t keep inventory on lock down. I’d be a terrible retail professional.
But back to the NYT article for a sec. It’s not really about the heap of boxes and needles, is it? It’s about what all of that “stuff” symbolizes for us. Or, to take it one step further…what, over time, we allow this stuff to symbolize for us. For some, it is crippling. It makes us feel tethered and claustrophobic. Like we are chained to our pump and it is a torture device keeping us from our freedom. Others see it and think, “we are so fortunate to have the technology and development of care that allows us to live our lives just as we wish if we follow our care routine just so.” I find myself swinging back and forth across a spectrum. Some days I want to throw my pump across the room and run away as fast as I can. Others, I find myself worshiping its existence the same way I worship pineapple pizza, my faux fur blanket, or my New England Patriots pom pom hat.
Grace is a beautiful young girl is in her prime teenage years. She can’t feel lows, her opinion of her disease is ever changing, her body is developing and growing, and therefore her diabetes is very dangerous. She even has a dog named Jackie that tells her when she needs to test her blood sugar (um hello, I need one). Her mom and dad take turns waking up through the night to test her blood sugar at midnight, 3, and 6am. This is something I did when I was first diagnosed at age 17, for about 6….days. It was simply not something I could sustain. But then again, I could go more than 4 hours without something life threatening happening to me. For this, I am insanely grateful. I have been given a much more forgiving diagnosis. I can push it to the limits most of the time. But this one girl’s story was a sobering reminder of how unpredictable and serious this disease truly can be.
I’m not sure how I felt about the story of Grace and her parents. It left me feeling…scared. There was a very sad undertone. And personally, I struggle with scare tactics since they’re typically unnecessary and the media’s fault. But this one was raw. This one was a mother sharing her honest fear of sleeping through one alarm and having it cost her her daughter’s life. That’s a big deal.
We so often portray our-diabetes selves participating in JDRF walks, or being “resilient” and conquering lows like a boss. But this unique depiction of the uncertainty and exhausting effort that goes in to each and every day was so honest. There are so many questions, so many what-ifs, so many, “how much longer can I put up with this?” And all of that…is…well…bleak.
It’s easier for me, personally, to joke about things. Because of my 20-something ways, that’s where my mind lives, a humorous place. Maybe because I’m unwilling or unable to accept the potential permanence or misery of this situation. Also, I am lucky to know my body very, very well. I can feel lows like, 3 days before they hit me.
Like I said at first, I’ll be some pissed if bad lows, and crap infusion sites follow me to Vegas where I just want to be left alone to play with my friends. There’s absolutely nothing in the rule book that says I can’t do that, or at least try to do that, but I suppose the moral of the story is just to be prepared. There’s simply no harm in having those 9 extra infusion sets, and 3 extra tubes of test strips. It’s almost as if over-compensating for an emergency will make the diabetes more invisible once I am there. Better safe than sorry is no joke in the diabetes world.
At the end of the day, the 5% of us diabetics living with type 1 have been handed a seriously unique hand of cards. Every single one of us has a different experience. Some of us are very independent, some of us are on crazy diets, some of us are in shape, and many of us are afraid to even leave the house in the morning. Regardless, listening to and showing compassion towards the other diabetics we meet or hear stories about as we go about our merry ways, is one of the best ways to keep an honest perspective when doing something as simple as “taking inventory” on our tiny, bedroom floors.