DiabetesMine had a post today that has me sitting at work, kind of weepy, kind of mind-blown, and thinking a lot about my relationships with people past and present, and what it might be like to one day have a kid with T1.
It’s like I go to bed at night and I say, "Tomorrow morning I’m going to wake up and start new and do what I am supposed to do. I’m going to check regularly and take my insulin. I’m going to bolus every time I eat. And starting tomorrow, it will be fine." But then I wake up and I just cannot do it, Mom. Does that make any sense?
I would be a millionaire if I had a dollar for every time I said to myself "Tomorrow I'm going to start" - it's a phrase I use all. the. time. and there are a lot of things that can follow it. Logging. Eating less carbs. BG testing more often. Carb testing, basal testing, making that endo appointment, exercising, rotating fingerstick sites, reading this or that book, sitting down with a dietician, not eating pizza or Chinese food for dinner....
Lauren's a teenager, and I'm sure a lot of people would think that rebelling against the D is just a natural teenage thing to do. Some kids dye their hair and go get piercings, and Lauren's just doing her version of that. But I'm an adult. I'm way past my teenage days, and I've been doing the D for 16 years. And I'm still rebelling.
No one asks for T1, clearly. The wheel of fate spins and foists a disease on you when you least expect it - suddenly, this permanent roommate (bossy, demanding, never ever quiet) becomes a part of your life and you need to learn how to live with it. It doesn't matter if you're a child or a college student or a teenager or an adult who thinks their life is all figured out and done with big changes. BAM. This becomes a single focus of your life (or the life of those T3s around you).
Note I said "a single focus" and not "the single focus" - I often picture myself as a half-moon cookie, split down the middle with half devoted to the D, half to the rest of my life. I'm sure many would disagree about that "single focus," but for me it is. Aside from the practical implications of needing health insurance, maintaining your supplies, going to the doctor, testing, bolusing/injecting, counting carbs, and all the other external obligations T1s have, there's the internal obligation that seems to get missed. Our disease is neverending. It's as constant as breathing, but you don't have to think about breathing - T1 is ever-present on an emotional and mental level. A T1 doesn't have a surge of adrenaline or a stressed-out day like other people. They stop and try to figure out if that surge of adrenaline is just that, or could that shakiness mean they're heading for a low. They feel stress and maybe thirst - normal things that pancreatically-functioning people feel every single day - and think about highs. Every twitch, every tingle, every meal, every everything can somehow come right back to the D. That can be exhausting, and the only outlet, the only reprieve from this onslaught, is that rebelling/freedom that Moira wrote about.
Lauren spoke before Congress about her struggles and the line of people waiting to talk to her afterwards stretched out seemingly forever. There were either kids who had done the same thing and not admitted it, parents who feared their children were doing the same, parents who wanted to figure out how to keep their kids from doing it, or kids saying “OMG. You totally told my tale.” Then I started to hint to D-world friends that all was not ducky in our house. A few brave souls reached out to me and told me — privately — that they, too, were struggling with their teen. Still, I sit here today a bit shamed as I write this.
There's a reason there was a line stretched out for forever, Moira. It's because Lauren's not alone. Everyone I've ever met struggles with this disease, and there is zero shame in admitting that you or your teen struggles. Everyone feels like they should be better, do better, work and work and work, and no one in the entire universe can be that strong every single day of their lives. (Not even Kris Freeman! And he's got some crazy-amazing A1Cs.)
While talking about your post with my husband, I said "It's a really fine line [you T3s] walk between sharing your energy with someone, to help them kind of move forward when they can't muster up their own to do so, and policing them." I thought about my own mom through the years and how she tried so hard to walk that line - from the whole family moving to diet Coke so we'd all be in it together to nervously reminding me I had to get my logs ready for the endo appointment (which I'd always end up writing down in the car on the way there....). And how my husband is working with me through a pump start and preparing for our own family, waiting for cues for when I need help and when I need him to step back and let me take care of myself - the mind-reading that's involved to know when I need him to help (B: "Let's just order coffee instead of dessert!") and when I need to draw on my own strength to power through.
I read a lot in the DOC - from Six Until Me and This Is Caleb... to 25 Units to Go and Diabetesaliciousness and a million blogs in between - and I follow that crew on Twitter as well. What I've found there is a crazy output of what I think of as "external fierceness," that little surge of outside energy to rely on when I need some help to stay on the wagon (or get back on when I slide off). It's the same kind of gumption I got from my mom eschewing regular soda and from B's excellent mind-reading skills. A font of people who, through cheerleading, sympathy, or an eye-roll of familiarity and a shout of "duck fiabetes," help me grab my bootstraps, take a deep breath, and keep on keepin' on.
Lauren sounds like a smart, tough cookie - as so many of us T1s are! - and I hope that, like me, she finds a bit of external fierceness to rely on when that urge to rebel for freedom is at its most irresistible. It sounds like she's got it in you, Moira, and I can only hope she susses out even more of it in the DOC.