As always, I used my JDRF Ride to Cure training ride today as time not just to get my legs and body ready for a 105 mile one day ride, but to noodle over things I have deep in my mind.
Today, I was thinking about what it might be like to be inside my daughter with diabetes’ head, and the head of anyone who is an adult dealing with T1D. Because even though I’ve been by her side in this journey for almost 15 years, I’ve no idea what it might be like to truly be her.
Sure, as she was growing up, I was really as much a part of her diabetes as she was. I often joke one of the reasons we are so close is I didn’t just raise her knowing her heart and mind, I raised her knowing what her organs were doing, sometimes on a minute-by-minute basis.
All that has changed now. She’s a young adult, and I’ve been working hard to disattach (is that word?) myself from her daily diabetes care. In some ways it feels like that clump of old necklaces at the bottom of your old jewelry box. You pick it up and work on it, squinting and focusing and twisting and turning this and that to break little parts free. You cannot just do it in a day. Sometimes it overwhelms you; other times you have breakthroughs. Lately, I feel like I’m almost done with the process. And that makes me nostalgic. I may never again know what goes on in her diabetes life.
But I suspect training for this ride, which I’m now into my fourth month of, might be giving me some hints. Here are some things in my training that I suspect may be teaching me some things about the life of the adult with T1D. (and I cannot wait to hear if I am right, wrong or somewhere in between. So do share!)
*The clothes (or the devices) do not make the person: (Did I sound like George Michael there?) When I first started riding, I noticed something: the other riders have some pretty cool (and sometimes pretty overbearing) outfits. I mean, man oh man, they dress to ride. To me, this made them better riders. The more words on a tight Lycra shirt, the better cyclist they must be. I felt all dowdy in my plain blue riding shirt (even if it did have the right pockets in the back). But in time, I noticed something: the stronger I got, the more I began passing the super-outfitted folks. I wonder if it’s the same for diabetes. Sure, there are folks who have all the coolest devices. But really, that does not mean you are the person most in a good place with your diabetes. I know pumpers (and CGMers who are struggling). I know MDI folks who are doing fantastic on their injection routines. I used to be a judger. If you weren’t pumping, you weren’t a true pro. But just like me in my unassuming shirt on my bike, the quiet user of less flashy technology is not necessarily losing the race. Right?
*Sometimes I just don’t want to do it. Training for a long ride like this means discipline. I must keep to my training schedule. I must clock the miles on my plan. But every once and a while, I just cannot do it. At first, I beat myself up about this, thinking things like “Oh great, now you are a day behind. You’ll never get back to where you want to be.” And then my mind would wander to, “What’s the point of trying now?” I can imagine a few missed bg checks or boluses must make a person with diabetes feel that way. But the reality I’m learning is this: If I lag a day, all I have to do is get back on the bike and start pedaling. I’m still moving forward and I’m still making progress. The lost day is in my past. Learning to forgive myself and hop back on the plan has been a wonderful challenge, and I have to wonder if it feels that way with daily diabetes care too.
*Nagging gets you nowhere. Strike that. Nagging sets you back. A few people in my life who I know really care about me have been kind of nagging me about the riding. They don’t see it that way. They see it as support. They see me and say “Did you ride today? Did you go far enough?” In my mind it translates to “I’m checking up on you so you don’t screw up!” and it feels, well, it feels horrible. I can tell you with certainty I’ve been doing this to my daughter for the better part of a decade. Sure, I mean it as supportive when I ask her if she’s checked enough or remembered her shot. But it just translates differently to the person hearing it. I’m still working on getting my loved ones to rephrase how they ask me (or stop from asking me), but I’m learning to do the same for my daughter. Man, she’s been right for so long: even if you don’t think it’s nagging, it is. And it gets you no where.
*Sometimes you just need a little help. I just learned about this thing called “pacelining.” Pacelining is used for distance rides. Riders line up in a straight row and pedal away. In my laymen’s terms, it forms like a wind pull that helps you along. At different points, individual riders can take a short break from pedaling hard and use the energy of the group to keep going. No one can always be the one using it, but everyone can take a turn. With this, everyone gets there with more ease, more energy and with success. Ummmm … it’s that what diabetes camp does for kids? And what on line support does for all? It’s important to learn how to form such groups and how to function in the group. Another important part of pacelining is that if you are not able to stay in step or understand the right use, you need to drop out of the line because you could mess up a really good thing for everyone else. Sounds like good, solid diabetes support, doesn’t it?
*Some days are diamonds, some days are ughs: Okay, that’s not what Petty said but still. It’s amazing to me how I can prepare almost exactly the same way, head out on almost exactly the same ride and some days I cruise through it thinking “105 miles will be nothing!” and other days I watch the odometer and think “Really? That was only 16 miles? I’ll never make it.” Diabetes is like that, I’m quite sure. I know you can prepare with perfection and still stall some times. I’ve seen it. I know, too, that sometimes the road ahead of you seems endless and other times it seems like a breeze. My friend the Ironwoman champ told me this: “You have to prepare for the bad day, and by that I don’t mean to prepare to be bad. I mean, prepare to face that day and just keep on going no matter what.” Such great advice. I’m working on it slowly, and I’m making myself keep going when I just plain don’t want to. I imagine diabetes feels like that? Only you have no choice but to keep on going.
*People really, really care. I am not kidding when I say every time I get another donation for the ride in the mail I jump up and down and scream. Emails announcing new donations are my new addiction. Because every single one reminds me that people care. People want to help. People appreciate a way. Even folks we don’t know much do. I know a lot of people in my town don’t know me well but see me all over town on my bike and know I’m that crazy lady they read about in the paper. There are a few major hills in my town I’ve been working on doing without stopping. One really trips me up. And for some reason, this lovely woman I don’t know is always watering her plants when I go by. After a couple of times, she started cheering me on. The other day, I rocked the hill, making it to the top without a stop or a sway on the bike. As I crested the hill, panting and doing my “1,2,3,4,5 Scott Johnson!” Counts, I actually said out loud, “Good girl. Good for you.” I wanted some reinforcement, and figured I could only count on myself. And then, from behind me, where the plant watering lady’s house is, I heard a giant “WOOOOT!!” It was that woman. I think she was as excited as I was. It’s important to realize that even when you feel all alone, there are folks out there cheering you on. I hope all my friends in the diabetes world realize that.
In those ways and in so many more, this training, fundraising and working toward a cure with a new, ahem, vehicle, has been such a gift. I only hope I can use what I’m learning to be a better mother, friend and support person to the many I know who are battling diabetes 24/7. Hate diabetes. Appreciate the journey. (and PS: I secretly cannot wait to get my cool ride shirt with lots of words on it!)