The next few weeks flew by in a blaze of lucidity and simplicity. Papageno developed an alarmingly psychic habit of barking when my sugar started to fluctuate quickly. He would sit on my glucometer when I was high. He waited with me while I drank juice or took insulin, and even, on occasion, woke me up if I dropped in the middle of the night. He made it easy for me to have to stop my day to take care of my blood sugar by having it be his day, too.
I stopped being angry. Lightly, easily, my rage slid from my soul and crept to a more desperate alley. The sullen veil lifted, and I could see my life, and all the people in it, with my own, naked, eyes: without a filter, and without history. I watched Sam measure out portion sizes of popcorn for himself, not because he had to, but because I did, and he wanted us to have the same. I saw that Mom and Dad danced around me, not because they didn’t trust me to take care of myself, but because they didn’t know how to help me be happy with myself. They surveiled me through sad, broken, eyes that were just as helpless as mine used to be. I finally understood that I was responsible for my health, not just for myself, but also for the people who cared so much for me that they would break if I couldn’t be happy.
I realized that Kayl still came over to do homework with me, even though I hadn’t really been his friend for a long time. He would show up, put up with me being sulky, watch me prick my finger without flinching, and never criticized my numbers. He made sure to drink water just in case we only had a few juice boxes left and I happened to need them. When I started to talk to him about my blood sugars, he listened quietly for a bit (probably in shock that I was actually addressing the issue) and then chimed in with vintage-Kayl, spot on, questions and comments that made me laugh.
When Kayl came over to listen to me run my pieces for the next competition, he brought me a package of juice boxes instead of his typical gift of my favorite rosin. Instead of yelling that diabetes wasn’t a joke, I laughed and said,
“What are you going to do if I win? Give me a watermelon?”
Kayl muttered something about how that wasn’t very practical and then said,
“Do they let you stop to check your numbers in between pieces?”
“No. I mean…I don’t know. I’ve never tried.” I shrugged, and added, “It would make sense if they didn’t though, right? They want to hear me play. Why should they make allowances for me that others don’t have?”
“Because others don’t have diabetes? Because it’s not an allowance? Because it’s not a ‘play by the rules’ situation, it’s an awareness situation? Because they won’t lose the value of music forever if you take three minutes to check, and you won’t lose faith in yourself if they let you keep your sugars in line? It seems like an obvious win.” Kayl looked startled that so much had come out of him about the issue.
“I think anyone could argue that they’re going through something traumatic, though. I can’t let them give me second chances that other people don’t get.”
“It’s not a second chance, and it isn’t traumatic! You’re still you, playing. If you mess up the piece, it’s messed up. It’s not like you’re asking them to be ok with your mistakes because you have diabetes. You’re just telling them that in order for you to give them the very best that you have, you need to make sure your numbers are good. Or at least try.”
I couldn’t imagine prancing up to the judges and saying any of that, ever. So I just got my violin out and started tuning.
I thought about what Kayl said, though, as I warmed up. If I had to play while my sugars were off, then yes, obviously that would be annoying and bad. But I knew I’d never have perfect sugars all the time, and I also knew I’d never quit the violin, or music. So I had to let the bad sugar go; I had to do what I could, and not make it worse by being mad about my sugars. He was right; I was still me, playing. I could mess it up with perfect numbers or with bad numbers, but it was always going to be me playing, my music, my work.
I started my first piece without a hitch. About half way through, my sugars dropped. Speed dropped; the kind that makes you sweat and blink fast, and you almost convince yourself that no one would notice if you began moaning and retching while you fumbled through the rest of your piece. I thought about stopping, crying, and rage-inhaling a juice box. But instead, I kept going. I thought,
“It won’t be perfect, but I can do this.”
And so I did. I was annoyed by not feeling like I was in control; my vibrato was sometimes too fast and tight, I missed a shift, and I’m pretty sure I miscounted that one bar with the stupid, weird, rests. But I remembered what I loved about the piece, and pretended that the dizziness, sweating, and my inability to latch onto any idea or phrase for more than an incredibly fleeting moment, was just the way I was. I imagined that the way my sugars made me feel was a separate, distant, thing from the way I felt about the music, and clung to that idea till I finished.
When I was done, I lunged for a juice box and my glucometer. I was 32, the lowest I’d ever been. My hands were shaking and my hair was soaked with sweat. Kayl didn’t even notice me diving for my juice box; the second I’d finished the piece, he’d jumped up and run over to my music stand, saying,
“Wow, that’s a great piece! What is it? I haven’t heard you practice that before, is it new? Wow, Asa! I really liked that!”
Then he glanced at me, hunched on the couch, sucking on that juice box like it was made of friendship and love. He said,
“Whoa, you went low? Do you need more juice?”
I shook my head and focused on breathing. I felt bad that I’d let myself go so low. I knew I couldn’t risk doing that again, and it worried me that I would be in performances and situations where stopping wouldn’t be ok. I promised myself that I would make sure not to have active insulin in my system before playing, that my numbers would be in no way borderline before I started. I told myself that I would do what I could, that I would always attempt to be safe. I needed to believe that playing through a low blood sugar, even though I hadn’t played as well as I’d hoped, was still worth it. I wanted to know that even if diabetes danced on my will, I could still be me while it taunted in pointy stilettos and endless pirouettes.
Kayl sat next to me and watched my face crease in stress and worry. He said,
“You know, I didn’t know you were low. I just really liked it. You played like no one could take it away from you. It was good, Asa.”
Mom tried to tell me that in order for me to be happy, I had to do the work; I had to change. My anger and agony might not have been actual stains, but I had let them become penetrating forces that dictated all of my choices and behaviors. I’d tried to fix my anger by justifying it, by feeding it. Without Papageno, without music, my family, and my friends, I don’t know how I would have realized that the only way to heal a wounded soul is to love it, and never stop. I don’t know that I would have understood how some stains are cleaned, not with hard labor or relentless grit, but with soft opportunity and unhesitating acceptance.
I never got back to my chirpy bubble life. I got diagnosed with a disease that I didn’t cause, didn’t deserve, and didn’t want. But, I barely remember the flippant bliss from before my diagnosis because going through my first few years as a diabetic taught me more about what it is to be real than any of the contentment or pleasure I’d felt prior to that time. Diabetes taught (and still teaches) me how to love, how to live. I cannot express in a single thought, song, or gift, the complete gratitude and appreciation I have for the loved ones in my life who helped me get there.