15 years is a long time to live with Type 1 diabetes. Early in my diagnosis, people would ask me if I was “used” to having diabetes yet. The question was a general nicety that people didn’t really think into, but the question never really sat right with me.
How could I ever be “used” to something that took a part of who I am? The rage, the sadness, the loneliness—that is what I felt left with once I woke up and found out that I had type 1 diabetes. I felt like my diagnosis stole my life. It had taken from me something that was rightfully mine. After I came home from the hospital, I would lie awake and cry into my pillow, night after night, for a long time. I missed how life used to be, painfully. I missed going through a drive-thru and ordering a meal and eating it without thinking. I missed not having to have a snack on me at all times just in case my blood sugar went dangerously low. I missed the simple things, like swimming in a lake or hiking and not wondering or worrying about what my blood sugar was doing. I missed not fearing if I would go low mid-activity and have to either act like I wasn’t or stop what I was doing to let my body readjust.
I didn’t get to be carefree anymore—not like that. To think that I would never be that girl I used to be again was so very difficult for me. As I learned the new intricacies of keeping myself alive—and there were many—I was also mourning a loss that has always been deeply painful and hard to describe. It always felt like at 17 my world stopped and I went through a death of self, my life veering off in a direction that was never meant for me.
Now that I’m 15 years in, I’ve embraced the journey, and even come to appreciate the path that diabetes has shown me. My life as I knew it at 17 ceased to exist. I changed out of necessity and became someone new. I went through hardships with affording my illness that left me with fears and painful memories I’ll reconcile with my entire life. But, I also found my purpose in discovering how deeply passionate I am about health equity. It’s painful and it’s bittersweet to think about what finding that passion cost. The fact that I I couldn’t be who I am today without the hardest and most painful experiences in my life feels silly and senseless sometimes. If given the choice, I’d probably still take the simpler version of my life. The one where diabetes never happened to me. I never asked for all this. But I do embrace it nevertheless and have gratitude.
Still though, in the quiet moments, I think of that question still and laugh. Are you used to it?
I can’t ever be used to it. Always wondering what my blood sugar is in the back of my mind. Watching my sugar when I eat, I drink, I exercise. Recovering from a particularly bad low. Worrying about my eyes and my feet and my kidneys and what this disease could do to my body. Living in a body that never gets well. Feeling like my body—my safe place, the only place I’ve ever known—is a stranger to me. Betrayed me, even. Sometimes it feels like my body is really just my illness’s body and I get to inhabit whatever little space it makes for me in it. I have carved my own place in that space, but more times than not, it still feels that way.
I always like to put a positive spin on things, and there is immense beauty in my life and I have so much gratitude that I can even live the life I do with an illness that used to be a death sentence before insulin.
But I also don’t feel obligated to always put a positive spin on it. Chronic illness is complicated, painful, and it makes you hate your body sometimes. Relying on medication to keep you alive because your body can’t do it on its own is uniquely humbling and leaves you always with a small worry in the back of your mind of “what if” I ever can’t access that? It strips away at least a small sense of your self and feeling of autonomy no matter how empowering thriving in spite of your illness can feel sometimes. Part of you is always waiting for the other shoe to drop, wondering what else this illness will someday take from you.
It means living with a constantly evolving array of feelings, living in this strange body of mine. So, 15 years in, and I’m still not used to it. I don’t think I’ll ever truly be.
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