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When Chronic Illness Makes You Unsure of Who You Are

My significant other and I met at band camp when we were tweens. Yes, band camp. (Go ahead, soak that in, and¬†say your peace. We’ve heard it all.) It was a time in our lives¬†when our days revolved around percussion instruments, all-you-can-eat salad bars, and embroidered, powder blue¬†polo shirts. Life was simple for many reasons, but particularly because I wasn’t sick yet. I had never had a brain-busting migraine, had never¬†experienced temporary facial paralysis, and I¬†had¬†no conception of what it would be like to live with an invisible disability. Little did I know, in just three years, my entire world would wring itself out like a perennially wet sponge.

When I was young, I spent my days¬†dreaming of what it’d be like to¬†grow up. Perhaps you did, too.¬†The “golden” years that would be chock full of¬†freedom, fun, security, and full-blown confidence in who I was — as if the act of aging dips a person like a soft-serve ice cream cone into the multicolored sprinkles of stability. Magic! As if¬†simply getting older solidifies what you stand for, what makes you sparkle, or what makes your knees buckle. Because when I became an¬†adult… I’d¬†never change, I thought. I would look in the mirror every single day and know who I was, I hoped.

But here is what we aren’t taught — growing up is exponentially more difficult than it seems. With more years, comes more responsibility and stress and mood-shattering decisions.¬†And that¬†when life takes an insurmountably challenging detour and¬†you are diagnosed with a chronic illness¬†that cannot be cured (let alone managed), that¬†even as you age, you can actually lose the ability to stand strong in who you are day in and day out. In fact, I’d dare to say that I am more confused about who I am now than I was 10 years ago. I learn a little more every day.

But let’s go back to band camp. If my partner and I wouldn’t have treasured the tip-tap of snare drums, we wouldn’t have been in the same place at the same time. That summer changed the entire course of our¬†life ‚ÄĒ it led to friendship and dating and break-ups and silence and¬†spontaneous rekindling and big, bold¬†love, all layered and weighted by the complexities of life and illness and family and heartache and loss.

Our little nothing led to a little something which spilled into a big everything. It led to us.

The same framework¬†can be applied to how I get sick in the first place. What was once a singular symptom (ear infection)¬†led to a devastating emergency surgery (ear/skull/brain)¬†which would ultimately change the course of my life (daily migraines for 15 years + zero vestibular function). But without it, I wouldn’t have the big messy¬†everything of a¬†life that is entirely mine. Without that trauma,¬†I wouldn’t have pushed myself to be “normal,” I wouldn’t have tested my limits, and I wouldn’t have ever developed a true grasp and understanding of what it means to show and practice¬†empathy. I wouldn’t have realized that how you feel physically doesn’t define who you are mentally or emotionally. I wouldn’t have learned that at the core of your living, it is always OK not to be OK.

I still struggle every day. On my good days, I try my best to be compassionate and thoughtful.¬†I tend to root for the people who don’t ask for it. And I like to believe that everyone is capable and made of goodness until they prove otherwise.¬†But thanks to Michigan’s can’t-make-up-its-damn-mind in regards to summer weather, which drastically throws my¬†disability¬†and¬†chronic pain¬†for a loop-de-loop, I have been¬†waking up a haggard shell of myself lately.¬†And for me, that doesn’t mean that I don’t recognize the fiber of my worth. Or that I am confused about what and who drives me to¬†get up in the morning. But for me, that means that chronic illness has turned me into a shape-shifter. On some days, it’s like I am meeting a new version of me (and spoiler alert: I am not always her biggest fan).

So to you, reader, I ask you this: what was your little nothing that led to a little something that catapulted into a big everything? I’d love to hear your story, too. I’d love to be your biggest fan. Because let’s face it, growing up can royally suck, and we could all use a little more love in our corners.

Getty photo by Victor_Tongdee