LETTER TO MY ILLNESS

Well I don’t know what to call you. I could call you “Chronic Kidney Disease, CKD, Renal Disease” but that’s just your first name. I’m still trying to find out what your last name is and how many middle names you have. My kidneys weren’t enough for you, so you’ve taken up residence in other parts of my body as well. You don’t have an official name yet.

But name or no name, the struggle is the same. You make every day a challenge, and you make being alive more complicated than it should be. I cannot sleep, I have RLS and I twitch all of the time, and so much more because of you, So I need to undergo a treatment called hemodialysis. Essentially, I have all my blood sucked from my body, sent through a filter, and all put back into my body in 4 short hours three time a week, lacking me many necessary minerals my body needs to thrive. My bones are brittle, my joints ache, I have bad headaches, my skin itches and I am nauseated all the time. I take medications to help my body do the things it’s lost the ability to do on its own since you showed up.

There are so many things I hate about you. I hate that you make me doubt myself and doubt my instincts. I hate that nothing in my life can be spontaneous. I hate that I can’t just have fun without paying you for it. And I hate that no matter how hard I try, no matter how carefully I track you and no matter how conscientious I am, you still surprise me, exhaust me and leave me confused on a daily basis. Thanks to you I spend more time with my doctors than I do with my family. And thanks to you I watch my peers move on without me and achieve the same goals I’ve had to set aside.

I kind of hate what you’ve done to my family. I hate the stress, the worry and the helplessness they feel. You haven’t just taken away my freedom; you’ve taken away some of theirs, too. But on the other hand, what you’ve done to my family is kind of beautiful. You’ve strengthened our connections, and you’ve given us a lot of opportunities to be there for each other when we’re most vulnerable, which is also when we’re most honest when the knots are tied the tightest. Throughout the past five years, I’ve never felt more discouraged, frustrated, tired, and lost, but I’ve also never felt more loved. I know that’s because of you. You’ve caused me a lot of hurt. I grieve my old, normal all the time. I grieve me who was always on the go.

My new normal is different. The new me is quieter but wiser. More tired but more patient. The new me is better at giving others the benefit of the doubt and has a better awareness of the fact that everyone is going through something. He’s slower to judge and quicker to empathize. He knows how to ask for help, and he keeps going no matter what. And you know what? I like him, too. I miss the old me, and that hurts, but I like the new me, and that heals.

So how can that be? It doesn’t make sense that you can hurt me and help me, that I can hate you and appreciate you. There are more challenges in my life now, but there is also more joy. You’ve taken a lot from me, but you’ve made me more grateful. How is that possible? It’s possible because of what you’ve shown me: that there are two sides to every story. There are triumphs in every hardship and success in every failure. There is good in everyone and everything, just as there is bad, too.

The thing is — I get to choose what I see. And if I look for the good, I know I will find it

You taught me that.