A Letter to My Chronically Ill Body

Dear broken body, you always find a way to send a reminder that you are still there. You remind me of what constant pain feels like. You reveal to me how a fish must feel out of water. You remind me that my intestines aren’t perfect. You show me what three A.M. looks like. You remind me that I only have half a heart. And, you remind me that no matter what, you are working hard to stay alive. I know it can’t be easy working with what you have, but there is no way around that. I feed you pills and treatments just to keep moving forward. I know it’s not easy on you, and it’s certainly not easy for me. Body, you frustrate me at times, like when all is well and then suddenly, things fall apart. You wait for the worst possible moment to crash and burn. And I’m left going through the rubble. Dear forever ill body, you completely confuse my doctors; it can be funny at times, but mostly it creates problems. There are days I wake up feeling great and then you get bored. There are so many days of canceling with friends and family because you can’t get it together. Dear body, you don’t get to have me all to yourself, you know. Sleepless nights are a way of life now. I guess since you don’t get a night off, I don’t either; I’m just glad we have good music to keep us company at three A.M. Dear struggling body, I know things have been hard, especially for you, my dear lungs. I know humidity is your enemy. I know its not your intention to starve me of breath. Yet, I point my finger at you and yell for you to work. Body, there are days you make me feel so dizzy, days you make my oxygen level drop in a blink of an eye. This makes me feel completely tired and unable to function like a normal person. And, on days where you feel so heavy and it seems like I’m pulling strings to make you expand, I want to scream. But you did a miracle today and everyday; you took in air, you took a deep breathe, inhaling and then letting out that breath. Body, you never quit, no matter how tiring it is to breathe. Thank you; thank you for breathing for my damaged body, I know that you need a little extra support and that’s okay. I will carry Zanna (name I gave to my oxygen) around as long as you need her. Besides, you two have bonded quite well; I would never take away your best friend. And I know my body is different, especially you, dear heart. You have been fighting since before I was born. Those crazy surgeons messed with your plumbing at least 5 times before you were even 5 years old, not cool. Heart, I know you do crazy things like beat too fast when I’ve had too much caffeine. When I get really hot or sick, you decide to be made known. Sometimes you just get bored and become a drama queen; this can especially ruin my day. I know you don’t mean to go haywire, body. I know you are fighting hard in there, half a heart and all. I’m glad you don’t give up easily, because neither do I. I want to thank you for continuously pumping blood and oxygen through my system. Despite the Fontan procedure and a stent, you continue to work. You may have a little different plumbing, but that’s okay. Honestly, normal is overrated. You are definitely the coolest heart ever and I am so proud of the awesome scars I have because of you. My dear chronically ill body, God didn’t make you this way on purpose - it just happened. But it’s what I do with my circumstances that counts. I appreciate you being different, because while it’s not easy by any means, we have the coolest stories. Because of you, I started Kindergarten with a scar that made everybody jealous. To my heart, I may only have half of you but you are overflowing with love from and for so many people. To my lungs, you may need Zanna for extra support, but you have an awesome Instagram account. Chronically ill body, thank you for every good day you give me, thank you for using bad days to tell me you need rest, and thank you for just another moment. I will not let you rule my life, but I promise that if you need me, I will give you the attention you deserve. I promise not to let you get worse if I can help it. Body, if it wasn’t for you and the grace of God, I wouldn’t be here. I know I’m not fighting alone; you are fighting just as hard with me. Hurting body, thank you for never giving up on me. God has given us a journey that may be crazy, but it’s truly blessed. I pray that God continues to help you breathe life into me, because we have so much life left to live.