My illness doesn’t own me.
Eight. It took eight different specialists to finalize the diagnosis of complex regional pain syndrome (formally known as reflex sympathetic dystrophy). My heart dropped when I heard that this isn’t going to go away anytime soon. At 15, getting diagnosed with the most painful condition known to man? This isn’t real. Ever since that day, life hasn’t been the same. I wake up in excruciating pain, go throughout my day with no relief, and attempt to sleep while not being able to focus on anything but the pain. As I walk past you on campus, you would never suspect a thing. I smile and act as though my life is just like yours —relatively pain-free. This is the furthest thing from the truth.
I crave being admitted to the hospital due to the fact that in the past four years, that is the only time I have been pain-free. It’s a weird concept, ya know? At the same time, I know that I am not living up to my potential lying in a hospital bed. I am torn. I am always torn.
There are multiple things that get me through the day. The first and most vital is Jesus. This sounds weird, I know, but this is the only purpose I have found for the pain in knowing that there is a bigger purpose in all of this. Knowing that my pain is going to be used for good. Knowing that He is going to make something that has almost destroyed me into something I could never imagine. The second is nursing. The fact that I get to use my dozens of experiences of the hospital for good blows my mind man. I get to work with kids having childhoods and high school years just like mine. How cool is it that I get to relate with my adolescent patients who experience the hospital just like me? This is my motivation to keep going: using my experiences for His glory.
I know my best friends do not even know what a day living with CRPS and other chronic illnesses is like. I do my best to try to articulate what it is like while not feeling like a burden. It is hard to convey my life without someone feeling bad or wanting different. This is not what I want. I want understanding, patience, love, and grace. I do not want your pity because so many things amazing and unparalleled things have come from this diagnosis.
I walk on eggshells everyday. What if I go into a massive flare and have to be admitted to the hospital for more than a week? What if I cannot even make it to my brother’s wedding? What if I cannot do everything my friends are doing that day? These are just a few of the things that go through my mind multiple times a day. I stress. I worry. But I also know that I have made it up through today, and that is good enough. My effort is enough, because I am surviving, thriving, and loving the life that has come my way. Bring it, CRPS, because you haven’t won yet.