Unlike most everyone else, my 2016 didn’t begin on January 1st. I started measuring my past year on December 25th, 2015. What an odd day to start a year. What an odd way to measure the days that have passed, but here I am writing on the days surrounding the 25th, the day when I feel like my whole year started. It’s an anniversary I wish I didn’t have tucked away in my memory, but I hold on to it regardless. It’s one of those memories that gets seared into my brain, one of those days I just can’t forget.
Last Christmas I was in the hospital for 7 days. I had been sick for a year and a half before, and barring a miracle from the Lord, I will be sick for the rest of my life.
When I went into the hospital, no one knew what was wrong with me. There’s no real way for me to tell you what happened, except to say that a year and a half of me being constantly sick crashed into me on December 25th. That week marked the start of a new life for me, a life I never could’ve prepared for. In the year and a half I was sick before that week it had never crossed my mind that I was going to be sick like this for the rest of my life. This was always something I was going to grow out of this.This was always something that was going to go away… but that’s just not the case anymore.
When I was in the hospital that week, and really for the rest of the year, I was at a crossroads of begging God to heal me and screaming at Him for causing this. I was angry. I was so angry. Some days, I still have to fight off the anger. It manifests itself in the form of hot tears at the drop of a hat, the inability to hold a conversation with my parents without me yelling, and my heart galloping whenever I am gripped by the white-hot anger.
Sometimes I can’t see because I am so angry, and I can’t breathe because I’m so furious.
I began to struggle with crushing depression, because how do you process a week in the hospital that turns into so much more than just a week in a hospital. My depression became a question of how do you process being sick.
How do you process being sick?
How do you process this life you didn’t know you were getting, but is now in your hands? How do you process this new story that is being written right it front of you?
Some days (most days) I still don’t know how to process that in my mind, how to say it out loud, how to explain it to people when I very awkwardly stumble across it. I am brash and bold when I talk to people about my life, but how am I supposed to explain things that my own heart finds inexplicable?
If you’ve never spent time in a hospital, let me share something with you: it can break you to pieces. In one week, I saw myself crumble. I was broken by loneliness, fear, and by utter darkness. Hospitals are not where you go to grow, although it was the only place I could be in those days to try and figure out what was going on.
What hurt me the most was that I didn’t want to let God in, because I blamed Him for letting me get like this. That gave space for the enemy to come and planted himself there instead. Doubt began to grow.
I questioned who I was. I questioned if what I was feeling, if what I knew in my gut was wrong, was actually wrong.
That questioning and that doubt was the worst part. Looking up at doctors who didn’t know what’s wrong with me planted a seed of doubt in my heart that grew and grew and grew, until I began to wonder if it was all in my head. I look back, and I still question who I am because of what happened. I’m writing this, and I feel like am unable to reconcile the pain of being chronically ill with the acceptance that God has a reason for the story He is writing.
But we are still in this miraculous season of reconciliation.
Christmas… Christmas is the season of reconciliation. Christmas is the season where sinners were reconciled with their first love: God. Jesus was born, and His birth signified the beginning of the reconciliation between us and God.
If that sort of reconciliation can happen, I believe that on the first anniversary of what I truly believe what was the worst week of my life, I can begin to reconcile all of the pain I have with the hope of restoration God holds.
God never felt further from me than during that week. God was never closer to me than during that week. I hold onto the belief that He was there every single second, through every tear. He was there, even though I felt so alone. He was there when I cried out. He was there when I was consumed by pain. He was there. He was there. I know He was there, even though I didn’t know He was there then.
The darkness that surrounds that week is part of why it looms as an anniversary I can’t forget. And maybe I need to remember it, because the lessons that I learned from those days and from that time on have shaped me into the fighter I am today.
I am still fighting, but that week helped form me into who I am now, and because of those days I am stronger and fight harder than ever before.
But it is hard.
Some nights I have to be at home and watch my phone as my friends dance across the screen. I see concerts, highways, late night talks, and shopping trips. I watch as the life I was finally happy to be living move forward as I stand still, because it hurts to live in this body.
I swallow my pills. One, two, three, four, losing count as the different shapes and sizes go into my body and try to make it better. Make me better. I sit in my bed watching as my body changes from healthy to frail, the muscles I was learning to work for slowly disappear into the sheets. And I can see that the seconds take their toll on me physically, and I can feel them take a piece of me mentally.
I miss my life before it looked like this, but I’m here now. I’m here and wondering how I can ever get to a good place again. Will my body ever return to a semi-normal place again? Will my life ever look like it used to? How are you supposed to cope and reconcile when what you’re most frustrated with is yourself and this body you have?
So I sit and I ask “Why did God make me like this?” I wake up every day of my life and wonder that as I look in the mirror and see a girl who looks whole but feels like her body cannot sustain her.
I write my prayers in my journal and every day I ask God what He’s doing in my life. Maybe I started this that week in the hospital when I realized that this is my life. This is my life. We only get one life and this is my life and I need to ask God what my purpose is with this life so I can fully live that purpose.
Maybe I started asking God when the doctors told me I needed to have at least 3 more surgeries to correct the genetic damage in my hips and ankles, even though I’m barely surviving after my last one.
One of my favorite quotes I’ve ever read came from a post about what it’s like to be diagnosed with a chronic illness. It says that “… [the] illness will redirect your life from this moment on.”
Here’s the thing that I’ve come to realize in the past couple of months: my life has just been been redirected. I think part of why my depression got so dark and deep was because I never wanted to admit that my life was going to look different after I was diagnosed with so many different illnesses and genetic malformations. What 20 (almost 21 year old) wants to look in the mirror and say that her life is going to different than her plans she thought were so perfect?
But my life has not stopped. Just because it’s going to look different doesn’t mean it’s going to look any less beautiful. In fact, I think it’s going to look a thousand times better now that I’m letting God write my story.
It’s been a year. It is time for me to reconcile my heart with His will. He has a glorious purpose, and I know that while my life looks different, it is no harder than anyone else’s.
And maybe December 25th was a catalyst.
It was a catalyst for my new life. And this new life has led me to a find a new depth in my faith.
Being sick does not have to be my label. It does not have to be who I see when I wake up in the morning. I can make a choice every day whether or not I am going to see my life as a gift, whether or not I am going to fight to be here, whether or not I am going to fight for sunshine. So….my life is a gift. I am going to fight to be here. And I will always fight for the light and warmth. My chronic illnesses are hard and debilitating, but not defining, because only God can define.
I have been humbled by God’s unfailing love and the stories He writes. I could never write a story better than the one God has crafted. I never thought my life would look like it does right now, but I’m praising God for every single second. I am blessed to be alive right now after the year I have (there were moments that it was up in the air). I believe that He is calling me to live a life with such a mighty purpose, and He has plans for my life that far surpass the plans I wrote for myself.
I believe part of His plan is opening the doors for me to share my health journey with others, because in this world I am sure as heck not the only one who struggles. We are not alone.
2016 has been a year insane stories of me learning what it mean to be a true warrior in my own life. I have fought and fought and fought, and if 2017 is anything like this past year, well then…. I’m ready. This year has shown me that though my body may not always sustain me, the spirit of the Lord will.