My body is broken and has been since I was a baby. I wasn’t born that way, but I don’t remember the two months of my life before the sickness set in. I don’t remember being a few months old and never learning how to crawl properly because my wrists hurt. I don’t remember being one year old and screaming when my mom got me out of my carseat because my body was stiff and to move it caused me pain. I don’t remember it, but I know what it felt like, because I still experience it to this day.
I was barely three years old and dressed in a pretty pink dress with flowers on it when I went to a hospital that had a giant fish aquarium in the waiting room. There was a doctor there who told my parents what was wrong with me. They finally knew why I limped when I walked. They finally knew why my knee looked funny; I had a disease.
The chronic illness that took over my body is named Juvenile Rheumatoid Arthritis, aka JRA. The Juvenile part was there to remind me throughout my childhood that I had the kid version. As an adult I don’t know if the J still applies to my sickness or not, so sometimes I leave it off. Kid version or not, JRA broke my body.
I’ve met people since getting older who have had arthritis set in as adults and they look at me and say, “And you’ve experienced this your whole life. I’m so sorry!” And sometimes they cry, and I think to myself, “Yeah, but I don’t know anything else.”
What is it like to walk without pain?
What does it feel like to be able to grab onto things and twist off lids and pump gas without wondering if you’ll be able to do it yourself or if you’ll have to ask for help? Again.
What about waking up and literally being able to jump up and use every part of your body?
What does that feel like?
I’ve never lived like that, so I don’t feel that loss the same way as an adult who has that torn away from them halfway into their lives. I feel sorrier for them in a way. Not that I don’t feel the loss in my own way, because believe me, I do, but it doesn’t feel the same.
I honestly don’t remember ever being told I had JRA, I feel like I was just told so many times until I was old enough to understand it. I didn’t have a moment where my parents sat me down and said, “Baylea, this is why you’re different.” I also don’t remember when the bone changes started. They must have started when I was young because I remember one summer I could sort of do cartwheels with my grandma, and the next summer I couldn’t even try because my wrists had grown so much worse.
Things didn’t get really bad until I was twelve. That’s when I started going to the doctor’s again. My neck became affected and my hands hurts when I did certain things with them, like washing the dishes, cutting vegetables and using scissors. All I did that winter was lay on the couch and read, which sounds like a lovely thing, right? I still remember the feeling of new pain, pain in places that hadn’t hurt before. Pain that was worse than it use to be. I was watching my peers grow up and embrace their journey into adulthood and I was on the sideline wishing I could be like them.
My body is broken. My knees swell up until I can’t walk. My wrists ache, and my hips get so stiff I walk like a pregnant lady with a nine-month bump. I can’t grip things because my hands are weak. When I eat something that stresses out my body the first thing to start aching is my right shoulder, and my feet have walked so many painful miles, sometimes to the point where I don’t think I can go one more step. But I always do, because that’s what I have to do. I wake up in the morning, feel pain, get out of bed and feel more pain, slowly warm up my joints and hope that as the day goes on, some of the pain will dissipate. A lot of the time it does so that I don’t even remember I’m in pain. And some days, like this past week, I feel so much pain that I can’t do anything except cope.
My room is a mess at the moment. I hate it. I have a basket of laundry and a half-empty suitcase from my trip to Turkey. I have checks I need to mail in and a pile of clothes to put away, but I couldn’t even handle getting dressed. And I hate it, because I don’t want a broken body. I don’t want knees and hips that don’t work right and hands that hurt too easily and dealing with an overworked body that wakes me up in the middle of the night with an ache that goes all the way to my bones.
But this is what I have. I have a broken body. I’ve lived a life of limitations and that’s just what I’ve had to go through, and I am thankful. Guys, I am so thankful. Because I’m the first one to say that I’m not strong enough to do things on my own. The story of my life is to lean into the strength of others. My family. My friends. Jesus. I can’t live on my own because I’m not capable of doing the things I would need to by myself. I’ve had to push through really hard things, but do you know how amazing you feel on the other side of really hard things? Having a broken body doesn’t mean I can just move houses or schools or find new friends to escape my problems. This body is with me until the day I die. There is no cure for JRA. There is no way to regain what I’ve lost aside from a miracle (which I do hope and pray for).
I have learned the sweetness of persevering until breakthrough.
I have found comfort in the fact that Jesus was a man, who knows the weakness of human flesh.
He knew pain.
He knew loneliness.
I know Him in ways that people with healthy, whole bodies will never, ever know Him and I honestly wouldn’t trade that for the world. He has been my friend when no one else had time for a girl with a broken body. His body broke for me so that one day my body won’t be broken, and I think that is the most beautiful thing in the world. I long for eternity in a way people don’t understand, because their bodies aren’t broken.
In two years I will have had this disease for three decades. That’s a long time to have a broken body, but it’s also a long time to know beyond the shadow of a doubt that in my weakness, God is my strength and my friend.
