The prompt for the sermon was: What is your favorite Psalm and why? Over the summer I gave this sermon at St. Bride’s, St. Michael’s, and in a modified way as a testimony for an Open Table service. This sermon was paired with Psalm 139 and a gospel reading from John 9:1-7.
July 3rd, 2013, was the day I began to realize that my body was not as healthy as I had been led to believe. I remember that day so vividly because it was both a day filled with really unique experiences and also absolutely terrifying. That morning was spent at a historic farm with reenactors learning about life in rural New Mexico. I was hiking up a mountain when suddenly I could barely breathe and was in excruciating pain. That pain never really went away over the next 10 days of the hike. It is also really easy to remember since it was my 16th birthday.
I had a fairly normal suburban American childhood. Cookie cutter houses on cul-de-saced streets. No major health issues. No asthma, like one of my older brothers had. Some slight issues with my joints when I hit puberty and grew relatively fast but those seemed to get better with the help of ballet. Nothing to indicate that there was an error in my genetic code, lurking, making my body’s type 3 collagen be produced either incorrectly or not at all. Although from my 16th birthday on I would experience a lot of concerning and disjointed symptoms, I would not find out about this major issue in my genetic code until I was in University, and would not be diagnosed with Ehlers-Danlos Syndrome until I was 20 years old.
I grew up going to church every Sunday and had an almost perfect Sunday school attendance record. From an early age, I knew that Jesus loves me, ‘for the bible tells me so’. I heard all the classic kids’ stories many times, Noah’s ark and the good shepherd, but the imagery that always stuck with me, even from a young age, was that god made me in his image, just like Jesus was when he was made human, and that I was formed like clay into that image. Still to this day, that imagery resonates with me. However, when I was diagnosed with Ehlers-Danlos Syndrome that idea led to a major crisis of faith. How could I be made in gods image, by gods design, and have such a major flaw in my genetic code?
I really began to question how and why God would create me with “faulty” genes. Why would God do this to me? Why are there incurable and painful genetic disorders when we are meant to be made ‘perfectly’ in God’s image? I saw myself as imperfect and how could a perfect God make me this way. It made no sense to me and almost fully drove me away from faith.
In an effort to try to cling to my last strands of faith, I turned to the bible to see what the scriptures could justify God making me ‘wrong’. To be honest, at first glance, the bible didn’t really help. Seeing all the stories of Jesus healing the sick did not help because there is no cure for me, there are almost no treatment options, I just have to live in pain, and there is no messiah walking down the road to fix me at the moment, so I am just stuck in pain. For well over a year, I struggled with my faith and how many people prayed that I could be healed. I honestly came to hate those prayers because there is no fixing a genetic sequence that came into my family generations ago. I understood that people were praying for miracles of total healing like Jesus performed, but it hurt to know that they were praying for something that would never happen. This issue really strained my relationship with God and with prayer in general.
But then I heard psalm 139 and found a healthier way to think of my relationship with God.
For you created my inmost being;
you knit me together in my mother’s womb.
14 I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.
15 My frame was not hidden from you
when I was made in the secret place,
when I was woven together in the depths of the earth.
16 Your eyes saw my unformed body;
all the days ordained for me were written in your book
before one of them came to be.
Before I was even born God knit me together. God knit my genetic code. God put the genetic sequence in that gave me Ehlers-Danlos Syndrome. God saw my unformed body and all the days that would come before me. God knew my pain and struggle before I was even made.
That is a beautiful but hard thought. It still is hard to think that God saw all my pain ahead of me and choose to keep it in the plan for my life. But in our gospel reading, Jesus gives some insight into why I could be born with this inevitable pain. Jesus says my Ehlers-Danlos is not a burden I have to face because of sin, no, I have this burden and pain because God knows I have work to do. Since I am still likely in the early stages of this work, I don’t know what it is, but God does. God made me exactly as I am, perfectly how God needs me to be because there is work to be done that requires that I be exactly who I am.
That is an extremely daunting thought, but also so calming to me. I may not know what my future holds. I may not know how my body will continue to change and what pain will come with it as my connective tissues continue to degrade. But God does. My work may be spreading awareness, it may be making major changes to systems that oppress people with invisible disabilities, or it may be as simple as smiling at a stranger who needs to see one. God’s plans can be big, or they can be minuscule moments, but either way, I know God gave me Ehlers-Danlos because it changes how I interact with creation.
Since I was diagnosed, my perception of the world has changed greatly. Things that once were easy for me, like getting out of bed in the morning and brushing my teeth, are not necessarily easy for me anymore so I don’t take them for granted when some days they are easy for me. My perception of how others might be struggling with everyday tasks has also greatly changed. When I enter a building I automatically do a mental assessment of how accessible it is to people with mobility issues. Because of one change in my DNA, I see the world in a way very few people do. I think God knew this would be true when I was woven together. God saw past the pain to the benefits. I may not be perfect by societal standards, but I believe that I am perfectly what God made me be, genetic disorder and all.
Charlotte in Liverpool 