Faith “DESPITE” Ehlers-Danlos Syndrome

Could you imagine living in constant, chronic pain? Try to picture waking up experiencing agonizing pain; envision going about your day hurting, and then going back to sleep at night, the way you felt when you woke up, or possibly worse. Every day, every hour, every minute, every second. Now attempt to imagine not being able to get rid of that pain, no matter what you do. It’s always there.

This is the reality that Lancaster resident Karley Hill lives in. She has a type of a disease called Ehlers-Danlos Syndrome (EDS), an inherited disorder that affects about 1 in 5,000 people and is caused by faulty collagens. And when we heard about Karley through someone at the church, the church school jumped at the opportunity to make Karley the focus of our Advent project this year. We started by selling beautiful poinsettias at the church; buyers had the option of buying them for themselves and/or donating some to the church (I would like to mention that the back of our mini-van looked so pretty on the way to the church, full of red and green poinsettias).  

We also had a container at the church that had “Coins for Karley” written on it. There, parishioners could drop their spare change, and I was surprised at how much money was contributed in simply change alone. At the end of Advent, we had raised a total of $1,200, and we asked Karley and her mother, Sharon Hill, if they would like to come to our church for our St. Sava celebration. They were happy to show up; the Sunday School and the church were grateful to accommodate for the day.

The chairs were set up in rows in the Sunday School area, with two chairs in front for Karley and Mrs. Hill. The children listened attentively while the two told the story of how Karley used to be a healthy, energetic basketball player, until one day the soreness would not go away. Mrs. Hill explained how the doctors told her that Karley’s best friend would be ice packs for awhile, and that she was just sore from being aggressive while playing. But, the pain continued to grow, until it was too unbearable. Physician after physician, hospital visit after hospital visit, and Karley was diagnosed with EDS. The Hills explained the braces Karley has to wear and the hopeful upcoming service dog that will help her greatly. I believe the whole Sunday School, students and teachers, were enlightened by the strength and perseverance this young lady possesses.  

The St. Sava program that day was a success. Nathan Mierski and I were given the privilege of being elected Kumovi this year, so we sat at the head table with Karley and Mrs. Hill. The Sunday School put on a wonderful performance of Serbian and English recitations, dances, and tambura music, and I received the honor of talking directly with the Hills about EDS and pain. Parishioners would walk by, give Karley their regards, and without thought, touch her shoulder (like one would normally do to offer encouragement). I couldn’t help but to ask if it hurts worse when she is touched, and she said something along the lines of, “Yes, but most of the time I can put up with it.” She enjoys riding horses, a hobby we both have in common. Unlike me though, Karley has to decide when she is going to suffer through her pain, or “put it on a shelf” and put up with it so she can enjoy time with her horse.  

That is what I find amazing about this inspiring young lady (who is, well, my age, so I guess we’re both young ladies). She can channel her mind and tolerate pain, just to go on with her day. Her family’s word is “despite.” They have good days, despite the pain. They have faith, despite EDS. We were blessed with her and Mrs. Hill’s presence at our 2013 St. Sava celebration, and we certainly hope they will join us again very soon. I will leave you a motivational quote I hung in my room next to my bed some time before I even knew about Karley or Ehlers-Danlos Syndrome, there as inspiration for my own use:

“Your training partner’s name is pain. You start out trying to ignore him. Can’t do it. You attempt to reason with him. No way. You try to strike a bargain. Hah. You plead. You say “Please stop, please go away. I promise never ever to do this again if you just leave me alone.” But he won’t. Pain only climbs off if you do. Then you’re beaten.”    -Scott Martin