When I was thirteen, I received a friend request on social media from a guy in another state. We were both part of the same academic/leadership organization, and we were going to spend some of the summer together at a convention and a camp. Almost immediately after I accepted the friend request, the guy started... Continue Reading →
This blurry photo from six years ago still brings tears to my eyes. Throughout my 24 years with this disease/disability and its challenges, I’ve asked very few people to make accommodations for me. I’ve rarely spoken up about my limitations. I’ve sparingly sought to modify a rule or standard for my own benefit. Why? Throughout... Continue Reading →
While shaking my right hand, most people typically react to my misshapen hand in one of four ways: 1. The person quickly lets go of my hand as soon our hands collide. 2. The person lets go of my hand, quickly glances at it, and squeezes my hand again, attempting to apologize for the momentary... Continue Reading →
When I was in pre-k, I started praying for just one thing — healing. I knew doctors couldn’t “fix” me, but I believed that God could. At 24 years old, I’m glad He didn’t give me what I wanted in that season of life. Why? In this season of life, which has been filled with... Continue Reading →
I was standing outside my mom’s office when I noticed a young boy coming toward me. His eyes widened as he caught a glimpse of my right hand. Before I could even attempt to cover up my hands, the boy started screaming and running away from me. As I listened to his screams and held... Continue Reading →
I was born with a syndrome (or as I sometimes call it: a rare disease). Does that mean I’m disabled? Not necessarily. You could have a syndrome that isn’t disabling, and you could have a disability that isn’t caused by a congenital syndrome. You could even be a like me — someone who was born... Continue Reading →
When you’re born with a debilitating disease, you’re born with health complications. Your body doesn’t wait until you’ve had a long, “good” life to start failing you. I’m young, but I’ve endured almost 24 years of problems and pain. Ethan and I have married for a year and a half, but we’re veterans at upholding... Continue Reading →
“Hey, let me do it,” my sister whispered while reaching for my french fries. As she offered to feed me, I tried to count how many people were watching me fail to feed myself with my dysfunctional right hand. For just a moment, I want you to step into my shoes. You’re 23 years old.... Continue Reading →
“How long will this take?” I asked the MRI technician. As my body glided into the MRI machine, he replied, “About forty minutes.” Two hours later, I began to cringe in pain. “Stay still! Stay still!” I reminded myself. But I couldn’t. My hand felt like it was on fire. My back ached because of... Continue Reading →
“It’s going to get progressively worse,” the doctor informed me. I smiled and nodded my head as I responded, “I know.” But I didn’t actually know. The past few years have been relatively “easy” in comparison to my adolescent years. As the major health complications decreased, I became increasingly convinced that life would progressively “normalize.”... Continue Reading →
Growing in the Groaning 