Cathryn's Story

You might remember me mentioning the booklet that I helped my sister Cathryn write called "A Story About Me and AT" and promising to post it.... well here it is.  If I could only describe the work that went into this...

In 2000, Cathryn Achilles was diagnosed with Ataxia-Telangiectasia, a debilitating genetic disorder for which there is no cure. The following is her story in her own words:

I shuffled across the stage in my daisy costume, trying to point my toes and keep my gigantic lace bonnet from toppling off my head. The crowd roared and I bowed again and again, soaking up their applause with all of my soul. I knew then, at the age of five that I wanted to be a ballerina when I grew up.  This dream as well as many others dwindled after numerous doctor visits and blood tests finally proved my parents’ concern that there was something wrong with me. I was 8 years old when we learned that I have a disease called Ataxia-Telangiectasia (A-T), a rare but deadly disorder which has no cure. I was in tears when my parents told me and my two siblings that my life will never be the same.

Not long after my diagnosis my family and I headed for Johns-Hopkins Medical Clinic in Baltimore to learn more about A-T.  While we were at the hospital we discovered a number of complications we would have to endure, the biggest one being gradual loss of muscle control.  For example, I aspirate liquids when I drink, I need larger prints to help me read, and I need a special keyboard to help me type. I needed a walker to help me walk—and now I use a wheelchair.

While the disease mainly affects my physical body, it affects my emotions and feelings as well. There are many struggles that come with being disabled or handicapped, but I believe Jesus Christ has His reason for each one.

One of my greatest struggles is making friends.  People look at me and they see “wheelchair,” not me or a potential friend. They prejudge my character and assume that if I am in a wheelchair, my personality must be limited. My true friends have stayed with me through the difficulty of my disease, but many have given up. It is even more difficult now, since my family moved away from my childhood town, and I am far away from the friends that I do have. Although this is painful, Jesus can understand and sympathize with me. Many people throughout His life didn’t accept Him and later rejected Him completely. Jesus continues to be my Best Friend, He knows me and listens to my every prayer. He is everything I need.

There are many dreams and fun things I would love to pursue that A-T prevents. Some of these smothered hopes include being a ballerina, playing the harp and other instruments, and being an Olympic figure skater or gymnast. Another is being a professional artist. I have always loved painting, drawing, and sculpting, and this disease has slowly taken these abilities away from me. But Jesus and His mercy will let me live on blissfully in Heaven for all eternity where I can dance before God’s throne and create art to His glory and praise. My dreams may be squelched here on Earth, but they will all come true in Heaven.

Another great struggle is feeling conspicuously different in society. I feel “in the way” all the time with my wheelchair, I am clumsy, and I stick out like a sore thumb. I sometimes wish that I could turn invisible because I am embarrassed. I can’t do things that most people can, and that makes me feel inferior. But Jesus helps me in this struggle too! He teaches in the Bible that I am to stand up for what I believe in, and I believe He wants us to be different. As a Christian, I am “not of this world,” my true home is in Heaven with Christ. If I stand out, I am able to be a better witness for Him.

A hard question to ask is, “Why me?” I don‘t know all the answers, but this I do know: it was God’s will. He planned it. “For I know the plans I have for you, declares the LORD, plans for welfare and not for evil, to give you a future and a hope.” Jeremiah 29:11  He wanted this to happen for His own purposes. I love Him and trust Him that everything will be fine, no matter how hard it is.  “And we know that for those who love God all things work together for good, for those who are called according to His purpose.” Romans 8:28  He has proven His love for me. I have peace of heart and of mind knowing these things to be true. I know this because He has shown me the truth through His Word.  God is not unfair. He’s compassionate and merciful and full of grace. He gives in abundance. If He were “fair” all mankind would deserve to be destroyed because of sin.  “For all have sinned and fall short of the glory of God.” Romans 3:23  “For the wages of sin is death, but the free gift of God is eternal life in Christ Jesus our Lord.” Romans 6:23  Throughout all of the physical and emotional struggles that I face daily with A-T, my Jesus is there to help me through and give me hope. One of my favorite verses is John 16:33: “I have told you these things so that in me you may have peace. In this world you will have trouble, but take heart. I have overcome the world.”

visit this link to find out more about A-T and research to find a cure.