Why is it that anything painful or anyone in suffering is an automatic undesirable person or a negative occurrence? I have observed in my culture and society that good health is equivalent to a better person, a better life, or a successful life. As someone whose lifestyle is defined by “bad health” am I a bad person, or not living my life as I should, or not doing as much because of the “hindrance” of my daily pain?
Pain is not always a negative. Through pain, a person experiences growth, healing, and a heightened sense of awareness and compassion. Those are all positives!
Cystinosis has always appeared in my imagination as an ice crystal. It was something so cold to destroy my body yet so beautiful because it creates such special people.
I am a 2010 graduate from Bible college and have attended Christian schools my whole life up until recently enrolling in University of Wisconsin’s creative writing program. Lately, I have been pondering what people mean when they say the following to me: “I’m sorry you’re so sick”, “I wish I could take your pain away”, and “Well, we’ll just pray God’s blessings on your health”. I know all is meant for my good, but none of these phrases are comforting or encouraging to me as a human being living with terminal illness.
I am not sorry I am “so sick”. Living with cystinosis has done something for me that you cannot teach in a classroom or understand through any amount of Christian education. It was through the pain of throwing up, medicines, treatments, and hospital visits that reaching out to God became a lifestyle for me, not just a Sunday morning ritual. It was through the sorrows of not knowing if I would live past the age of twelve that I have groped for the Hand of God early in life. It was through the sufferings of living day by day to graduate high school and college that I became a brother to Jesus Christ. After all, a title of His is man of sorrows and did He not bring the ultimate positives of this life, as in love and hope and faith, through extreme negatives?
I am a better person living a better life and am a success story to those living with chronic pain and troubles. Unhealthy people and people in tough times have the blessings of God upon them as well. It’s not always noticeable bestowments like good health and riches. God’s presence is intangible and He pours His love on ALL, not a select group in the earth’s population. Look at the wonderful fellowship and support the cystinosis community has? It is through the children diagnosed with the “negative” of cystinosis that such a loving family has been created.
You know what I see now, in every ice crystal of cystinosis? I see a lush, green stem poking through a chipped crack in the ice, because those living with cystinosis are a cure for the healthy by living every day, each day of their lives.
I agree with singer/songwriter Laura Story when she asks, “What if your blessings come through raindrops? What if Your healing comes through tears? What if a thousand sleepless nights are what it takes to know You’re near? What if trials of this life, are Your mercies in disguise?” Living with cystinosis is a redefined blessing and we are nearest God’s heart. Have a good day living your blessed life!