I was laying on the cold, hardwood floor again after drinking phospho cysteamine(the earlier form of Cystagon, treatment for Cystinosis). My stomach was roiling and I was overheating from the continuous waves of nausea that wracked my small frame. I was in tears. My five year old voice managing to encapsulate all my emotions in only one English word: “Why?”
I don’t remember understanding their meaning at the time, but I remember specific words my mother said to me because of the images they placed in my mind.
With tears in her eyes, she told me back in the early 1990s:
“Rebekah, everyone has their cross to bear in this life. Even Jesus, [who I had learned about in Sunday School], had one. Yours is called cystinosis. You don’t have a choice in your cross, but you do have a choice in how you respond to carrying it.”
I loved hearing stories about Jesus who I knew loved little children. With pictures from story Bibles in my mind and the warmth from the love I knew God had for me, I went on with being a child.
Looking back as a 30 year old, what my mother said contains a deeper meaning. A cross: a
symbol of suffering. In today’s American society and culture, suffering denotes negativity and is something of an elephant in most rooms. Suffering should never be admitted because it reminds people of weakness, vulnerability, neediness: those things that when admitted make other people uncomfortable, self-righteous, and morally superior. Even today’s American churches have embraced this perspective of American elitism and rarely preach Christ with His cross. They don’t preach about the Man of Sorrows, they preach about the Man of Benefits.
Nobody wants to admit, let alone feel, bruised and broken. Admitting needs and vulnerabilities is perceived as shameful and embarrassing.
Blessed, as defined Scripturally, are those good gifts that come out of want (Matthew 5:1-12). Blessings are attached to poor spirits,grieving spirits, submissive spirits, bereft spirits, wrongful spirits, pure spirits, peaceful spirits, and tortured spirits. One cannot experience a blessing unless they first have a lack. Twenty-first century blessings are defined as being happy and thankful for being supplied with a want. Blessings traditionally are expressed in thankfulness and gratitude for supplying a need. And this is where the difference lies: people don’t want to express joy over having needs met; people want to express joy over having wants and luxuries met.
To proclaim to the world that a need was met, is to proclaim to the world that you needed
heaven, comfort, inheritance, a filling, mercy, God, care, and a kingdom. Proclaiming to the
world that a need was met means you once were poor, hurting, family or friendless, empty,
criminal, faithless, destitute, and homeless. These are attributes or circumstances today’s
humans describe as wrong, negative, sinful, and horrifying.
So my cross is cystinosis: a disease that lasts forever in my earthly life.
Cystinosis isn’t common, but being common isn’t what’s normal. My reward isn’t in living a typical life. My reward is in finding my purpose within a body that has a genetic mutation and deletion on chromosome seventeen. One thing cystinosis has given me that I haven’t been given from society and culture is impartiality. Cystinosis doesn’t discriminate. I am on equal footing with so many different kinds of people because of this disease.
In the following articles in this series, I would like to share a few stories showing how I came to find my own voice and life’s goals through rare disease. I will be starting with how I first verbalized everything I had been hearing from my parents as a child, all the way to where I am now, in educating others on cystinosis as an adult.
Have your own take on growing up rare? Let us know here!
To learn more about cystinosis, check out our partner the Cystinosis Research Network here.
