I wrote a book and started a blog centered on cystinosis and then realized that the blog was near impossible to maintain because life is not centered on cystinosis. Out of necessity and in different seasons, different things can come to dominate our lives, and therefore, our thoughts. (Or is it our thoughts, and therefore, our lives?)
I'm still awaiting the cystinosis season - a time of cystinosis domination.
I've come to the conclusion that I may be waiting a very long time. I don't sweat rare disease profundity or regularly see things with cystinosis-colored glasses. (Like most people, my sweat is mainly made up of water, with a little salt and other minerals thrown in.)
This blog is about so much more than living with cystinosis. This is a blog about living life despite all its flaws - which I think the very name suggestions - and flaws are sometimes perfectly mundane.
There is a lot of mundane. While it's true that there is paradoxical living in each of our lives - something I highlight in RSWR - there is much more non-paradoxical living.
I will still take opportunities to combat labels and misconceptions; for so many reasons, this is an important part of this blog. Let's not be ruled by labels. Let's stop applauding the mundane as amazing in light of cystinosis and open ourselves up to the idea that maybe life is just amazing for all of us, period, and cystinosis doesn't give us something to prove. Maybe living with cystinosis at the age of 33 and having a job, a spouse, and a mountain climbing spirit isn't any more incredible than it is for the next person, because after all, life is equally flawed for all of us.
Equally flawed for all of us. Does that rock your world? Hurt you because your scars are larger? How do you know?
I've seen cystinosis labeled as terminal, whereas the preeminent cystinosis researcher in the country has evaluated my lifespan as 70+ years. That sounds like an average existence. Which is how I live most of the time.
Why limit yourself with a word? A label? A thought domination? A cystinosis season that goes on day in and day out?
Why limit yourself in a limitless world?
Life may be different but we have much in common.
I am excited about this blog and its future mundanities.
To removing labels,