Rare Disease Day 2016 


What is it like to live with a rare disease? This is what my daughter says:

“Doctors try to help but no one does.”

“I don’t know why I have ataxia and I don’t know why I can’t hear no more. No body does.”

“I have to go to the doctor a lot. That’s boring.”

“Everybody wants to poke me and give me a blood shot (blood draw)!”

“I used to be able to walk and not have to use a walker all the time but now I can’t and nobody know’s why.”

“Why is there no medicine to make me feel better?”

As her mom, I struggle to answer her questions. But what can I say? She is now 20 and has lived with an undiagnosed mystery disease her entire life. The closest label her illness has is Mitochondrial Disease. But which one? What type? How degenerative is it? How long does she have?

We don’t know.

In my own world, writing

Blogging? What’s that. Right now I am immersed in my own, silent writing. I’m hidden away in a world I’ve created through language and ink. It takes focus and dedication to create this world, so I don’t want to wander away for even a brief moment. If I do, I might lose my way. After months of false starts and ideas, I’ve found the path through my own little forest of creativity. Writing it down is like following a candle’s flame in the distance; keep the light in sight and you won’t get lost.

Occasionally I need to trust I’ll find my way again and leave my own world. The real world with all its problems and joys grabs my attention. It’s a tricky balance: imagination and practicality. I need to stay grounded and aware of life, while at the same time protect solitude so I can write. I don’t want to tune out reality so much that I lose touch with time. But I also don’t want to get bogged down in bills and politics so much my imagination suffers. My awareness is juggling intuition. I write, therefore I am.

Because time to write is such a struggle, I tend to hang on to that state of mind with all my might. Nooooooo… I don’t want to pick up my daughter from school or return a phone call or wash another towel. I want to lock myself in my room and write. I’m a mother and a wife and a dog owner and I have a garden. I love my family, but just like all moms, I tend to give them all too much. So I cling to writing as if it’s the only thing that’s really mine.

When I’m engrossed in writing my book, I don’t blog. I know we’re “supposed” to; gotta keep building that audience and platform, the experts say. But when writing time is fleeting, it’s hard to care. I just want to write; let my readers find me on their own.

My own writing world is calling. Time to chase that candle flame again.