Why Can’t I Take a Day Off from Cystinosis? Ummm, Maybe You Can…

I saw a quote, recently, that resonated with me. It said:

“I fight for my health every day, in ways most people don’t understand. I’m not lazy. I’M A WARRIOR.”

Dealing with a chronic illness like cystinosis–or, in my case, major depression–throughout the day can make you into a warrior. I know that in order to live, I have to keep fighting. Every. Day. Of. My. Life.

I sometimes wonder why I can’t take a sick day from my illness. You know, one day that doesn’t require balancing on the tight rope and the constant herding of errant thoughts. I’d love to call my brain and say, “Hey, you know what? I’m feeling well today, so I won’t be in. I’ll be back tomorrow.”

I’ve developed a list of what I’d like to do on that imaginary day. If you, too, would love to call in well with your rare disease, please feel free to copy this list and hang it on your refrigerator for inspiration.

  1. If it’s a nice day, I will sit in a park with a pocketful of birdseed, and scatter it a little at a time and write down the different birds I see. (Pigeon, pigeon, pigeon…) I know…
  2. If it’s a rainy day, I will make a pot of tea, pull a chair close to a window and watch the rain sliding down the panes. When I get bored with that, I’ll eat some crackers, and take a nap.
  3. I will visit my local library (online) and check out some electronic magazines. You need to have a library card with your local library to do this, so if you don’t have one… what are you waiting for? You can get all the latest celebrity gossip for free! Then, I will take my tablet over to my comfy chair and try to figure out what’s going on with Angelina and Brad.
  4. I will color in my “grown-up” coloring book, and when I get bored, I’ll have a popsicle–maybe two.
  5. I will watch funny cat videos, and videos of penguins tripping each other. Laughter feels sooo good.
  6. I’ll write a really sad poem. Then I’ll write a really happy one. When I get bored with that, I’ll make a tuna sandwich.

A friend of mine, who has been living with cystinosis since the age of two, is often the person I call when I need a “partner in crime.” When I told her about my list, she asked me to add one more thing:

7. Do not bother straightening up the kitchen. Take full advantage of your “well” day.

At the end of the day, there will be popsicle sticks and an empty tuna can on the counter and cracker crumbs EVERYWHERE. And I’ll go to bed happy a happy warrior, ready for real life in the morning.


Erica Zahn

Erica Zahn

Erica Zahn is passionate about raising awareness of rare diseases and disorders and helping people connect with the resources that may ease their journey. Erica has been a caregiver, and is a patient, herself, so she completely relates to the rare disease community--on a deeply personal level.

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