Monthly Archives: January 2015

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The Value of a Moment

Having a chronic illness can sometimes take your breath away. Literally. So it’s hard to remember that life is life is happening all around you while you’re busy struggling for air.

Whether you’re reading that figuratively or literally, when you have a chronic illness or chronic pain it’s important to remember to stop and notice the moments. Good days happen. Bad days happen. And both are chock full of moments that matter.

Here are a few of my moments that mattered this week:

  • My prayers for an appointment change for the doctor were answered!
  • My daughter submitted her college application and the art portfolio she’s been working hard at all year.
  • My AHDH son had a great victory at school.
  • We’re set to have family time tomorrow morning, and it looks like all is well. (Sometimes illness interrupts this, so fingers crossed and prayers said!)
  • I was able to accomplish what I needed to at work prepping to be away for a bit while I recover from surgery.

All in all, it was a good week. And it would be super easy to skip right through all the moments that make up life. But let’s not do that. Take time to launch some mini-celebrations. Why not have a brownie or glass of lemonade to celebrate?

In my list, I didn’t include a few other important moments that aren’t exactly celebrations. Like a high school friend lost her husband unexpectedly this week. And we discovered a hidden problem that needs attention. Those moments matter too. They demand a response.

Stop and notice. Respond with your whole self. Just because you’re sick or in pain doesn’t mean you cannot fully participate in life! Celebrate fully. Respond gently. And notice the moments life creates!

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My Chronic Illness Bucket List

We all have dreams: things we want to do, places we’d like to go, people we’d like to become. Humanity has been gifted with the inordinate capacity to dream about becoming something more than they already are. People who deal with chronic illness share in this too. We’re not as discontent as we might sometimes feel; instead sometimes we’re simply wrestling with the craving to reach out and touch the stars, to experience life to the fullest.

Dreams are amazing. But if our lives are only spent dreaming and are not also spent doing, we will end our existence with a pile of regret. Anyone with chronic illness familiar with regret? Most of us are likely too cozy with this feeling. So this year, I challenge you to make a bucket list. You know, that list of dreams you want to accomplish before you “kick the bucket” and you no longer have the chance. Why not take a few minutes and think about what’s really important to you? (Can’t leave your bed? Check out my post about a bedside bucket list.)

Personally, I’ve always been quite goal oriented. It’s super important to me that people in my family, on my work team, and in my life are all headed in the same direction, working together to achieve the same goals. And every year I set personal goals. Some of them are short term desires, and a few are long-term dreams. I find what’s written down and reviewed regularly will receive a ton more attention that what’s simply floating around in my mind.

To be honest, though, I’ve never created a dream bucket list. I’ve had ideas of things that are important to me, but when I got sicker, I sort of stopped dreaming. And a bucket list seemed extravagant to me. For a while, I stopped doing too; I only had the energy to attend to the “must do” list. Certainly anyone with chronic illness can understand what that’s like. Some days, some weeks or some years are simply difficult, to say the least.

But now…now it’s time…time to fight for my dreams.

Today, I start my bucket list. I’m going big.

  • Item #1: Visit Paris. It’s always been my dream to visit France. Time to make a plan?
  • Item #2: Own a house on a lake. Well, at least on water. This one might happen soon. It might be a pond, but I’ll take it. It’s so exciting!
  • Item #3: Become a magazine editor. Wow. That one just happened. I’m the new editor for the Mastocytosis Chronicles. One edition down, lots more to go.
  • Item #4: I don’t know…

My personal assignment to myself: finish my bucket list. Dare to dream. Chronic illness is NOT an excuse for giving up on the human search for life at its fullest!