When You Aren’t Sure You Can Live Like This

When You Aren’t Sure You Can Live Like This

May 4, 2017 | Posted in: Chronic Life, Coping 101, Rare Disease

Like a bird I soared, high above the clouds, soaking in the sun, inhaling the sheer goodness of life. I breathed in possibilities and exhaled delight. Surely, the sun was a more golden hue than it had ever been before. Was that a lullaby of babies laughing I heard? All was right with the world.

And then I plummeted to the ground, hard and fast. I’m almost certain I landed in three-day-old dog poop.

You see, I know how to be sick. Click To Tweet I know how to adjust to medications, how to sit in the E.R. by myself. I know how to crawl out of my bed and take my daughter to preschool when it feels like death is imminent. It’s no issue for me to administer my own intravenous medications. However, I’d forgotten how to be well. Let’s be honest. I’d forgotten how to be distant cousins with Well.

And yet, one random week, some distant cousin of Well I hadn’t seen in ten years or more showed up at my door and wanted to know if she could stay for a few days. I knew her visit would be brief, but I wanted to make the most of it. You see, Well and all of her cousins, we have the most fun together. So I ushered her in and the fun began.

Well’s cousin and I did things I hadn’t done in so long I’d forgotten how to do them. I found pieces of me I didn’t know were missing. It was pure bliss. I made sure to remind myself Well’s cousin would be packing up her things and leaving anytime. She comes to visit me so rarely. I’ve learned not to get too attached to her.

And yet, when I awoke that Tuesday morning to find her gone, it felt like a death. Worse, it seemed as though she’d invited my mortal enemy “Worse than ever” to come and stay in her place. I stared down at repulsive, hot, swollen joints. I swallowed hard, knowingly. Not only was I entering the flare from hell, I was coming down with something? Or was an infection setting in?

What had I done wrong? Why did Well and all of her cousins seem to enjoy the company of others over me? Why did not really living hurt so much more after you’d had a tiny taste of really living? How long would it be before I tasted it again?

I walked around the house in a dazed stupor that day. Finally, I crawled into my bed, prescribing self-care for my body and soul. When my husband asked softly, “Are you okay?” I said, “No. I can’t live like this. Like some half-human, half-not, mutant.” And then he wrapped me in his arms while I sobbed.

Oh, how it hurts to fall. Click To Tweet

Over the next few days, I grieved my fall. I also reflected on my days of flight. How glorious they’d been. What might I want to do the next time I took flight?

When Well’s cousin came calling again what adventures would she have in store? Excitement began to bubble. The sun would shine again. I looked out my window, there it was.

My dear friend says I have a gift for being present even when I can’t be physically present. What if I’m flying and I don’t even know it?

What if chronic illness and rare disease keep Well’s cousin from knocking on my door but they can’t keep me from offering presence even when I can’t be physically present? What if they can’t keep me from seeing the beauty all around me?

What if chronic illness and rare disease can’t stop the sun from shining again? Click To Tweet

 * A version of the post first appeared at The Rare Daily

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