I ordered the catalog some months ago on a whim. I’d been admiring the ad in the issues of Smithsonian I received from my in-laws, and one day when I was particularly feeling a sense of wanderlust, I ventured to the website and requested their brochure. I knew I would never afford the cruise, at least not while I had children at home and other responsibilities, but it didn’t keep me from dreaming.
I’ve always been an Egyptophile. I’m fascinated by the history, the hieroglyphs, the legacy of their ancient past. I love everything about modern-day Egypt too: the people, the beautiful culture, the food, the sun-washed vistas. In my spare time, I watch every documentary I can get my hands on, read travel guides, contemplate learning Arabic. I’m no stranger to the experiences that can be had in Egypt, at least in theory. And this particular travel company promised everything: all-inclusive travel, VIP access to restricted sites, and even one-on-one meetings with some of the leading Egyptologists in the world; men and women I felt I knew already from the hours of documentaries I’d watched. I couldn’t wait to see what else the brochure promised.
It took two months for the catalog to arrive. And in the meantime, my life turned upside down.
I was no stranger to the sickness that suddenly engulfed me. I’d first become acquainted with it five years ago, when I found myself in a freefall of debilitating symptoms and a whirlwind of doctor appointments. I’d had two massive flare-ups (relapses, really) followed by two periods of relative remission. But things were different now. Sometime just before the second remission, I’d finally received my diagnoses: celiac disease and small fiber neuropathy. I had overhauled my diet and my life, maintaining a hypervigilant gluten-free diet, cutting back to part-time work, taking mandatory daily naps, and keeping what my neurologist and I called “status quo.” And I was better. I was functional, and even (sometimes) a little better than functional.
I operated under the assumption that diagnosis and treatment had resolved my horrible symptoms, that as long as I maintained balance and strict dietary regimens, my symptoms would be kept to a minimum. I was free to imagine a future with exercise and travel and vacations to dream-worthy places like Egypt, with only my finances and some dietary modifications to hold me back.
The third relapse came out of nowhere, fast and furious. One day I noticed headaches and increased weariness in my legs. Within a week, I was mostly confined to the couch or bed outside of work, unable to cook, shower, or walk around the block without experiencing total exhaustion. I was dizzy, struggled to see, had tremors, and muscle weakness. I went back to using my cane, and knew that any longer distances would again require a wheelchair.
It wasn’t the symptoms themselves that rocked me to my core. It was the fact that they had come back–that they could come back. In spite of a diagnosis, in spite of careful management, in spite of nearly two years of keeping them at bay. They had come back. And that meant that now, for the rest of my life, they could do it again. I would never be free from the threat of relapse.
All of this had transpired in the two months it took for the brochure to arrive. The package came late one evening. I couldn’t imagine what it was until I tore it open and discovered the book of golden sandy pictures. I felt a small thrill, and began flipping through the pages. Pyramids at sunset. Groups gathered at the feet of the Sphynx listening to world-famous Egyptologists. Boat tours on the Nile. All of it was beautiful.
Suddenly the pictures began to blur. I found myself blinking to make sense of the words. My throat ached.
“What’s wrong?” my husband asked as he glanced over at me. “Are you OK?”
It took me a moment to formulate the words that seemed to be caught on the lump in my throat.
“I’ll never travel again,” I whispered. “I’ll never go to Egypt. It’s like the whole world is off-limits to me.”
The tears fell then, and I put my head in my hands and let them come. I’d been teetering on these tears for weeks, and it seemed fitting that Egypt would be the last straw. I let the grief flow. Not grief over Egypt necessarily (although it did break my heart). But grief over another season of loss: loss of myself; loss of my health; of my hobbies, my social life, my family. Loss of control over my body and my life. Loss of my dreams for the future. Loss of the assurance I’d had that everything would be all right moving forward, as long as I followed my carefully prescribed rules. Loss.
And that is the underbelly of chronic illness: loss. There are silver linings, and opportunities, and coping mechanisms. All of them are true and good. But sometimes the reality sneaks up on us in the pages of a travel guide. It cuts through all of the things we’ve constructed to get ourselves through, and we find we are face to face with our own limitations, with our loss. Grief is necessary, an integral part of chronic illness. We have to face it to live fully in our illness.
I don’t know what your Egypt might be, but you no doubt have one; that one place that unraveled things for you and brought your limitations right to the forefront. I hope you have the courage to sit with it. Don’t let it linger long before you find a new dream, mind you, or find a way to make accommodations for your original dream. But sit with it. Let it do its work in you. This is chronic illness, all of it.
- Disclaimer: I recognize that there are ways to make almost every dream accessible, even an all-access tour of Egypt. However, chronic illness and disability often require modification of those plans, and sometimes making alternative plans altogether. The world is NOT closed off to us; we simply need to find another entrance. Still, even this part of the journey comes with a sense of grief or loss, and we must face it full-on.