When Your Health Prevents You From Doing the Things That Bring You Joy

Two years ago, a friend and I sat and talked about how we wanted to spend our time and how we make our money. I wanted to spend as much time as possible writing and performing music, and I also wanted things like health insurance and a roof over my head. After several hours of ideas, he said, “Forget the money. If you could spend your days doing anything you want, what would you do?”

“Easy,” I replied, “I’d read books and mess around on my guitar all day.” He wrote that on a Post-it, and I put it on my living room wall where I could see it every day as a guide.

Within a few weeks of writing that post-it, however, life happened. My postural orthostatic tachycardia syndrome (POTS), a chronic illness with which I live, flared up in a dramatic way, and the next six months I could barely function as a human being. The six months following that were a very slow recovery. Very slow. The kind of recovery where only I could tell the improvement. Two years later, I’m still recovering.

This time, in addition to all the typical things that happen to me during POTS flare-ups – nausea, fatigue, brain fog, heat intolerance, exercise intolerance and every digestive issue I could imagine –  something had gone wrong with my eyes. I now had double vision, and reading became painful. I could read for 10 to 15 minutes, but the days of getting lost in a book for an afternoon were over. Around that time, I also stopped being able to listen to or make music. The sound of music, whether on the radio, or in the background of a commercial, or anywhere made me physically ill. And if I ever felt momentarily well enough to tolerate music, I was having a side effect from my medication where my hands would shake if I used them too much. I couldn’t play or hold a guitar for more than the length of a single song.

So there I was, recovering slowly in my apartment. And I could no longer do the things I wanted to spend all my time doing – reading books and playing guitar. The Post-it on my wall was a cruel joke, taunting me with its vision of what I wanted and couldn’t have.

And the Post-it on my wall was a deep lesson, reminding me not to focus on what I want and can’t have.

See, that’s how I wanted to spend my day because those two things brought me joy. They allowed me to be creative, to let my mind wander, to learn about things I had never thought of before. To get immersed in other worlds, to create something – a melody, a lyric, a thought – that had never existed before. But I loved them because they gave me joy, not because those things were joy. And so it was time. Time to let them go and look for joy elsewhere.

I live near the water, and last summer I started going to the ocean every day and stared at it for 30 minutes or two hours, or however long I wanted. And the most remarkable thing happened. The whales started coming. Almost every day I saw whales. Usually the moment right before I was sure that I wasn’t going to see a whale, that was when the whales would appear. The first time I saw one, I felt my eyes tear up. I let out a quick yelp. I felt a little lighter, a little bubbly inside…it was joy. The next day, when I saw them, I felt joy.  On the third day, I started to think that maybe the whales were coming just for me. I know they weren’t, but it felt that way. So I went to the water every day.

The nature of having POTS means that my life has gotten smaller – that is undeniable. I used to drive cross-country by myself, and I haven’t driven more than 30 miles from my home in two years. My world is mostly contained within my zip code. It took me a long time to learn that my joy did not get smaller, it’s just located in different places. Sometimes when people ask how I spent my weekend and I say, “I watched my plants grow,” they think that is a synonym for being bored. But I really did watch my plants grow. They are resilient and tenacious and beautiful, and so many times I’ve been sure that they were finally dead, but a few days later there is new life growing. “Don’t count me out,” my plants keep saying. Noticing my plants brings me joy.

My brother’s family gave me a crystal Christmas ornament this year. I hung it in my window and as the sun sets, it becomes a prism that sends dozens of rainbows around my apartment. I look to see which is the brightest and where is the oddest place to find a rainbow. So far, it’s when the rainbows color the black and white pictures on my wall. It brings me joy.

I love to walk barefoot. This winter, I injured my foot, and now I have to wear shoes all the time. It’s possible that walking barefoot caused the injury and that I shouldn’t do that again. When the doctor told me, I thought, “What?! Walking barefoot is one of the few things I love that I can still do!” It took a week of resentment, but soon enough, I remembered the post-it and what I said I had learned from it. Yes, I had to remind myself that I liked being barefoot because it brings me joy – but it’s the feeling I want, not the being barefoot. And fortunately, joy is not limited to the things I know. Joy is everywhere, waiting to be found. It’s in the plants that were always in my house, but never brought me joy before. It’s with the people around me. It’s in the most ordinary places. It’s in things I have yet to discover.

Life can be large or small, I don’t have much control over that. My joy, however, has infinite possibilities.