I sliced my thumb open the other day. My hands were cleaning the crevices of a vegetable spiralizer, but my mind was on my grandmother in the hospital. When I came to my senses, I looked down and saw red blood gushing into the sink. In the few days since, I can see my thumb healing. New skin is growing. The pain is lessening. The gash is closing. The progress is visible. Like gazing into a body of crystal clear water, I can see what is happening.
My illness is not like the gash on my thumb. My doctor told me my recovery would be a marathon, but I never guessed it would take this long. Progress looks like two steps forward and three back. I improve by an inch, then slide back by a foot. I wish I could dive into my body the way I dive into a lake. What do my mitochondria and calcium channels and all the other scientific words I hear regarding my diagnosis but don’t fully understand look like? If only there was a diagnostic test that could show the improvements. When I think about these questions, I’m reminded of a muddy lake. Progress is a lot harder to see.
In some ways, I know I’m better. I no longer use a wheelchair when I leave the house. I can drive again. I work part-time. But sometimes I question if I really am healing. I don’t need a wheelchair, but I still have trouble walking long distances and standing for any length of time. I can drive around my city again, but I’m still not able to drive anywhere out of town. I’m working part-time, but it’s from home.
I never know when I’ll be reminded about the murkiness of my progress. Recently I was hanging out with two dear friends from college. Megan said to Karen, “I can’t believe your six-year wedding anniversary is coming up.” Outwardly, I said, “I know,” but inwardly my stomach dropped. My mind flashed back to the days before my best friend’s wedding. I remember calling her the week prior, barely able to utter words through sobs, “I can’t make it to your wedding. My doctor says I shouldn’t push it.” Hers was the first of many friends’ weddings I have missed over the last six years.
“Six years,” my mind screams. I silently trace each one. “You’ve come a long way since then.” I try to reassure myself, feeling the knot in my stomach spread to tightness in my chest.
“Have I though?” I respond to myself. “In six years, Karen has married, finished law school, fostered two kids, and started a career in a successful practice, and you had a hard time driving twenty minutes to get here today.”
My progress is painful to remember. When others were beginning careers and falling in love, I felt completely out of control, questioning my chances of survival. I look back and see progress by inches in a world that measures by miles. While others view progress by how far they’ve run that month or the new word their toddler said that week, my mind asks questions like, “Will I ever think back on my friend’s wedding and not be overcome with sadness? Will I ever be able to run again or travel out of the country or have kids?”
Progress is a regular theme on my own Facebook posts. “It’s so good to see you out!” a friend comments under one of my photos. “You are looking great!” another says. I do love when people celebrate my improvements. It is a big deal that I can get out. Just a few years ago, I could count on two hands the amount of times I left the house that entire year. I appreciate when people acknowledge that small deals to other people are big deals to me. But in other ways, I’m exhausted by it. How I look in a photo I post gives no explanation of how terrible I felt or how much I pushed myself to be at that particular gathering. I’m tired of the reminder that how I look and how I feel can still seem opposite all these years later. Sometimes those comments remind me of cheers from onlookers of a race. It’s easy for the person cheering to say how well the runner is doing, but all the runner can think about is how many miles left to the finish line.
Cover photo by Annie Spratt.