How I Transformed My Loneliness Into Strength While On Medical Leave


I have chronic pain due to erythromelalgia (EM) and complex regional pain syndrome (CRPS). Walking hurts. Each step usually feels something like moving across hot coals. My ankles feel something akin to being smashed with a sledgehammer, and my toes feel like someone is shoving red-hot pins into them. Meanwhile, my legs often shake because of pain and weakness.

The relentless suffering keeps me mostly confined to home, on the couch with my feet up, by myself for countless hours. My wife works, my kids go to school, and I lay on the couch.

Alone.

I have been on medical leave from my teaching position for several months. I have grown accustomed to loneliness and do what I can to thwart it. Reading is difficult these days. My meds exacerbate the brain fog and short attention span caused by my rare disease. On most days, I listen to music, watch some television, and scroll through the internet. Audiobooks and podcasts help. Social media has been a way to connect with other people and combat the loneliness; it gets me “out of the house” if only in my mind.

Long hours of solitary time affects my mental health. Not being able to work at my teaching job aches in my heart. I am accustomed to seeing my students, their parents, and my colleagues every day. Before my disability, some days in the classroom felt like weeks because so much happens each day. Now some days at home feel like weeks
because of all that does not happen.

I do what I can around the house, but too much movement typically causes flare-ups. Some flare-ups have sent me to the emergency room, and others have made me nearly back out. So I have to guard against pushing myself too hard. Thankfully, I have an understanding family. I do as much housework as I can — a little dusting, some laundry, or the dishes when I’m able. My wife typically does the grocery shopping, and my teenage son has gotten in on the act now that our local store has an app that lets you shop online. This has made our family life significantly easier.

Occasionally I have to get out of the house for my mental health. I know I will pay a physical price when I return home, but sometimes I just need to breathe the air someplace else. I long to see other people, get into a different environment, and even hear some cheesy background music.

Yesterday was one of those days. My wife had taken our daughter on a college visit trip, and my son was at school. We needed a few items from the grocery store, and I felt halfway decent so I decided to take a chance. I could have used the app, but I wanted to stand upright and spend time somewhere besides my couch. I made up my mind to go to the store, limit my steps, and get right back home. Before I left, I took my meds to head off any flare-ups.

I always limit my driving, and the store is less than five minutes away. When I arrived, all of the disability parking spots were taken. I hunted for the nearest parking space and hobbled into the supermarket with my walnut cane supporting me. I picked out a personal-size cart, used it as a walker, and spent about 15 minutes finding my carrots, spinach, bread, pasta and frozen pizza.

I could have gotten a motorized scooter to zip down the aisles, but I really wanted to walk. Maybe it was my pride — or my vanity.  About halfway through the excursion, I remembered how much walking is involved at the store. It’s more like a food labyrinth than a pleasant shopping experience.

By the time I reached the checkout, my feet were on fire and my legs felt like someone had tied cement blocks to them. I leaned on my de facto walker as I made my way back to my car. I noticed a dozen or so people in the parking lot, including store employees, and several of them clearly observed me. I felt exposed, alone, weak, appearing different and needy. It was one of the few times I have ever felt the unbearable weight of people staring at me as a disabled person shuffling along.

Meanwhile, I scanned the parking lot for a cart return. And of course, there was not one anywhere near my car. The closest return was beside the store’s entrance.

I stood alone and looked at the door. Then at my cart. Then at the door again. For a moment, I considered leaving the cart in the parking lot. But this would have taken up a parking place for another shopper. I hate that guilty feeling, so I gathered my good conscience, the cart, and my courage — because every step with chronic pain calls for courage. Then I hobbled toward the door.

Up until this point, I had simply tried to power my way through. I had forced myself to drive to the store, lumber through the aisles, and push my way back to the car. Although I was by myself in all of this, I was not lonely. My pride and self-esteem accompanied me. I felt painfully proud about my ability to make myself do something that I normally do not attempt.

But now as I mentally measured the steps from the parking lot to the front door, I felt isolated from all of humanity. It might sound foolish. Why not just leave the cart or ask one of the store’s employees strolling through the parking lot to take it for me?

I do not know. I know they saw me, and I was clearly in some distress. But they kept walking as they stared at me. Who knows why they did not ask to help? They could have been busy, or perhaps they did not want to insult me and my only companion up to this point: my pride.

So I dropped my head and ambled toward the cart return and back to my car. It took nearly 200 steps. I drove home in agony but made it safely. After I made it home, I put on my pajama pants and resumed my usual position, reclining on the couch with my legs up.

My pride is gone. I remained truly alone — deeply alone —for a few hours until my family returned from their daily adventures. Maybe I need a new sense of pride, one that does not attempt to be someone I am not. Chronic pain and disease have made me into a different person, one who needs help standing, walking, driving, and going to the store. That is who I am now.

But I am also a person who overcomes intense suffering each day knowing that I will face the same challenges tomorrow. Perhaps that is enough. Maybe I can be proud of staying in the daily struggle, a transformed pride that empowers me to accept myself for myself regardless of my ability to achieve anything at all.

Getty Image by Kwangmoozaa


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