What a Dolly Parton Concert Taught Me About Living With Chronic Illness
“You’ll feel better after seeing Dolly Parton. I promise.” These words from a friend were the deciding factor in spending some birthday money on an inexpensive ticket to one of Dolly Parton’s recent concerts. As I rode the escalator to the upper section of the theater, with my germ mask on and anxiety flickering through my brain from the overwhelming noise and motion of the crowd, I had my doubts about that.
I’ve never been a country music fan at all, but Dolly is Dolly. Like many people, I grew up hearing her music and I watched some of her films as a kid in the ’80s. As an adult, I’ve really admired her Imagination Library reading program for children, as well as her assertiveness and creativity. This article isn’t a concert review, but in case you’re wondering: her voice was beautiful and clear as a bell, she played multiple instruments and spun wonderful stories about her life and family and by the end of the show I had a huge smile on my face.
And in the middle of the concert she did something that stunned me: she sat down.
True to form, she didn’t have any old chair; she had a charming little porch set that magically appeared onstage. I was too far away to see if it was bedazzled, but I wouldn’t have been surprised. She sat on that porch and captivated the audience as she sang some of her most beloved numbers, including “Coat of Many Colors.”
Dolly sat down a few more times during the concert. Each new seating area was stylish and integrated seamlessly into the set. She was slightly under the weather, and told the audience she was sorry she had to use a tissue onstage. However, she never apologized for sitting down, and that was important. When she wanted to sit, she damn well did so, in all her rhinestoned glory, and held court from that porch or church pew.
As silly as it might seem, this was a huge thing for me. I have a very different life than Dolly Parton, but I’m in a world that wants me to stand…and doesn’t always understand when I can’t.
I’ve been dealing with this issue since I was in my early 20s. At first it was intermittent and due to orthopedic problems and injuries. However, I always eventually recovered, more or less. I worked at jobs where I had to do a fair amount of standing and spend a lot of time going up and down long flights of stairs. At some point, though, as my various genetic and autoimmune conditions began to truly take hold and my joints wore down more, I stopped bouncing back. I had to stop going to standing-room only events and noticed I was looking for seats more often.
It eventually interfered with work. A few years before I fell seriously ill, we had a meeting for professional development at my workplace. Unfortunately, we were standing for the entire discussion. After a little while I began to really hurt, so I took a seat on a nearby bench, where I was still close enough to hear what was being said. I’d only been down for a few minutes when one of my managers quietly ordered me to stand up again. Not wanting to argue in the middle of the lecture, in front of my colleagues, I complied. By the end of the half-hour presentation my hips and knees had locked and I was in absolute agony. The next day I spoke to HR, and was finally granted permission to sit down when I needed to do so.
Nowadays I begin to hurt after a few minutes of standing, and I really can’t do more than 10 or 15 minutes without severe pain. On a bad day, it’s much less than that. I have to keep shifting my weight from one foot to the other to try to minimize the pain, too. When I sit down, I constantly fidget and sometimes need to stand up again for a second to keep my hips and knees from locking, like a human Jack-in-the-Box. I still try to exercise and dance every now and again – for some reason, motion doesn’t hurt exactly the same way standing does – but it’s far less often and less intense than before, due to the pain and exhaustion left in its wake. My previous life, in which I walked a 5K six days a week, did flying trapeze and could dance for hours, is long gone.
Not everyone understands this, because society is all about standing right now. In an article for NPR, writer Angus Chen noted one of the recent catchphrases: “sitting is the new smoking.” Standing desks are promoted as a way to keep fit in the office, and there have been many media articles about how sitting will supposedly kill us. Nobody wants to be known as a couch potato. We’re supposed to be up and on our feet, and if we don’t “look sick” or as though we need that seat, we’re sometimes shamed if we sit down.
I know I’ve irritated some of my friends when I’ve tried to explain I can no longer do standing room-only events. People have raised their eyebrows when, in lieu of another place to sit, I’ve plunked myself down on the floor or leaned against walls. I’ve heard anecdote after anecdote about other people with disabilities or chronic illnesses who have been on the receiving end of nasty remarks or comments when they’ve needed to sit down or use a wheelchair or scooter.
Several years ago, before I became ill, a relative who also has some chronic health issues came to visit me. She knew she would not be able to walk around and stand in lines at my favorite theme park, so we rented an ECV (electric convenience vehicle, or scooter) for her. She was worried about people’s reactions to it. And I wanted to tell her that her worry was misplaced, except for the fact that I’d overheard snide remarks about ECV users from other guests at that very theme park. Luckily, most of the people with whom we interacted were lovely. Still, the fact that she would even need to worry about people’s reactions to using an ECV – and that it was almost enough to deter her from going to the theme park at all – really bothered me.
It shouldn’t be so hard. If you need to sit, for whatever reason, you should be able to do so without worrying. Nobody should be subjected to irritation, insults, anger or derision for taking care of themselves and doing what they need to do.
The next time anyone gives me drama about sitting down or bowing out of a standing room-only event, I’m just going to remember Dolly. What would Dolly do? She’d probably smile graciously, keep singing her heart out in all her rhinestoned finery and completely ignore those criticisms. You do what you need to do to look after yourself. That’s something I constantly tell myself, and Dolly helped remind me of it.
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