In October of 2012, I wrote a piece called “Confessions of a Sick Person
.” Fast forward almost a year and a half, and I have more to confess. Ten confessions then. Ten confessions now.
Some are lighthearted, some are not. It may not be in my best interests for the people in my life to read these confessions, but I offer them anyway because I feel as if most of them are on behalf of everyone who must live day in and day out with chronic pain and illness. So, here goes…
1. Even when I really want to see people, I’m relieved when they have to cancel.
The reason is simple: their cancelling also cancels the payback I’ll have to go through as a result of the visit. Because there’s not a day when I don’t feel sick (I call it “the flu without the fever”), I’m willing to pay the price so that I can be with other people sometimes. But, as I said, there’s always a sense of relief when I know I’ve saved my body from payback.
Last fall, I committed to a few nearby events so I could introduce people to my new book. One afternoon, as I was getting dressed to go to an event at my local bookstore, I found myself saying softly to my body, “I’m sorry for forcing you to do this.” I was taken aback by these words until I realized that, although I’d freely chosen to do this event, had the bookstore called and cancelled, I confess, I'd have been relieved.
2. I’m increasingly unable to distinguish nightshirts from going-out-in-public shirts and slippers from shoes.
My nightshirt: 9 bucks from Amazon
This can set me up for embarrassment. I have a nightshirt that, to me, looks nice enough to wear out. The problem is, it almost goes down to my knees so I'm sure that, to others, it looks like the nightshirt that it really is.
And recently, I bought some footwear online from L.L. Bean called “scuffs.” They sure looked like shoes to me, but the first time I wore them out, I was diplomatically told that I’d left the house in slippers. I’m left wondering two things: just what are “scuffs”? and, in my isolation, has a whole new language for clothes passed me by?
3. I don’t brush my dog’s teeth.
A dog that looks like Rusty, toothbrush ready
The vet impressed on me how important this was—even though none of the many dogs I had as a child ever had their teeth brushed. The thing is, some days it’s a big accomplishment just to brush my own teeth, so I’m afraid Rusty is on his own here.
4. Sometimes, I badly wish I were young again.
I’m not proud of this confession, but the fact is, when I was young, I wasn’t sick. On the other hand, it’s also true that when I was young, I was unhappy a lot of the time. I thought I should always be able to get my way, and when I didn’t, I felt cheated by life. Now that I’m older and (supposedly) wiser, I understand that life doesn’t always serve up what I want it to and that the key to happiness is making peace with the way things are, whether they’re to my liking or not. And so, I’m happier now than when I was young. I really am.
And yet, even knowing that if I were young again, I’d lose this acquired wisdom and thus be less happy than I am now, sometimes there’s no way around it: I wish I were young again. Young and not sick.
5. I no longer know what groceries cost.
I'm fortunate that my husband does all the grocery shopping. When he's out of town, he stocks up on food for me. He's been doing this for so many years that I rarely know what things cost.
Sometimes he playfully names an item and asks me what I think it costs: a quart of milk, a bunch of bananas, toilet paper. I was always way off the mark until I figured out a way to beat his game. I make a silent guess at what I think the item costs and then multiply that number by four. That usually gets me close.
6. Sometimes I wish my disability were visible, even if it meant that I'd be less functional than I already am.
It’s sad to have to confess to this desired trade-off: less functionality in exchange for not having to respond to “But you don’t look sick.” But there you have it.
7. I may have an unhealthy dependence on the internet… and I don’t care.
When my internet connection goes down, I'm immediately on edge. Then a light bulb goes on in my brain and I think: “No problem. I’ll just google ‘troubleshooting your internet connection.’” Then I realize I can’t google anything. Next, I think: “Well, at least I can email a friend in town and see if her internet is down too.” Then I realize I can’t email anybody.
This leads me to conclude that I may have an unhealthy dependence on the internet. This brief reflection is immediately followed by the thought: “I don’t care. Just get my internet up and running whoever or whatever you are that’s keeping me from being online. And I mean NOW!”
8. When I have a health problem not connected to my chronic illness, I usually hide it from others.
Why would I hide it? Because I don’t want anyone to think I’m a serial chronic illness-er (a phrase I just made up). It took me a long time to get some of the people in my life on board with the fact that I’m sick all the time. I don’t want to suddenly lay on them that I also have something like a pesky skin condition or recurring bladder infections. I fear they’d roll their eyes and silently think: “Another medical problem?” So, I leave well enough alone, but I confess that keeping things private in this way increases my sense of isolation.
9. While I don’t wish poor health on anyone, I sometimes want my book How to Be Sick to fall into the hands of a celebrity with health problems who would declare it to be the definitive book on living well with chronic pain and illness.
An embarrassing confession, this one. (Each of you may have your own version of it.) Although I don’t spend my time daydreaming about it, once in a while, the thought creeps in: “Since so many people say they love the book, why can’t Oprah say it? Or Dr. Phil? Or Dr. Oz?” (I’m not picky about celebrities on this matter.)
10. And finally, a repeat confession because it’s truer than ever: When I’m alone, my eating habits are fit only for my hound dog to see.
When I'm alone, I often lick the bowls or plates after I've eaten from them. Not only is there food to be had there, but every dish licked is a dish that's easier to wash.
Thanks for reading my confessions. If you’re in the mood to confess, please join the discussion below.
© 2014 Toni Bernhard www.tonibernhard.com
My most recent book is titled How to Wake Up: A Buddhist-Inspired Guide to Navigating Joy and Sorrow.
I'm also the author of the award-winning How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and their Caregivers.
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