Tuesday, May 5, 2020

Staying Positive During Quarantine

Like a lot of people with chronic illness, this quarantine is not my first rodeo.
I've been "grounded" before by severe bouts with chronic illness (systemic lupus, along with lupus nephritis, Sjogren's and Raynaud's).
Twice, it was severe enough to leave me completely bed-ridden for months.
I know a little about How to Quarantine.

Being cooped up doesn't have to be an endless sea of nothingness and depression.
We still have creativity and humor to keep our spirits up. And both of these traits nurture resilience. I believe that is in part because being creative gives us something to focus on besides everything that's not going well. And it can provide an outlet for emotion and self-expression, and even a sense of control.

In 2002, I was in the hospital with my kidneys failing, congestive heart failure, pleurisy, neuropathy- the lupus was raging out of control. They put me on 9 drugs and chemo to get it under control and I was getting really depressed from the chronic pain as well as being in the hospital and feeling defeated by lupus (again).

Then Saralyn, my silliest friend, came to visit me. She treated me just like things were normal, instead of awkwardly standing there not knowing what to say. She jumped from goofy topic to goofy topic until she got me to laugh. About maxi pads. And how annoying they are. It changed everything.

I stayed up late jotting ideas on scraps of paper, writing a really dumb song about how I hate maxi pads and how I can never find a normal box of pads- just weird ones. I was completely distracted from my pain and from the fact that I was in the hospital with 99 problems. The act of creation was an act of me reclaiming my sense of humor and a sense of control.

Now, that maxi pad song is not one that I share with the world, but it opened the floodgates. I spent hours every day for the next year, even as I was regaining my strength, writing about all the things that frustrated me (had plenty to pick from!) and I ended up writing an entire CD of humorous songs about surviving chronic illness. That CD went on to be played by a lot of radio stations and reaching a lot of other chronically ill patients. I got to pay it forward with the laughter. I took the gift Saralyn gave me and passed it on to my fellow patients.

And here we all are together, faced with a global challenge this time.
And I've been writing again. About wearing sweatpants, about trying to use Zoom, about cutting my husband's hair.

You don't need to be a professional to pick up a pen or create.
I encourage everyone to write, even if it's just for yourself. Or make something. Or find some "dad jokes" and get up and tell them to your family. Express yourself! Sometimes the best way to cheer yourself is to cheer someone else.




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