Back here in the real world, there's this old adage that writers, like most artists, suffer for their craft. Boy, howdy, I can attest to this.
In 2015, I was laid off from a job I'd held for thirteen years, a job that afforded many liberties like working from home when needed, flex time when needed, and an on-site fitness center and chiropractor that I used regularly. It also offered me a 30-minute commute.
I was lucky; I found a new job in a few weeks, but the new job's commute was an hour and 30 minutes.
It had none of the flexibility I'd grown used to either.
In May of that year, I had this bizarre swelling in my hands. A finger would randomly swell to three times its normal size and the pain is utterly indescribable. At one point, I sobbed to my husband to take the hedge clippers and lop it off. I couldn't so much as tap a cell phone with the entire hand, let alone the swollen finger.
|Brooklyn, 2015 - CLMP Firecracker Award for SOME BOYS along with my then-editor, Aubrey Poole. This was the first flare I had -- I was unable to straighten my arm and so, it bent awkwardly. Not shown is the swollen finger on my other hand.|
It happened three times, to three different fingers. I'd been to an emergency room, had x-rays and blood tests and enough medication to open a pharmacy. The diagnosis is psoriatic arthritis. It's disfiguring, it's excrutiating, it's permanent, and it's a vicious cycle. I have to take meds to manage the flare-ups, manage the rash, but the meds cause side effects like osteoporosis and weight gain and insomnia so I have to take more meds to manage those. I frequently don't sleep at all and then have to drive that 90-minute commute, work all day, and commute back home.
In 2015, I didn't get much writing done. It took me months to figure out how to squeeze writing back into my new world order. I have to exercise because, as my rheumatologist says, "motion is the lotion" that keeps my joints lubricated. But it hurts! Oh, it hurts. I have to lose weight to decrease the burden on my joints, but let's face it -- writing is a sedentary occupation. Thanks to the steroids, I'm now shopping for plus sizes and this just KILLS me.
So... I didn't write. I gave it up for months. And an interesting thing happened. I felt like I'd been lobotomized, like half of me was missing. At first, I blamed this on all the new meds and the disease. But then I realized it was ME. I'd let it go when what I should have been doing was clinging to writing like a piece of driftwood after the boat sinks.
I'm fighting back now. Instead of saying, "I can't! It hurts." I say, "I will. I'll feel better."
I began waking up at 5:45 and getting to work around 7:30, before traffic begins to get awful. That hour earlier cut my morning commute down to about 40 minutes instead of 90. I can't do much about the evening commute so I endure it. With the office empty, I have a leisurely breakfast so I can take my meds on a full stomach and then write until 9 AM.
|The medication wallet I must now carry.|
At lunch time, I walk. If the weather is bad, I may write some more. When I finally get home, it's a victory when I do so before 6:30. I do my physical therapy exercises -- stretching is critical for me. Dinner. Laundry. Dishes. I don't watch much TV now. When I sit down, it's for social media tasks, maybe to re-read what I wrote that day and plan tomorrow.
For a long time, I was bitter about no longer being able to write 1500 or 2000 words a day. Now, a good writing day is 300 words or so. I had to adjust my attitude on a lot of things -- like giving up sugar. I LOVE chocolate. Chocolate is like a religion for me. Giving that up -- well, let's just say I thought about the pain and wondered if I could live with another round of prednisone -- it wasn't easy, but I decided sugar had to go.
(Still haven't lost weight, BTW)
So, we're in 2018. It's 3 years and I haven't had a flare up! I've had lots of other issues but I manage them as they strike. I've learned how to keep writing on the days when even my hair hurts (I have psoriatic spots on my scalp.)
- I use dictation software.
- I have my son edit for me.
- I plot and research rather than sit 'butt-in-chair' on high-pain days or no-sleep nights because let me tell you, writing on no sleep is like drunk-dialing somebody. Nobody wants to see that!
- I stop beating myself up over the 200 word count days. I write every day, even when I'm fried, so I don't 'fall out of the habit.' It may not be actual word-count writing (could be plotting, etc.) but it's time on the WIP.
- When I have days to devote to my writing, I'm careful not to spend hours sitting. I set reminders to get up, move around, exercise so my back doesn't spasm and undo my progress.
- I don't make decisions on days where I'm going without sleep.
- I stay off social media on the days where I'm going without sleep.
In 2017, I wrote 2 full-length books and didn't die. This was a personal goal I'd set and I'm so proud I managed to achieve it. I have the same goal for 2018, but we're in June and....nothing. I have no ideas. Usually, panic sets in around now, but I'm just going with the flow.
I figure my body is telling me "Rest." So I'm researching some back story for one kernel of an idea, to see if it germinates into a full story.
But I'm not giving up. Writing is part of who and what I am. I do what I have to so I can keep this disease from stealing more of me than it already has.