Multiple Sclerosis / Spoonie Challenges / Writing journey

The Journey Begins

A lot of authors say they’ve been writing all their lives. I’m no exception. I wrote nonstop, pausing only for university. I barely had time to read unless it was a scientific journal.

After graduation I started submitting short stories. I even wrote a few novels. When the pile of rejections kept growing, I decided to give myself one year to publish something. Otherwise I’d quit. Then one summer day I was walking with a friend and I realized that my one year would be up the next day. No publications. No more writing.

I was sad at first, but also relieved. Now I was free to do all those other things that I couldn’t do before because of that pesky writing thing took up all my spare time. While trying to figure out what those ‘other things’ could be, someone passed us with a quick, “Hi!” then kept going. Sure enough, I came up with a full story idea.

For the first time in my life I understood how naïve I’d been, thinking I’d spent all those years writing because I wanted to. I mean, I can hold my breath, but eventually I have to start breathing again. Writing was also a critical part of my life.

So, I never stopped and eventually began publishing short stories. Admittedly, a few were in some very obscure magazines.

While working full time and starting a family, I still managed to allocate a portion of my precious time for writing. I had endless enthusiasm and boundless energy. It seemed like nothing could stop me.

Then several years ago, while working as a research technologist—a highly physical job—I was diagnosed with MS.

Although not using a cane yet, eventually I would. Somehow I couldn’t picture myself pulling a gas cylinder cart with one hand while holding a cane in the other. Office work was an option. However, I’d one tried an assignment editing scientific reports. It felt like a slow death and I couldn’t wait to get back to the lab.

One common symptom of MS is fatigue. By the time I got home at the end of the day, I didn’t have any energy reserves left for writing—or anything else.

Was this going to be my life? Working all day, then coming home to have my child watch me nap? I decided to take medical retirement. Now all that energy could be used to enjoy time with my family. Best of all I could write full time.

It didn’t quite start out that way. Along with the physical exhaustion there is also the mental fatigue. Instead of writing all day I found myself just lying around watching the paint peel. The more I got upset because I wasn’t doing anything, the higher my stress levels went. Then it got harder to concentrate, which made it impossible to even consider writing.

Somewhere in that escalating cycle of stress, I had a thought. A very simple and obvious one.

TheJourneyBeginsI would just accept it. So what if I couldn’t write today? I’d write tomorrow, or the next. I couldn’t believe how that tiny thought helped. I actually felt myself relax. My ability to concentrate recovered faster than I could have imagined. I wrote a few paragraphs first, then several pages, then much more. It didn’t take long before I was able to keep most of those mental fatigue days at bay.

As far as my physical strength, I can be on the go for a couple of weeks before fatigue creeps in. One or two days of rest will usually recharge my batteries, then I’m off again.

Occasionally it’s hard to get re-started when all I want to do is stay home and cuddle with my dog. That’s when I have to get tough with myself. I pack up my laptop and hang out at the library. Other times I prefer the noise and activity of a coffee shop, where I can easily block out the surrounding noise. It feels like being inside a peaceful cocoon. Once in a while I’ll peek out to see what’s happening, then go back to my little universe and my characters.

There’s an old saying, that you must ‘suffer for your art’. Anyone that has stared at a blank page or struggled with a final edit, won’t argue with that.

It doesn’t mean you have to suffer needlessly. Sometimes I just can’t find a way to trick myself out of being tired. That’s when I give in and have a nap. Whatever it takes to keep writing.

I must be doing something right, because I got a novel out of it. And another one is on the way.


MadonaSkaff-KorenWith a degree in biology, Madona Skaff-Koren somehow ended up in mining research. Her scientific background has always inspired her science fiction stories and frequently sneaks into her mysteries.

She is the author of Journey of a Thousand Steps, a mystery novel about a marathon runner disabled by MS who turns sleuth in order to find her missing friend. She has published several mystery and science fiction short stories including the Arthur Ellis Award finalist First Impressions, which appeared in The Whole She-Bang 2.
Check out her website for more information and follow her on Facebook and Twitter.  See the book trailer for her novel here.

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