Jennie Spotila is a 2-time alum of the Creative Focus Workshop who has consistently knocked me out with her insight, collegiality, and…energy. Which is interesting, since she suffers from severe chronic illness.
As I got to know Jennie, her specific perspective on how I teach creative focus proved to be immensely helpful to me in streamlining and becoming more clear on the value of this work for people with a whole array of less-than-ideal life circumstances.
As she transitioned from juggling way too many commitments (which even led her to endanger her health at times) to actually digging into writing her long-dreamed-of book, she helped others in her CFW cohort understand and grapple with whatever physical disabilities they had. She’s inspiring without insipidity, tough and empathetic.
I realized I wanted to bring her wisdom and insights to the larger Creative Focus community. Thus the article that follows.
Whether or not you suffer from chronic illness yourself, as Jennie points out, everyone has to deal with sickness or physical disability some of the time.
Not only that, all FIVE of her steps to Creative Focus are also exactly what anyone who’s not sick should start with.
There is something irresistibly romantic about the image of the tubercular artist, toiling away in isolated brilliance, committing her genius to paper until fame—and/or death—finally rescues her from the garret.
For twenty-three years, I have lived with Myalgic Encephalomyelitis, a chronic, disabling disease that affects multiple systems in my body. Every day, I contend with widespread pain, brain fog, low blood pressure, and a variety of other symptoms. Worst of all is the exacerbation of all my symptoms after even mild physical or cognitive exertion.
Most days, the pain and exhaustion make me feel like I am wearing a suit of armor made of concrete.
Stringing words together can be as swift and efficient a task as building a wall out of jellyfish.
It is very easy to stray outside my limits. If I do three loads of laundry instead of two, or if I spend an extra twenty minutes organizing paperwork, or if I have to wait in a long line at the pharmacy, then I pay for it with increased pain, dizziness, and muddled thinking.
Keep all that in mind as I tell you: All my life, I’ve wanted to write a book.
Living with a chronic illness hasn’t changed that. I’ve always had book ideas, and wrote stories from grade school (when I wrote a book about Snuffleupagus) through college. It wasn’t until I went to law school that I pushed my creative writing to the back burner while I did my “real” work.
My doctor diagnosed me with ME but said that, while there was no treatment, I should feel better in a year or so. But after five years of incapacitating illness, my doctor told me that I should no longer expect to recover or even feel much better.
I was thirty-one years old, housebound, unable to drive myself to appointments or errands, unable to even walk to the corner. Nonetheless, I told myself it was time to get serious: I would write my book by age thirty-five.
There always seemed to be something more important to spend my energy on. I read books about writing. I organized my files. I took a one-day writing seminar. I read more books about writing.
Most books I’ve read about doing your creative work say it’s just a matter of making the time.
Set a daily word count goal!
Stop watching TV and use that time to paint!
The one thing you have when you are housebound with illness is loads of unstructured time. The problem is that most of the time, you don’t have the energy or focus to do the very thing you always wished you had time to do.
You may have the flu, or a broken limb, or surgery. Then there are longer-term health problems like chemotherapy or multiple sclerosis or depression. Our bodies are wondrously frail…
I thought I did.
The writing that matters most to me takes extraordinary concentration and focus. It’s much more difficult than most of my activist work.
I might have continued to believe that my personal creative work was out of reach ad infinitum if I had not taken Jessica’s Creative Focus Workshop.
Jessica challenged me by saying no.
She didn’t give me canned sympathy for my disability and let me off the hook. Jessica insisted over and over that I could do my creative work.
The solutions were there, she said. I just had to find them.
Here are the top five solutions I’m using to get my Creative Focus on.
No matter what your circumstances or capacity, getting your creative work done is a conscious choice. This is the fundamental and most difficult Creative Focus principle to understand and internalize.
We all make countless (often unconscious) choices every day about how to spend our time: do we binge watch the Great British Baking Show or sketch a comic page? It’s easy to see that as a choice, right? If you are serious about making that comic, then choose it over TV, and you’ll be fine.
But for people going through a period of illness, fewer options are on the table. If you are in too much pain to grasp a pencil, the Great British Baking Show may be all you can do.
Here’s the tricky part though: recognizing the difference between a barrier and a choice.
I fell deep into this trap. I told myself, “I can’t write a book. I don’t have the stamina or brain power for that.” So I became an activist for more ME research and better clinical care. I served on a board of directors. I started writing short blog posts and then longer commentary pieces. That meant I was, in fact, writing. I was simply choosing activism over my creative work. And when dealing with a radically reduced baseline of stamina, the choice between the two is stark.
Once I saw what I was doing, Jessica’s approach clicked for me. There are many days when the basic requirement of showering and warming up dinner is all I can manage, and my creative work sits behind what feels like a concrete barrier.
But there are days when I do have the capacity to write a little bit, and then I have to choose whether that capacity goes to my writing or my activism.
Despite the fact that being disabled sucks, I am still responsible for that choice.
Illness can affect you in so many ways. Surgery or a cast may limit your mobility. Recovery from traumatic brain injury can limit your ability to look at a screen or read. During chemotherapy, your ability to function will fluctuate over the course of each treatment cycle. Chronic illness will knock you on your butt with exhaustion and other symptoms, and may also follow a relapsing-remitting course.
Before you can do creative work, triage your basic needs such as showering, eating, paying bills, and laundry. When I was recovering from surgery this summer, there were days when I couldn’t get as far as the shower. Now that I’m back to my baseline of functionality, I can get through those basic activities pretty smoothly most days.
Also, spend some energy on your relationships, whether it’s the family you live with or online friends. Maintaining healthy connections is a fundamental building block of health.
Which single activity will I choose to spend my energy on today?
The choice has to be focused on (and reflect) my true priorities.
Laser focus also dictates cutting any and all corners you can.
When you are sick, your energy is a priceless commodity. Be as efficient with it as possible.
Creative work can feel daunting to anyone. Many (most?) of us have big ideas but then flail about because we’re scared by the scope of the project.
I am currently writing a memoir of my activism, and I am overwhelmed by how much I want to say. It is so much easier to knock out a short blog post or file all the papers on my desk. That gives me a quick hit of “I accomplished something productive,” but it doesn’t get me closer to writing the book.
Most of the time, I don’t see how I can write a book because it is such a massive project. For years, I thought the solution was the ubiquitous daily word count goal. I just had to discipline myself to write 250 or 500 words a day, and bingo.
But many days, I cannot write those words. Even if I get through the triage and focus step I discussed above, I still cannot write those words.
What I can do though is jot down some notes.
I can sketch out the timeline of my activism.
I can read through old blog posts for ideas.
Maybe I can write a paragraph.
Can you sketch a character’s face?
Can you sew a few seams on a costume?
Can you find a guest to invite on your podcast?
I find it helps to have a variety of next steps in mind, so I can choose the action item based on how sick I am on any given day.
One of the exercises for Creative Focus that Jessica recommends is mapping out your ideal week and then tracking what happens each day. This will give you a snapshot of the difference between what you say you want to do and what you actually do. This exercise really opened my eyes to the choices I make, and now I do this every week.
Creating my ideal week is a helpful reality check. Once I have blocked out doctor appointments (including the travel time to and fro), administrative time to pay bills and order groceries, and rest time, there isn’t as much left as I imagine there should be.
But the big reality check comes when I track what happens over the course of the week. I can see where, instead of doing some of those admin tasks, I chose to talk to a friend on the phone, which then sapped the energy I needed for writing time.
Tracking these choices over many weeks showed me that I consistently minimize my rest time, and that medical stuff takes up way more time then I think it should.
These notes are helping me to recalibrate my choices so that they reflect my priorities. It also helps me see that most of the time I am doing the best that I can.
A four-hour wait at my surgeon’s office (for real!) meant that I couldn’t do anything beyond basic daily maintenance for a week. Seeing that reflected in my notes short-circuited my usual self-blame for not getting any writing done.
The final key piece of the Creative Focus method when you are sick (and even when you’re well) is compassion for yourself. Make your choices consciously, and then be OK with them.
Being sick all the time is a drag, but honestly, I’m used to the symptoms. Muscle pain, dizziness, and brain fog is just a normal Tuesday.
But I have not gotten used to the limitations imposed by illness.
After twenty-three years, it still pisses me off that I need a two-hour nap after a friend comes over for coffee.
In law school, I could study twelve hours a day every day. A short nap would put me back to rights.
Now, writing a few hundred words in this essay will be my maximum effort for the day.
But I still want to write the way I used to. And every day that I do not write that way is a reminder that I cannot. It’s hard to see that plainly, and without self-blame.
The Creative Focus Workshop helped me understand that I can’t wait until my old brain comes back to do my creative work. I have to find ways to do it with the brain and limitations I have right now.
Carrying disappointment and self-criticism just adds to the emotional load of living with chronic illness. I feel better (and write better) when I can focus on making choices that reflect my priorities and that safeguard my health.
We all have times of reduced capacity due to acute or chronic illness or other health problems. Creativity is part of our life force, though. Persisting in your creative work is an important part of recovery, or persisting despite the absence of recovery.
I think this is why I never gave up on my dream to write a book. It’s part of who I am, and when my disease stripped away most other parts of my life, I needed to hold on to that dream.
The Creative Focus Workshop helped me figure out how I could start putting flesh on the bones of my writing aspirations.
How will you know if you can make your creative work during a period of illness? How will you know if you can turn your creative dreams into reality?
There is no magic unicorn coming to tell you the answer.
Jennifer Spotila lives in southeastern Pennsylvania with her husband, dog, and laptop. She is currently obsessed with the Great British Baking Show, knitting, and writing her memoir. No, really! She is actually writing it.
While you’re waiting for Jennie’s book, check out her blog: occupyme.net. Find her @knittahknits on Twitter, and @knittah on Instagram.
November 7, 2017 at 10:18 pm
Nice work, Jennie. There are a lot of us out there with chronic illnesses who are trying to write through the challenges the illnesses bring. So thank you for your clear, smart and creative approach to this!
November 8, 2017 at 2:41 am
Wow! This article is just for ME! Thanks you Jennie, I really needed this. I have had CFS for twenty plus years, and there is so much I want to do. As I read your article it was ringing so many bells for me. An inspiration! I’m putting a copy of this article on my wall. All the best, from Jude in Australia.