CFIDS Association Board chairman-elect Jennie Spotila shares a turning point in her journey with CFS.

Defining Moments:Taking Steps
By Jennie Spotila

How does one moment define a life with CFS? There have been so many significant moments in my 13-year journey with this illness. Should I write about that day I fell ill, some time after morning coffee but before lunch? Or perhaps the moment when my mother, fighting breast cancer, and I looked in each other’s eyes and recognized that we understood each other in a new way? What about how I felt as I sat in the audience at the National Press Club launch of the CFS public awareness campaign? Or the excitement of attending my first meeting as a member of the CFIDS Association’s Board of Directors? The problem is that none of these events, significant as they are, define my entire experience of living with CFS.

So I choose July 23, 2007. On that Monday, I walked to the end of my driveway, turned left and walked to the corner of my block for the first time in more than 10 years.

I have been working with a talented physical therapist for 18 months, and walking to the corner was a fuzzy dream when we began. I’ve worked with other physical therapists over the years, including one who literally shrugged his shoulders at my body’s failure to respond to therapy. In February 2006, my goal was to improve my flexibility and see where that took me. The idea of walking . . . down my street! . . . alone! . . . without a cane did not occur to me then. But there I was on July 23, my dog heeling beside me while furiously wagging his tail, walking to the corner.

For most of my CFS life, I have raged and banged against the bars of the cage. Slowly and painfully, I accepted small admissions of my disability. First, I applied for a handicapped-parking placard. Then I started using a cane for support. I began renting electric scooters on the rare occasions my husband and I could travel. And finally, I asked my doctor to prescribe a manual wheelchair so my husband could push me to the movies or around a mall. This downward spiral of disability, immobility and dependence dragged me ever lower, albeit kicking and screaming in protest and anger, in the pit of illness.

I did not choose CFS, and I did not invite this menacing intruder into my life. She struck without warning, encircling me with triple tentacles of pain, fatigue, and brain fog. I have fought (with valor, I hope) the symptoms and the losses and the limitations. It has always appeared to me that I have not won many of those battles, as friends disappeared and new medications joined my bedside pharmacy. But I remain steadfast in my belief that CFS is a guest, not a permanent resident, in my life. How does one make peace with an unwelcome guest who is determined to stay awhile?

I have come to the gradual realization, painfully incremental in its arrival, that I define these moments of the CFS experience. These moments do not define me. I am not CFS. I am not my illness. When I gave in to the necessity of owning a wheelchair, I defined that moment as a positive adaptation to keep me out in the world, at least a little bit. When my mother was diagnosed with breast cancer, I defined that moment as a new, shared experience of illness.

CFS inserted herself into my life, but she does not rule it. I will not let her. I do not succumb to her whirlpool of disability and despair. I do not lose hope. I do not give up. I strive against CFS and her tentacles every day. This is the force that produced my victory on July 23. Had I allowed CFS to control me, to direct my intentions, it is unlikely that I could have walked to the corner that day.  

As I walk past my neighbors’ houses, examining their landscaping up close rather than from a moving car, I am certain they think me odd. First I walked to the telephone pole before returning home. Four months later, I walked to the corner and then turned back. They do not know or understand CFS. They would not see my reaching the corner as an achievement. Perhaps someone was looking out his window on July 23 and saw me take a picture of my feet on the corner. That must have looked peculiar. It does not matter. CFS knows the truth. She knows that I have slipped out of another grasping tentacle, if only for a moment.

Several years ago, I was asked to identify a theme song for myself. The assignment was to find lyrics that defined or encapsulated me in some way. I chose a song that says, “This time is whatever I want it to mean . . . this time is fine just as it is.” On my strongest days, like the day I reached the corner, I find it very easy to access this feeling of acceptance and power. July 23 was fine, since I reached the corner. Fast forward to several weeks later, when I have spent three days in a haze of uncontrolled pain, and it’s not so simple to say that a bad day is whatever I want it to mean. Moment by moment, I wrestle CFS. Sometimes, she throws me to the mat and sits on my chest. She laughs at me: “Is this fine as it is?” Sometimes, I have to lie there on the mat for a while.

But I get up, and I walk. Just a few steps at first, just to the telephone pole. But now I’m walking to the corner. Some day, I’ll walk to a place where the slimy tentacles of CFS cannot reach me anymore.

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If this is what memories are made of, gonna like what I see.
Everything I ever took for granted, I’m gonna let it be.
Step through every shade of the color you bring.
This time, this time, this time is whatever I want it to mean.
Everything and nothing is as sacred as we want it to be.
When it’s real, make it real. Compared to what?
It’s like living in the middle of the ocean with no future, no past.
Everything that’s good about now might just glide right past.
I’m stepping through brilliant shades of the color you bring.
This time, this time, this time is fine just as it is.

 - Beth Orton, Central Reservation

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Read more Defining Moments Essays by writers close to this illness.

“My Hardy Stock” by Ruth Sloven, author of "The Mother Ring."

"Main Morning" by Kathy Rabin, storyteller and participant in the traveling CFS photo exhibit.  

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