Alissa Lukara has gone from a life of activity, to a life of illness, to a life of healing. Her experience led her to publish a memoir.
Editor’s Note: Personal stories published in the CFIDSLink and CFIDS Chronicle represent the individual experiences of people within the CFS community. Some stories include the authors’ personal views on factors they believe may have helped cause their illness—or factors/treatments that may have improved their condition. These stories do not reflect the position of the CFIDS Association of America, but rather are an expression of the individuals who write them.
We invite you to read other personal stories from the CFIDSLink and the CFIDS Chronicle, linked to at the bottom of this page.
The Power of Embracing All of Life
by Alissa Lukara
Based on excerpts from her memoir, Riding Grace: A Triumph of the Soul
Before December 1985, I was a "doer". I did things. I worked. I wrote. I socialized. I interacted. I thought. I hiked. I read. I traveled. I went to cultural events. I had goals and dreams—most of which involved doing.
I loved to dance. I’d be on the dance floor, and stories would tell themselves in the movements of my body. It was my soul expressing itself, giving my body a way to connect with its life force and rhythm. I loved my body—loved living actively in it.
But, on the darkest day of the year, I woke up feeling as if my very life force had sprung a leak. The body I counted on, took for granted as my partner in doing, stopped cooperating. It had been overrun by a chronic illness, eventually diagnosed as chronic fatigue syndrome (CFS).
For most of the next 12 years, I became primarily a “be-er.” Doing was beyond me. I lived in what I called the gray zone, a monochromatic existence. My companions in this daily drama were the several pages worth of symptoms that comprised CFS, most notably debilitating fatigue and loss of concentration.
A famous CFS doctor once said that comparing a healthy person’s fatigue to that of a person with CFS was like comparing a wind gust to a hurricane. I couldn’t work or read more than 15 minutes at a time. Sometimes in the middle of conversations I’d find myself suddenly unable to comprehend people’s words or remember what I’d done an hour before. At one point I became so environmentally sensitive that I couldn’t stay outside in nature.
I also discovered that I’d been sexually abused as a child and read research suggesting that trauma from events like abuse and injury could contribute to serious physical illness—like CFS. I knew that for me the illness and abuse were linked, and hoped that healing the abuse wounds would eventually help me heal my body, too.
Believing in the mind/body/spirit connection, I saw both CFS and the abuse as giant wake-up calls to heal not only my body, but my life. As part of responding to that call and fully involving myself in my own healing, I engaged the be-er part of me. Here, old foundations stripped away, I slowed down and listened deeply to my own being. Even though I couldn’t do much in the outside world, I recreated myself as an explorer of my inner world—of consciousness and soul awareness, as an alchemist transmuting darkness into light.
The many lessons I learned while being helped me live as fully as possible—with or without the physical limitations of an illness. The most important of those lessons for me (and the most difficult) was to consent, to accept what is. My fear was that to say yes to all life—even illness or past abuse—was to resign myself to it, say it was okay that it happened, or to diminish its magnitude. The fear was that if I accepted it, I’d be giving up.
But none of this was true. Instead, truly embracing even CFS meant that I accepted all of myself. Instead of fighting with symptoms, judging them and feeling like their victim, I learned to surrender. Rather than pushing away difficult feelings—anger, grief, sadness and fear—I honored and loved my vulnerable, messy humanness. And at the same time, I did everything I could to get over the illness.
Acceptance on this scale, I found, was tantamount to choosing life and moving with the flow of life, rather than denying it. In fact, the more I consented to what was, the better I felt and the more things shifted on their own. New healing resources appeared. I felt more peaceful and had more insights about my next steps.
I saw that even my severely limited life, as a person dealing with CFS, was as valid and important as any part of my so-called productive life had been. I opened myself to trust in the ultimate goodness of life and the rightness of my own zigzag, bumpy path.
I discovered a wholeness, a spark of light that existed in me even in the midst of all that seemed shattering. That part was beyond CFS, fully healed even as the rest of my body raged with symptoms. I knew it was there. And I could always take a moment to close my eyes and feel it.
Accepting my life fully—the be-er and the doer—also allowed me to reclaim my creative writing voice, which had been silenced early on by the fear and shame surrounding the abuse. And the first book I was called to write was the journey of healing my body by healing the impact of sexual abuse on my life—how I had transcended it and reclaimed the fullness of my life.
Twelve hours after I made the commitment to write that book, in a workshop led by two healers, I had a spontaneous healing of both the CFS and the wounds of abuse. I said yes to my life—surrendered to what was, to my creative path and purpose—and I had a healing. I’ve been healthy ever since.
My writings became a memoir, Riding Grace: A Triumph of the Soul. In Riding Grace, I raised my voice, no longer silent, and told the story I’d been afraid to tell. Facing it opened me like a beautiful, fragrant red rose to the deepest parts of myself, and this act of deep acceptance has further healed and transformed me in ways I’d almost stopped daring to dream were possible. No longer a victim—or a survivor—of abuse or illness, I reclaimed that wholeness inside me and set the spark ablaze.
© 2007 Alissa Lukara. In part, excerpted from Riding Grace: A Triumph of the Soul (Silver Light Publications, March 2007).
Alissa Lukara is the author of Riding Grace: A Triumph of the Soul. She is also president and founder of Lifechallenges.org a nonprofit website that provides people with the self help tools they need to cope with and transcend adversity. A writer whose work has appeared in numerous publications, Alissa facilitates "Writing Grace—Writing as a Way to Transform Your Life" workshops by teleconference and in person. For more information, www.ridinggrace.com.
We invite you to read other personal stories, including these:
“Yesterday and Today” by Sharon Greenspan
“Postcard from the Edge” by Gina Kerner (from the Fall 2006 CFIDS Chronicle)
“My Personal Story” by Jennifer Warner
“Back to School for the Child with CFS” by Shanon McQuown
“Falling for a Person with CFS” by Sam Oldham
If you have a story to share about your experience with CFS, e-mail it to email@example.com with "Personal Stories" in the subject line.