Ruth Sloven shares a recent defining moment in her 25-year journey with CFS.
"Defining Moments" Essay Series: Ruth Sloven
My Hardy Stock
By Ruth Sloven
I come from hardy stock. Benjamin and Pauline, my Greenberg grandparents, were children of sodbusters who homesteaded in North Dakota. My roots grow deep in that soil and my spirit blows wild and free, just like the wind, whipping across the prairie. But I had never thought of myself as a pioneer, taming a new frontier, until I answered the telephone’s shrill ring on November 2, 2006.
“Congratulations!” my father said. “We just saw a story about chronic fatigue syndrome on NBC Nightly News.”
“Yes,” my mother chimed in. “The story was all about this new illness that has just been discovered!”
They both sounded absolutely celebratory. I moved the cordless phone away from my ear and gazed at it in disbelief. Were these my real parents? Could they possibly be the same people who had believed, at various times and in a variety of incarnations:
A. I didn’t have a medical problem.
B. I was a (psychiatric) problem.
C. I had created and/or contributed to this problem.
D. I was addicted to poor health.
E. Some of the above
F. All of the above.
In all fairness, I had thought A, B, C, and E at times, myself. I had heard these explanations often enough, from the very people who were supposedly trying to help me, that I sometimes doubted my own reality.
At Thanksgiving 1982, I had been stricken with what first appeared to be a virulent case of flu. Ironically, on a holiday that celebrates abundance, I lost my health. I didn’t know that then. I believed I could survive this siege of illness by ignoring it and eventually it would go away. Instead, I cycled in and out of symptoms. Headache. Fever. Chills. Night sweats. Sore throat. Swollen glands. Insomnia. Fatigue. Exhaustion so deep even my bones hurt.
Besides living in a broken body, my brain forgot how to function. I got lost in the middle of thoughts, conversations, and the Twin Cities freeway system, where I orbited Minneapolis and St. Paul, Minnesota like a piece of space junk, fettered by the laws of gravity and my own short-circuited sense of direction.
Back in 1982, there were no maps to chart this unknown terrain. I remained a medical mystery until the first article about Epstein-Barr virus appeared in Annals of Internal Medicine in January 1985. As I scanned the pages, I felt a flicker of recognition. Finally, there was a name for my condition! Two years later, in 1987, the first CFS advocacy group was formed.
By then, traditional, allopathic medicine and I had given up on each other. Unwilling to accept a victim role, I embarked on my own adventure with alternative and integrative medicine. I experimented with everything from acupuncture to zinc. Rather than finding a cure to eradicate CFS, I became fascinated by the concept of healing, which is defined as the restoration of right relationship. On some level, I sensed this illness was an opportunity for me to heal the disconnections between my mind, body and spirit as well as reconnect, in a healthier way, with myself, others, heaven and earth.
When I placed the phone back to my ear, I was carefully, cautiously neutral. “chronic fatigue syndrome is not exactly a new disease,” I observed. “The United States Centers for Disease Control and Prevention has recognized it since 1988.”
Neither of my parents responded.
“What organization was the story about?” I prompted.
“Oh, some government agency,” my mother responded, vaguely. I imagined her waving her hand in the air as if that inconsequential detail had escaped her.
We had never had a conversation like this before. For the first time in 24 years, my parents were acknowledging I was sick with a legitimate, physical illness. And I didn’t know what to say.
Our usual dialogue went, “How are you?” My standard response was, “Fine.” This worked unless I had been recently hospitalized. Then Dad would scold, “We don’t like it when you tell us you’re fine and then later we find out you’re not.” I could understand that. But when I did communicate about my health, instead of receiving empathy and understanding, their comments and criticism ignited a blaze of blame and shame within me.
Three months earlier I had written my parents to ask for financial help. They sent a check. My mother had also written, “You, in my opinion, have been caught up in your own poor health and the consequences of your actions. Much money has been spent, much time and energy has been spent, and I think that your (downward) spiral is due to ‘a fixation on poor health!’” Then she diagnosed me as “addicted to poor health,” an opinion echoed in my father’s letter, and suggested I investigate the cost of evaluation and treatment at an addiction center so they could then determine how much of that expense they would commit to pay.
I was traumatized by this latest interpretation of my illness. I couldn’t eat. I couldn’t sleep. I couldn’t think about anything except the myriad times over the past 24 years I had been denied, disbelieved and discounted in my efforts to obtain medical care, financial compensation and emotional support. Despite the victories and validation of being awarded disability benefits from social security and my private disability insurance company, a forest fire of outrage, shame and terror consumed me, sparked by what I perceived as my parents’ latest attack.
Three days after receiving my parents’ letters, I accidentally sloshed burning butter out of a saucepan and scalded my right hand. While my roommate drove me to an acute care clinic, I balanced a huge jar of ice water between my legs and periodically plunged my hand into it to numb the excruciating pain. To my surprise, I found myself strangely comforted by this physical manifestation of my emotional inferno. The congruence of getting second-degree burns on my hand, which is the limb often associated with giving and receiving help, seemed more than mere coincidence.
After this self-injury, I realized I needed to be more honest with my parents. If I didn’t express my smoldering emotions directly, I feared they would find another way to get my attention.
“I feel like a rape victim,” I told my mother. “First you and Dad don’t believe me when I tell you I’m sick and then you assume it’s all my fault.”
“Well, I usually try to be helpful,” my mother responded.
“Right,” I agreed. “But diagnosing me as ‘addicted to poor health’ and then suggesting evaluation and treatment at an addiction center is not helpful.”
Despite my credentials as a licensed independent clinical social worker, now inactive, my mother refused to believe me, again. Instead, she urged me to take their letters to the psychiatrist who was managing my antidepressant medications to solicit his professional opinion.
Dr. Berger pushed his fashionable bifocals back on his nose as he briefly scanned my parents’ letters. Then he looked up, bemused. “What is with this addiction business?” he wondered. “You’re the second patient I’ve seen this week whose parents think she is addicted.” I might have shared his curiosity, except I was a participant in this particular drama.
“What is your official opinion?” I asked.
“You can tell your parents I said their suggestions are inappropriate.” Dutifully, I relayed his message. T hat was the end of this subject, until tonight’s phone call, two months later.
My father plowed into the growing silence by repeating, “Congratulations!” Then he added, “You are a pioneer!”
My mouth went slack as my jaw dropped in bewilderment. “Thanks, Dad,” I finally replied, with just a hint of a question mark at the end. I wasn’t sure what to do with the unexpected affirmation my parents were so enthusiastically offering me. Was it too little, too late?
Temptation tugged. How easily I could hurt us all by continuing to judge my parents for all those years they had judged me! I hesitated for a heartbeat. Then I made a conscious choice to heal. I didn’t want to invest any more time and energy to feed the flames of fight and flight. That way none of us could ever win.
My parents were trying their best.
Just like me.
And I had the power to set us all free.
“Congratulations to you and Mom, too!” I acknowledged, blinking back tears of grief, gratitude and grace. Then I inhaled deeply and imagined myself reaching out with both hands to reconnect with my parents, “We are all pioneers, building community to settle the CFS wilderness.”
This defining moment is one more in a series of miracles that mark not only the
20th anniversary of The CFIDS Association of America, but also my 25th anniversary of living with CFS.
Ruth Sloven is a former psychotherapist, speaker and consultant. She is also a contributing author to Showing Up Naked: Ten Women Reveal the Unexpected Events that Shaped Their Lives. Her piece, “The Mother Ring,” tells a difficult tale about the devastating impact of CFS and the enduring love that links four generations of mothers and daughters. Currently, Ruth’s writing group, the SUN Sisters, is working with the Caren Johnson Literary Agency to polish their book proposal. Ruth lives in St. Paul, Minnesota, and shares her backyard with her dog, Panda, and a Dancing Woman labyrinth. She has two adult daughters and two granddaughters.
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