“I have a diagnosis for you,” the rheumatologist told me, three months after I had been infected with a virus in my spine.
“Thank God,” I said. “What’s wrong with me? Am I dying?” I thought that anyone in this much pain who couldn’t get out of bed had to be dying.
He explained that my symptoms indicated illnesses called Fibromyalgia and Chronic Fatigue Syndrome, and that I wasn’t dying. I wasn’t relieved. Back then, I couldn’t imagine living even another day in my condition.
I listened for a while and then asked, “But how do I get better?”
“We don’t know much about FMS and CFS other than that they often present together and are related to stress, and problems with sleep. I would recommend some counseling and that you have a sleep study. And get some mild exercise, like walking, slowly, to begin with.” Exercise? I could barely get out of bed and when I turned over, the pain was excruciating.
“Some people with milder symptoms manage to work part-time, but in some cases, like yours, we’re not sure that you will ever function at your previous levels.”
“What are you saying?” Tears began. “There is no way I can get better?”
“Get some counseling. If you can regain restorative sleep, your symptoms may ease. But I can’t tell you that you’re going to get much better.”
“This can’t be right,” I blubbered. “I can’t live the rest of my life like this. I’m 45 years old!”
“I’m sorry,” he said, signing the billing form. “More research is being conducted. We’ll know more in the years to come.” He handed me my file. “I’d like to see you again in three months.”
I wiped my tears, blew my nose, and made my co-payment, but was only two steps out the door when I began sobbing. The mental fog, with which I still suffer, was over the top. I couldn’t even see. The doctor mentioned breakdown? That day was the point of my complete breakdown, when I no longer wanted to live.
That was 12 years ago. Oh, the places I’ve been, the specialists I’ve seen, the tests they’ve run, the hopes I’ve had, the pit of sorrow and self-pity I fell into, the crushing guilt I’ve experienced over not being there for my children, the anger at myself for ‘dropping out’ of life, my bargaining with God—all to end up here, at last, the place of acceptance. Twelve years is a long time, longer than it takes most people who become disabled to make the mental/emotional/physical and spiritual adjustments to a new way of living. I’d still like to make excuses for myself, but I won’t, not here at least.
When people get sick, we ask, “Why me?” or “Why my child?” You can read on the Internet a lot about fate and karma—that it couldn’t happen unless you deserve it, about genetics and unhealthy lifestyles, and mental, emotional and spiritual imbalances that reflect in the body. My problem was fanatically searching for the answer. I was certain that if I could find it, I could heal it. Part of me still believes this, but I realize now there is more to the story of illness and the purpose of living through the things we do.
Life is a container from which we draw our ‘tickets,’ and we never get the wrong ticket (except for Warren Beatty in the 1978 movie Heaven Can Wait🙂 ). The overriding purpose for being born on earth is to realize we are God’s children and to choose, with our free will, to ‘come home’ to peace and love and light. Whether our lives are short or long, lived vibrantly or with dis-ease, everything that we do, everything that happens to us, serves that ultimate purpose. And if we’re not interested in peace and love and light right now, we can take all the time we need for struggle.
In my case, while God and guilt were on my mind a lot, I would have continued to work (and moaned about it—which is what we do until we can’t work), cleaned house every Saturday, hauled my children and their friends around, attended their games and recitals, volunteered at their schools a bit, and once in a while, gone to church. I wouldn’t have taken the inner journey that I have, and I would rather have died than to write in a public place about my life, or to develop and express opinions such as the ones I do here at NAtP. But that’s life, isn’t it? A mysterious journey into the great unknown—and the finest and greatest Love story ever told.
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