Guest post by Carol. For many years, Carol was a member of The Way. You can read Carol’s blog here.
What follows is an addendum to Carol’s story.
Why an Addendum
In the summer of 2005 my mental health therapist at the time asked if I would write my health story to be included in a book. She asked a few of her clients this same request. She had specific topics she wanted covered; thus the content of the narrative posted below. I have made only a few revisions since it was originally penned.
When I got involved with The Way in the fall of 1977 at the age of 18, I was in good physical health. But four years later, for the first time in my life, I developed asthma and other symptoms of an over-responsive immune system. My symptoms worsened during subsequent years and continued for the next two decades. They did not significantly improve until I began stepping outside Way doctrine and tapping into a more authentic path for my life.
The following was written a couple years before I wrote my Way story. I later decided to add it to my Way story as an addendum. I added it because my health story and Way story are intricately intertwined. Autoimmune illnesses can be triggered by, among other things, stress and trauma and suppression of emotions, all of which one experiences in a high-demand group or relationship and with indoctrination of a toxic faith.
I have no doubt that Way doctrine had a detrimental effect on my physical health, which includes my emotional and psychological well-being.
Healing the Soul, Healing the Body
At 46 years old, I sat across from my counselor. She looked into my eyes and stated, “Carol, I want you to start thinking like a well person.”
The statement stunned me. I felt nebulously lost within it, having no concept of what her words meant. Over the next few days I rolled the statement over and over in my head and heart. The ensuing story is part of the journey endeavoring to discover what it means to think like a well person.
I choose the 39th year of my life as the threshold for the following meandering, a snippet of my journey. It was in that year that I began to submerge myself in ink and page, writing my way toward wellness. Journaling changed my course from death to life, from despair to hope.
At 39 years old, I was married with two children, ages 8 and 10. For the last seventeen years I had suffered with severe asthma; numerous bouts of pneumonia; multiple sinus surgeries (1984, ’85, ’86, ’96); environmental, chemical, food, and inhalant allergies; hives, welts, and various skin disorders; systemic candida; depression; anxiety; mood swings; chronic fatigue; body aches; and a myriad of other symptoms that go with an over-responsive and depleted immune system. I had been pumped with intravenous drugs, swallowed or inhaled a host of pharmaceuticals (including thousands of doses of steroids), been pricked with needles hundreds of times for various reasons, and received a myriad of allergy antigens. Alongside with conventional treatments, I had utilized alternative therapies including homeopathy, oral and intravenous vitamin/mineral supplementation, strict dietary protocols, acupuncture, herbs, bodywork, prayer, and some psychological counseling.
Exhaustion and depression were constant companions.
I was caught in a sticky, mucous-coated, stagnant, thickened, stringy web that felt like it morphed into every tissue and cell beneath my skin.
I felt trapped in my own body.
I craved to breathe freely.
I thirsted for fluid energy and to move without pain.
I dreamed of running like a deer, graceful and free through the woods.
I hungered for freedom.
I often felt like a complete failure as a believer, as a mother, as a person. Shame coursed through my veins. My suicide plan was foolproof, but I couldn’t leave my children with the legacy that their mother had committed suicide. My children were my saving grace, my reason to keep drawing one more breath, to keep trying.
Life was not always dreary. Alternative treatments had become my mainstay for recovery, and I had stretches of improvement and hope. But the improvement came in incremental bits.
Yet, now my hope was depleted; it was time to quit hoping. I had clung to the belief that God’s will for me was complete health. It was time to give up the dream that I could actually get well. Death seemed the only alternative for release. At that point, I took my pen to paper and began to write.
Emotions crystallized into words upon the page, detailing the self-loathing, the asthma attacks, the pain that racked my body, the exhaustion, the anger, the murky darkness of it all. I felt such deep, deep shame and self-hatred. Day after day I filled the pages; I held nothing back. I poured it all onto paper, including dreams and hopes.
I wrote because I had to. I did not know what else to do. I never imagined that by putting pen to parchment my circumstances would begin to change, but they did, in a most powerful way.
Within a few months of starting to journal I was hospitalized yet again (October, 1998) and connected with a doctor who discovered I was suffering with mercury toxicity, a typical cause for immune dysfunction. In January, 1999, I was again hospitalized and connected with a different doctor who confirmed the mercury toxicity. That same month I began an intense, yearlong detox regimen which included oral chelation therapy, intravenous and oral vitamin and mineral therapy, hydro-colon therapy, low heat saunas, and coffee enemas.
I continued to journal and began to re-educate myself on healing. I began to have hope again. Unknown to me at that time, I suffered my last severe episode of asthma attacks in January, 1999.
After six months from my last round of asthma attacks, I was able to start addressing more definitively other symptoms: fatigue, mood swings, hives, and pain. It was like my body continually pushed symptoms to the surface that were desperately crying to be released. Yet I was hopeful that these symptoms too could be ameliorated; the asthma was already curbed, and I had new treatments to try.
Maybe my body can get well if I can learn better how to listen to what it is trying to communicate to me, I thought to myself. Maybe I can allow it to heal itself. Maybe, maybe, just maybe…
The next regimen on my agenda was a treatment known as Enzyme Potentiated Desensitization (EPD), a complex allergy treatment that approached the reprogramming of miscoded T-helper cells. Every eight weeks, for 1-1/2 years, I would receive an injection containing over 200 antigens mixed with an enzyme to penetrate the miscoded cells. I would then go into quarantine for five days to limit my exposure to allergens and eat only venison, tapioca flour with water, and sweet potatoes, due to food sensitivities.
My health improved with EPD. A sore spot in my left lung, that had been present since my last bout with pneumonia, cleared. Some skin conditions improved. My sense of smell was restored. Allergic reactions and energy improved. Then the FDA abruptly stopped the use of EPD in the United States. My sense of smell was stolen again and some allergy troubles resurfaced. But I remained hopeful that other doors would open for me.
Shortly after EPD was taken away I was diagnosed with a herniated disc, confirmed with an MRI. A friend loaned me the book, Healing Back Pain by Dr. John Sarno. The book was about how some people suppress emotional pain which then manifests as physical pain. I matched the profile. Within six weeks of applying what I had read, the back spasms were 80% better. After five months, they were completely gone.
Due to the improvements gained from applying what I had learned via Sarno’s work, I was prompted to delve more deeply into the relationship between my emotions and my physical illnesses. How many of my illnesses and symptoms could be due to suppressed emotions? Am I honest enough to be able to open up and see what really lurks in my soul?
In latter 2000, I began regular psychological counseling to see how much of this connection could be a cause for some of my ailments. Over the subsequent four years, I developed a support system which consisted of journaling, bibliotherapy, and relationships with a handful of people and professionals that I could call upon. I grew in my ability to open up, to peek within and see the ugliness and the beauty. I saw more ugliness than beauty. But I began to understand that even what I perceived as “ugly” was okay; I didn’t have to fear it.
During these four years, my symptoms became less intense and then plateaued. I lived managing mood swings; hives and sneezing attacks a few times a week; and a hormone dysfunction that would manifest in severe aches, depression, and cognitive impairment at least five days per month. I continued my search for relief through conventional means (including medications for the depression), bodywork, nutrition, homeopathy, and energy medicine. I continued with counseling and journaling. I began to think that this was as well as I could get.
In latter 2004 I was introduced to a nutritional product that had more life-changing effects. Within nine months of consuming this product my hives completely disappeared. The mood swings and debilitating hormone dysfunction were probably 85% better. I was able to get off my daily psychiatric medications. My energy was more stable. I went from feeling like I was hit by an 18-wheeler at least five days a month to being hit by a bicycle a few days a month. I was beginning to taste freedom.
It was during this time that my counselor stated those unforgettable words: “Carol I want you to start thinking like a well person.”
My adult life had revolved around sickness – a science of schedules and charts and foods and pills and needles and tests and treatments. This new experience of wellness was scary. Oddly I found myself wanting to break down, but couldn’t.
I thought I would run free once liberated from this tyranny of entrapment. Yet, I was in new territory, unfamiliar, uncomfortable. What was I to do with myself now? It took me six to eight months to become comfortable with being “well.”
In the fall of 2005 I was well enough to make some major religious changes. After twenty-eight years of loyalty, I chose to leave an authoritarian religious organization. In hindsight, I have no doubt that certain doctrines and practices that I had embraced from this organization were major contributors to the chronic illnesses in which I had been ensnared. Without the wellness I had been granted by 2005, I don’t know if I could have made the break from that organization. It took much resolve and energy that I didn’t have prior to 2004.
Over time, after divorcing the organization, I was able to tap into my heart again, and I began to understand with greater clarity underlying emotional causes that contributed to the previous decades of illness.
What are my maintenance practices? Decent nutrition, medications as needed, rest. Movement, nature, play. Mindfulness, reading, writing. Music, movies, laughter. And authentic relationships with myself, my environment, and loved ones. When I experience physiological symptoms or tumultuous emotions I endeavor to seek self-awareness and then to listen and follow the paths that offer relief.
What does it mean to think like a well person? It means I recognize that I am significant, worthy of love, and fully human. I am a vital member of the human family. I am not an appliance that requires fixing; rather, I am a yearning individual with an innate need for love, acknowledgment, and to know my value.
(The book Healing Back Pain mentioned above, prompted me to dig deeper for a specific program to help guide me in uncovering emotional causes for physical symptoms. That search led me to this link, MindBodyMedicine.com. The originator, Dr. David Schechter, has a specifically designed journaling, reading, and education program that enabled me to better tap into emotional causes that had prompted certain physical symptoms.)
In 2008, at age 49, I had full, left hip replacement surgery due to degeneration brought on by years of high doses of steroids that I had consumed to keep me breathing. In 2010, the manufacturer of my implant announced a voluntary recall because some of the implants were defective. Through 2012, I went for yearly examines of that hip, and it appeared that my implant was okay. That status changed in 2016.
In December, 2009, I contracted MRSA, which erupted four different times within five months.
In late September, 2010, I made the difficult decision to file an official complaint against my then-mental health cult-recovery therapist. It was one of the hardest decisions of my life. He was investigated, and his license was revoked in January, 2014. I was not the only client whom he harmed. (To read an overview of that experience click here.)
In May, 2011, I developed debilitating symptoms simultaneously in all my limbs and extremities while taking a medication for toenail fungus. In 2013, it was properly diagnosed as polyradiculitis, a rare type of peripheral neuropathy typically associated with chronic inflammatory demyelinating polyneuropathy (CIDP) and Guillain-Barre syndrome (GBS). But I do not have CIDP or GBS. With polyradiculitis, multiple nerve roots are swollen at the spinal cord. For me, that includes roots at my lumbar and cervical neck regions. Symptoms have spread to all my limbs and extremities, my back, my neck, and my jaws. I receive steroid lumber epidurals every twelve weeks and steroid cervical neck shots every six.
In June, 2016, we discovered that my recalled hip implant from 2008 had slowly been leeching cobalt and chromium into my body. Among other things, heavy metals can sometimes be a factor in nerve damage. On August 30, 2016, I had revision lateral hip replacement surgery replacing the 2008 defective recalled implant. It typically takes one to two years after removal of a leeching implant for metal levels to come down. We’ll then have a better idea as to how much of a role the metals might play in the nerve damage.