Breaking New Ground
Many years ago, someone shared this familiar quote with me, and it stayed with me because it names something so deeply true to the human predicament:
Do not go where the path may lead, go instead where
there is no path and leave a trail.
– Ralph Waldo Emerson
Right! Whatever our age, education, or financial status, we all face questions we simply don’t know the answer to, every single day. Not theoretical questions: questions of our life and well-being, or the life and well-being of those we love. We just can’t seem to get the answers that we need. So we instead venture out where there is no path.
God rigged the world like this so that we would seek him. Listen to what he is saying here Isaiah 42:16.
“I will lead the blind along roads they have not known and guide them along paths that are new to them.
I will turn their darkness into light and make the rough spots smooth. This is what I will do for them. I will not forsake them.”
Today, I want to push your thoughts. I want to give you glimmers of light with a different way of thinking about autoimmune disease. This article may give you answers that you are looking for, or at least give you direction to recovery.
You may be sick or someone in your family is not well, so you are searching for answers that will help or heal them. That is why you are reading this right now. I want to give you something to think about and do something that can change your world.
First I want to repeat a story that Gabor Mate’ writes in his new book “The Myth of Normal”.
“I kind of injured myself,” Mee Ok told me recently, “because I was doing very well and then I tripped, running up a flight of stairs. So I stubbed my toe.” Her warm, impish humor radiates in the telling, as does a certain sense of pride. For most of us that would be an odd reaction to a painful mishap like that. But to the Mee Ok of seven years ago, such an injury, incurred while moving vigorously against gravity, would have seemed like an impossible dream. Diagnosed at age twenty-seven with scleroderma, she had become completely disabled in a short time despite all that mainstream medicine had to offer. She lives in the Boston area and was assessed and treated at one of Western medical science’s most hallowed venues.
From the Greek for “hard skin,” scleroderma is an autoimmune disorder that manifests in debilitating joint inflammation and painful tightening of the connective tissues. A more inclusive name for the condition is systemic sclerosis, as the buildup of hardened tissue can occur in many organs including the esophagus, blood vessels, and lungs. In Mee Ok’s case, it showed up in agonizing swelling of her hands, shoulders, and knees.” The pain was everywhere,” she recalls. “It flooded my whole body.” She soon had to leave her job at Harvard as an assistant to a prominent academic. Formerly a 120-word-per-minute-typist, she now found her hands becoming rigid and claw-like, stiffening into agony. Merely touching the keyboard was agony. When I first interviewed her in 2014, her physiognomy was grim, her face a rigid mask, and her taut lips barely able to cover her teeth. She was unrecognizable to herself and wholly incongruous with the person one encounters now, her smile quick and responsive.
Within a few years of the onset of her disease, still in her early thirties, Mee Ok wanted only to end her life. Facing a death-sentence diagnosis, needing a wheelchair to mobilize, unable even to get out of bed without assistance, and anticipating that her torments could only intensify the longer she lived, she investigated the possibility of medically assisted suicide. “If I had been in a country where euthanasia was legalized, I would have fit all the criteria. The pain was unbelievable,” she told me. “There was no prognosis that gave me a reason to stick around. I was losing my body to be trapped and I wouldn’t have been able to push a button.”
In Mee Oks' case, it fell to the patient herself to make the diagnosis and find a cure. She found that the medications that were being prescribed to her were only adding to her discomfort.
Autoimmune diseases are among the great unsolved mysteries of the medical profession. Most are considered “idiopathic” in nature, which simply means “of unknown origin.” Naturally, if we cannot identify the cause of a condition, we will be stymied in our efforts to cure or reverse it. In many cases, symptom suppression or, sometimes, surgical repair or removal of damaged tissue is the most modern medicine can offer. Such measures do afford welcome relief to many, but they cannot reverse the course of the disease and, as with Mee Ok, leave a great number of people consigned to prolonged deterioration disability.
None of the specialists who looked after Mee Ok inquired about the conditions-physical and emotional-that preceded her life-blighting illness. This is despite the voluminous research that links stress, trauma, and inflammation, and despite the multiple studies that over many decades have explored such connections in rheumatoid arthritis, multiple sclerosis, and other autoimmune conditions. Not only are such possible lines of inquiry not pursued, but they seem to be verboten in mainstream circles. “I’ve come to feel a bit off the wall when talking about these issues,” a specialist in rheumatic diseases at one of the best-known U.S. teaching hospitals told me. “Since graduation, I have markedly changed the way I practice, because I started observing in my patients the relationship between stress and the onset of the disease, and how great a role trauma, psychological and physical, play in their disease.” The doctor, who requested anonymity for fear of alienating her colleagues, has observed firsthand what she calls “remarkable results” among her patients, both in terms of recovery and even, in some cases, getting off medications altogether.
Had Mee Ok’s doctors inquired along these lines when she presented her distressing symptoms, they would have learned that she had sustained two major abandonments by the end of her first year. She was born in Korea to a single mom who placed her in an orphanage when Mee Ok was six months old. At one year of age, she was adopted and brought to the United States by an evangelical couple who reared her according to the strictest fundamentalist principles. Before Mee Ok was ten, her adoptive mother suffered a nervous breakdown. Sometimes in her teenage years, her father, in a fit of religious remorse, confessed to her that he had sexually abused her for much of her early childhood, from age two onward. She completely repressed these memories, secreted them and all associated feelings-pain, terror, and rage deep beneath the surface of her awareness. As we will see later when we discuss healing, Mee Ok’s improbable recovery, veritably a deathbed resurrection, owed everything to her confronting this long-buried trove of hurt. 1
Why am I telling this story of Mee Ok? Did you know that repression disarms one’s ability to protect oneself from stress? Did you know that people with chronic illnesses have certain personality features?
These traits are
An automatic compulsive concern for the emotional needs of others, while ignoring one’s own: Rigid identification with social role, duty, and responsibility;
Overdriven, externally focused multi taxing hyper-responsibility, based on the conviction that one must justify one’s existence by doing and giving;
Repression of healthy, self-protective aggression and anger;
Harboring and compulsively acting out two beliefs: “I am responsible for how other people feel” and “I must never disappoint anyone.” 2
Our core needs are attachment and authenticity. Children often receive the message that certain parts of them are acceptable while others are not; a dichotomy that, if internalized, leads inescapably to a split in one’s sense of self. Working to be acceptable to the parent may become a child’s way of survival. It is sobering to realize that many of the personality traits we have come to believe are us, and perhaps even take pride in, actually bear the scars of where we lost connection to ourselves, way back when.
Here’s something else I’ve come to know, which I hope will be as heartening for you as it is for me: it is not only necessary to leave blame and guilt behind on the road to healing, to move from self-accusation to curiosity, from shame to approval these are always possible. I have realized in my journey that I have a choice. When you are conditioned to do something, you’re not even aware you are doing it, because you are in survival mode. So when you are aware something needs to change you need to take responsibility to make the needed change.
The onset of inauthenticity may not be a choice, but with awareness and self-compassion, authenticity can be. 3
Mee Ok accomplished the challenging work of understanding her coping traits through the exploration of her past. By understanding and healing from her personal history, her body was able to make a full recovery. If we take the time to explore why we may have traits that ultimately lead to chronic illnesses, we can choose to make changes that will enable us to recover, just as Mee Ok did. Through self-discovery, we can work towards achieving good health and becoming the people that God intended us to be: authentic, beautiful, and talented.
I’ve written about my struggle and journey with MS in my book “Completely Healed: Reshaping the Mind-Restoring the Body.” Keep checking my website it will soon be available to preorder. This is a narrative of my own life and my constant work of learning and changing to overcome the personality traits that lead to chronic disease.
1 “The Myth of Normal” Gabor Mate’ pg 68
2 “The Myth of Normal” Gabor Mate’ pgs 101-102
3 “The Myth of Normal” Gabor Mate’ pg 112