The illness that is named and the name that perplexes hope
“It is a mystery perplexing us before. We get the name and fancy we understand something more than we did before; but in truth, we are more hopelessly ignorant…”
Names have impact. Names change lives, while the names given often indicate the dominance of the giver.
In Ancient cultures, especially in Mesopotamia, Egypt, Persia and Israel, names were thought to be powerful. A name could act as the all-mighty surrogate for a deity or a human being. Meanwhile, in the Bible, early on in Genesis 2:18–23 it is Adam who gives the names to the creatures of the earth, as if marking them.
In the Hebrew Kabbalah, writes Joseph Campbell in his seminal work, The Masks of God: Primitive Mythology, ‘the sounds and forms of the letters of the Hebrew alphabet are regarded as the very elements of reality, so that by correctly pronouncing the names of things, of angels, or even of god, the competent Kabbalist can make use of their force.’
We live in a world of names, it is how our society is structured and organized from birth with our certificates, our citizenship and all the bureaucracy onward ending with our obituaries. Names fill our lives, give our lives identity, meaning. Think of your own name, and how important it is to be loved and known in your circle of family and friends. Or even how when your name is heard in a crowd, you turn your head even if the calling voice is unfamiliar.
Think also of how corporations gain extra traction in our culture by the presence of their names through advertising.
Though names today are less hallowed, revered, they remain significant. And the discussion of them intrigues me, especially when it comes to the names of illnesses and how that naming affects certain individuals; namely the patients. Yet before we touch on that aspect, I would like to return to the Bible and an English thinker’s thoughts on the important and impactful nature of names.
Jacob and the Angel
F. W. Robertson - by photographer William Edward Kilburn - National Portrait Gallery, London
There is an illuminating section of a sermon by 19th century English divine Frederick William Robertson. It is difficult to source and, as such, I recommend The Idea of the Holy, German Lutheran theologian Rudolf Otto’s famed book on the study of the numinous. In the profound work on the emotional experience that he argues is at the core of religions in the world, Otto quotes an 1849 sermon by Robertson on ‘Jacob’s wrestling.’
Robertson provides a profound discussion of the ordeal of Jacob in Genesis 32:22–32. The young man, on the way to Canaan to meet his brother, sends the retinue of his family and servants on ahead. They cross the stream at Jabbok, leaving the young patriarch, Jacob, alone.
During the night, Jacob finds himself wrestling a man. The stranger demands to know his name. When Jacob offers it, the man (intuited to be an angel in Hosea 12:4) changes Jacob’s name to Israel. The fight continues on, with the man refusing to give his own name in return. Upon daybreak, when the mysterious man has left him, Jacob, exhausted but determined, calls the place where he wrestled, Peniel: for I have seen God face to face, and my life is preserved (Genesis 32:30 KJV).
In the sermon, Robertson writes something quite profound: Names have a power, a strange power of hiding God.
Further on, he notes, God’s plan was not to give names and words, but truths of feeling.
Name of the illness
Truths of feeling. While reading Otto’s work, this struck me. It made me reflect further back to the spring of 2002. At that time, still waiting to see a gastroenterologist, I had no idea what exactly my evolving illness was other than this arduous experience of internal bleeding and vicious diarrhea. When doing internet research concerning my symptoms, I came cross a variety of names related to digestive diseases. I tried to match the names (Crohn’s, diverticulitis, etc…) to what I was going through.
The night before my colonoscopy, a nurse came to retrieve me in emergency. Pushing my wheelchair, he mentioned ‘ulcerative colitis’ - his illness - and what he was doing to keep himself in remission. The next time I heard this name was the next morning after the procedure. Weary, worn out, I caught the name floating out from the mouth of an older nurse, not the specialist himself. I fell back asleep, but when I awoke, the diagnosis was confirmed.
When visiting me in the hospital in June 2002, my father actually rejoiced at the idea that we finally had a name for my suffering. We have a start, he figured. A label. The sullen and painful mystery was over.
‘We’, I wondered. The illness resided within my body, not his and yes, though he had lived with me through the panic, pain and crying confusion, I felt more alone with this new name or new label.
Impact
Initially, I didn’t fully accept the name, feeling it to be untrue or unrelated to my life and experience. I didn’t want to hang a label over the situation. Meanwhile, I regained my strength in the hospital, eating and eating while letting the ‘miracle’ liquid (prednisone) seep into my arm. The name was something of an afterthought.
And though I switched from IV steroid to the pill form and though released from the hospital, I was not completely released from the name. One thing I understood early on: this illness was considered ‘chronic’… a medical word I heartily disliked. Chronic, a label meaning ‘for the rest of your life’. This, too caused me to shudder as having this double name was now associated with me, that I was considered both sick and, supposedly, incurable. From there, I noticed the different way medical staff at clinics and everyday souls looked at me. I was one of those people/patients who could potentially be ill again. And again.
Yet for sufferers, it is like the proverbial tip of the iceberg and the further below the surface you go, the researched associations and histories linked to it can create a haunting aura of fear and trepidation.
I started to get serious. Doing my further research, my due diligence (as my doctor kept me in the dark), I read stories about remissions that were fraught with worry of the disease’s return. When it did, those horror stories ranged from weeks and months spent bedridden, in hospital or at home, a pharmacopeia of drugs beside the bed. In worst-case scenarios, the colon was surgically removed, and the patient, after going under the knife, was fitted with a stoma to help with future digestive evacuations.
For me, the name of the illness, the name I couldn’t ignore, had this brooding and frightful potential based upon these subordinating cases and studies as well as reports.
The dark dream of waiting in time; separations between self and body
“Names have a power, a strange power of hiding God.”
What I learned is that the name of the illness and the drugs I initially took, in fact, hid the source of the disease, couching it in vicious mystery. The ‘illness’ became a ghost, haunting my life and all hopes for a fraught-free future. For a time in this unpredictable and uncontrollable remission I came to fear my body based on this bogey man that didn’t live in a childhood closet or could be seen holding a dangling sword above my head, but rather the threat was inside me, in the dark and ghastly caverns of my own adult digestive tract. Like dealing with Grendel in Beowulf, it was a matter of time before the monster’s return.
The name separated me from my body, the way the name of ‘God’ separates God from the deity’s true presence in existence. (For those atheists, the concept also exists in Taoism: The name that cannot be named is not the eternal name. Tao Te Ching, Chapter I.)
And this separation due to a name further emaciated my relationship to myself as much as to my body. The name kept me from truth. I felt I had to unlearn the name through the course of my healing.
For one, I would later discover, I had to arrive at what Robertson calls the truths of feeling.
Denying the import of the name
The greatest and riskiest step I took was the first: I went off the maintenance medicine, salofalk, in October 2002. I merely assumed the bacterial infection leading up to the illness had caused the colitis. “Remove the superficial cause and the illness would not return” — this was my way of thinking at the time.
When the illness returned, however, I next consulted with a naturopath, believing it best to heal using a variety of herbs and supplements. This ultimately yielded more complications in the way of a blockage. After my horrid experience in the hospital, I started to regard the illness more and more as a message, a sign of deeper emotional and psychological malaise as much as spiritual distress. My body, the messenger. The name could no longer cover truth for me. The name was a distraction.
On my journey, though I despaired and suffered, I still believed all the while that my body was punishing me, that it was this darkened double shaming my life, soiling my pants, ruining my health. Therefore I had to be open to the possibility that healing would not be conventional or medically accepted.
Through an illness, darkly
Slowly I began to look at my body as a reflection of me and my confounding emotions. When I looked at its sources and causes, the name itself lost more and more of its meaning.
Moreover, ulcerative colitis held no value because the label and those who gave it to me offered no consideration of who I was as an individual, as a unity, a self, a being-reflected-via-the-body. A medical name for an illness without a person suffering it is a theoretical entity. The name of the illness had previously superseded my own relationship with my body, and thus I chose to ignore the name and its associations.
This in turn meant further ignoring the prognosis of ‘chronic’ or the word ‘remission’, the murky and uncertain no-man’s land between digestive peace and ravaging flare-ups. I had read Bernie Siegel’s book, Love, Medicine and Miracles and agreed with him: There are no incurable disease, only incurable people. By accepting the name of the illness, one accepts the label of ‘hopeless’ with it. This means one accepts there is no control or help beyond the medical community or from outlandish and punitive diets.
I threw off these labels and instead of using medication or diet to heal myself, I have used my own self and emotional awareness with the illness as a guide to the distress. I no longer feared my body but learned to listen to it. Furthermore, I looked and relied upon the truths of feeling.
It was frightening, but as the years passed, and the more I came in contact with my body and the misaligned emotions, the moments of misinterpretation, the more I evolved. The symptoms were less mysterious. I learned about forgiving, about self-love, self-acceptance, compassion through regular therapy and regression therapy. I came to the truths within my body expressing the unreleased, the angered truthful feelings that I had once resolved to suppress.
I would argue that the name ulcerative colitis blocks many patients from learning such things. Patients are like Jacob, I would argue. But instead of facing themselves, the mysterious, they wrestle with the label and throw drugs and diets at it instead of tackling the deeper and more difficult task of healing the self, the psyche.
This to preserve their lives.
And the lies…
Jakob ringt mit dem Engel (Jacob Wrestling with the Angel), 1659, Rembrandt van Rijn - Gemäldergalerie, Berlin