Once upon a time there was a witch with magical words. Her words charmed and spelled, healed and hallowed. When she spoke, apertures opened and fetters unbound.
Then, in the fullness of life she met a death and was exiled to nine long years of incommunicable dis-ease. You see, even with all of her magic she was limited by language. In modern culture it often feels impossible to communicate the experience of disabling chronic illness.
I am the witch of words, but here words have failed me.
When you have been telling people you are sick for years, they tend to stop having a context for what illness means. And, as we know, language is rhythm and sound, woven into meaning with context.
For most of my life I was a well person, and like most well people, I saw sickness as temporary, something you get over. Well people use words like, "feeling better" when communicating with sick people. But with a chronic illness, better is amorphous and sometimes unachievable. Two days ago I was possibly better. But then I had a gallbladder attack that left me in bed all afternoon, and today the rains have returned so my whole body aches. What is better? No progressive, measurable methodology, no linear trajectory. In this way, for some of us, better does not exist.
Long ago I wrote:
Better is a bitter lisp
Calls you down to dig
Leaves mud around your shoe
I have Myalgic Encephalomeylitis, more commonly known as Chronic Fatigue Syndrome, but most of us now use ME as the label. CFS has a long history of being dismissed, denied and categorized as a psycho-somatic illness. Recent research has contradicted this presupposition about ME/CFS, yet even with quality science emerging that identifies ME/CFS biomarkers there are few resources for diagnosis, treatment and education. The CDC estimates as many as a million people in the US likely have ME/CFS, yet a pitiful amount are accurately diagnosed and a tiny fraction of those have access to care from a specialist.
I know this intimately, having received my ME/CFS diagnosis in December of 2016. At that point I had been sick off and on for seven years. Then in 2016 I had a severe crash that led to me losing my job, dropping out of my PhD program and spending most days homebound and in bed.
There are no ME/CFS specialists in Portland. My doctor is part of the largest medical system in the state of Oregon, but had no one in the system (or even the state) she could refer me to for treatment. I requested a referral to the Stanford Chronic Fatigue Clinic in Palo Alto, California. The waiting list was a year. In that time I had no education about my illness other than books and online research, no course of treatment and no support.
In 2017 I did receive treatment for mycotoxicosis, brought on by exposure to toxic Stacybotrys mold. I have a gene that makes these toxins invisible to my body's defences, and it was this exposure to mold, combined with chronic stress, and a compromised immune system, that led to my severe crash in 2016. Most MD's don't believe in mold though, so this portion of my illness has always carried an additional burden of being illegitimate.
Whatever others believe, I'm sick. I have been sick for years. Living in moldy houses, waiting to be seen by a specialist, trying to work, parent, be social, "normal", but the truth is I haven't had consistent health since 2009 and for the last two years I have been ill to varying degrees every single day. I run low grade fevers whenever I overextend, get terrible headaches that are unresponsive to medication, am frequently nauseated in spite of my limited diet, and worst of all I am often so weak and shaky that I cannot walk or drive. At Stanford this August I finally received diagnostic proof of my illness, the "reason" why I have been sick for so long. My body has incredibly high levels of inflammation, three times what is normal, and I tested positive for six different viruses including Epstein-Barr and CMV. Researchers at Stanford believe that in ME/CFS immune dysfunction allows for viruses to remain active at chronic levels increasing inflammation and leading to more immune dysfunction. With inflammation reduction, antiviral therapy and strictly limited activity, some patients can improve in one to two years time.
This is good news. But it is a prognosis full of slowness, setbacks, spiral dancing through limitation...in short, it means nothing though to the people who have heard me say I'm sick for years. Because I'm still sick.
What I've learned in this time of isolation, as friends and work and life all fell away: We don't have a place in our culture for people who are chronically sick, disabled or dying. In the absence of inclusion or education, we avoid. We are afraid of saying the wrong thing, doing the wrong thing, and our social norm is a kind of artificial cheer--ARE YOU BETTER??? Which leaves us feeling helpless--both the person who is trying to be supportive, and the person who is sick.
What I wish to learn in this process of undoing, unspooling the known, the normative, the usual and customary from my life (by force, yes, by force of illness) is how to hold my not knowing in a place of compassion and actually listen to what people need. To make space for the ill, the disabled, the dying. In myself, in others, in this weaving.
I've thought of this many times as a sick person, but also as a long ago mother of newborns and a caregiver of sick people, which are also places that exist outside the norm: What if we could just be? Without trying to optimize or improve? What if we saw illness as a kind of holistic health, a portal, an initiation into sacred mysteries? A rite of passage.
What if the sick, disabled and dying are the edge walkers, hedge riders, cellular secret keepers of this magic life? The ancestors are closer to me now than ever before, the undoing of contemporary culture a way into ancient rituals, precious magics. When well I avoided the dark, skirting the pits and thresholds on my way to new and (again, ever elusive) better. But a healed culture is inclusive of everyone, and an empowered culture bends close to listen to the power of the liminal. We the sick wear the death's head, the Goddess Hela speaks through our pain. It is necessary, a letting go of self-ness impossible otherwise. I move toward her now, at last, unafraid.
This all-hallows eve I light the candles for my ancestors, for the beloved dead whose legacy flows through my blood and bones. I lay out offerings for my Dísir, the ancient grandmothers of my lineage whose name means Goddess, whose divinity assures me that this embodied process of undoing is, in fact, a gift. And I dedicate myself to the Goddess of Death, to her work of supporting the sick, the suffering, the impoverished, the dying through passage ritual and compassion.
We need new language to speak the experience of chronic illness, new words that hold in their presence a power, an elixir that transforms all who are initiated by embodied processes. In the ancient Norse poem, the Völuspá, which Maria Kvilhaug translates as The Divination of the Witch, the Goddess Gullvieg survives three burnings by the aesir gods. She takes a new name, Heiðr, and travels the land practicing seiðr, divining and transforming wyrd. The poem says she is much loved by "illrar" women. Illrar in Old Icelandic means wicked, evil, difficult or, simply, ill. In a simultaneous world, we transcend duality, and what is wicked becomes also what is good, what is ill becomes also what is well. All may rejoice in initiatory survival, all may welcome seiðr, women's magic. In the absence of language, we open to sacredness: dis-abled, abled by the Dísir, initiated into wholeness through solitude, otherness, suffering and sacrifice.
I began this essay with a sick heart, yet I end with a whole one. In the garden, the year dies in cycle and chickadees eat seeds buried in the composting lemon balm. Perhaps one of the reasons we have no patience for illness is we have no knowledge of true health. Health comes from the Old English, hælþ, meaning wholeness. The roots of hælþ are intimately twined with Hela, mirrored in the Old Norse heill, healthy, and helge, holy, sacred.*
When we return to the sacred whole, all experience is essential. The rot in the garden, the death of our beloved, the pain in our body. This I honor. This I claim.
For now I dream of Hel, heill, helge, wholeness as darkness falls and the season turns again.
By this and every effort may the balance be regained.
With blessings to your wholeness.
*from the ever beloved Online Etymological Dictionary