My chronic-illness crash came the day my husband fell. Three days earlier we’d driven to Willamette Falls hospital at five in the morning so a surgeon could repair his epically misshapen spine. Ed’s post-surgery recovery had proven challenging; but on this morning as he shuffled from the bedroom to the bathroom with the help of a walker, I watched as he began to shake. Then as I implored, “Don’t fall. Just don’t fall,” he went ashen and crumbled to his knees. Two hours later, the same thing happened again. Each time, I held up the weight of his body against my legs so he would not fall backwards, anchoring him, knowing that if he fell backward his pain would be severe—not to mention how it would impede his healing. Eventually, Ed stabilized and with the strength of his arms and legs, pulled himself up. He did not fall again.
Weeks earlier I was tested for lupus (“wolf” in Latin) and had most of the signs. But it wasn’t until I crashed, following those stressful few days, that the “working diagnosis of lupus” and what it would entail for my life, came frightfully clear. Where in the months prior I’d experienced all-over joint pain for long spells, immediately after this experience and for several days I started to hurt all over, every minute, every day, in every joint—from my knuckles down to my toes, and every joint in between. Movements I’d always taken for granted, such as rolling over in bed or reaching to pick up my laptop, caused wincing. Fatigue made a walk to the kitchen a slog through Amazonian quicksand. The inflammation even reached my eyes and one ear. If I started to feel a slight reprieve and tried to resume “getting a few things done,” I’d slide backward. I realized the only way to deal with the autoimmune-induced inflammation of lupus was to rest until the flare up of symptoms subsided. Intuiting it would take a while, I cleared my calendar for at least two weeks.
Telling our stories of chronic illness
I have been dealing with chronic illness (adrenal insufficiency and MCAS, or mast cell/histamine problems) at least since my twenties. Though I’ve made brief mention of it in my writing, I’ve written about it little—yet chronic illness is a shoal I navigate daily. Why the reluctance to explore this story in my writing? The answer is three-fold: 1) shame (its own long and all-too-common story); 2) the dozen other things I aspire to write; 3) the assumption people will find it boring. After all, chronic illness is—almost by definition—undramatic. And I am not a famous, wealthy, or beautiful person, the kinds of people about whom readers want everyday details. Yet at least half of Americans live with chronic illness (everything from heart problems to diabetes to endometriosis to recurrent cancer to autoimmune disease to Long COVID). Chronic illness is a story many of us share. I’ve decided it’s time to write my version for those who might benefit. Because most of my readers of are the spiritual bent, I will surely tease out that aspect—which is not to say I will give false assurances or imply illness and/or pain are worth it because of spiritual insights gained. As someone who has, since my youth, often not felt well, I find this idea to be rubbish. I will write the columns honestly and contemporaneously (as a serial), when things I write about are raw. I hope you will share with me your own stories (below) and what they mean for you spiritually . I hope my telling will encourage and perhaps entertain, and make readers ponder.
The Wolf at my Door
I’m calling this series “the wolf at my door” because “lupus” is the word for wolf in Latin, but also because I appreciate the metaphor. I assume if I had a literal wolf at my door, I would—first of all—be frightened. In the past week I’ve encountered brief moments of terror thinking about the future. I will explore that terror. At the same time, I have always admired wolves. They are gorgeous, powerful, intelligent, caring creatures. In parts of the world, people learn to coexist with these impressive animals. Are there ways I can coexist with the wolf at my door and not resist? Especially when the experience of resistance causes more pain? I also believe the “wolf at my door” is a metaphor that applies to all of us. We all have a threatening visitor in one way or another—even if it is just mortality, the inevitable visitor. How can we help one another in the dance of non-resistance?
{Roughly 52% of Americans live with chronic illness. If you know someone who might benefit from this story, please share.}
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