Note: **A version of this letter was sent to a group of good friends last week and I have been encouraged by their responses to share this story wider.**
Dear Friends, Sisters, Co-Conspirators and Collaborators Divine—
I miss you.
This is a very hard letter to write. It has taken me months to even begin. Maybe you know already that I’ve been quiet, absent, underground. Here is the reason: This winter I was finally diagnosed with a handful of things after years of ebb and flow, illness and wellness. The diagnosis came about due to a severe relapse of a condition I now know has a name—actually, confusingly, several:
Myalgic Encephalomeylitis, Systemic Exertion Intolerance Disease, Chronic Fatigue Syndrome.
This diagnosis is both gift and terror. If you are unfamiliar with ME/CFS I’ve included some links at the end of this letter including a TED talk with activist and filmmaker Jennifer Brea. I hope you will take a moment to look/listen/read, as one of the biggest and most heartbreaking issues with this illness is its devastating invisiblity. That and the fact that many people believe, if they know anything at all, that it is primarily psychological. Which sucks, because I can assure you the symptoms are overwhelmingly physical.
I thought about keeping this journey private because it is embarrassing, intimate and also for the past five months I was too sick to write, to work, sometimes even to read.
But private is alone. Private is lonely and induces other myriad symptoms including depression and anxiety—two other diagnoses that have piled on me this winter. Private means I nourish my own isolation and misunderstanding, and maybe yours too.
So I am sharing my story in the way I have shared so many others, in the hopes, always, of mutual nourishment, healing connections and resource revelation. I share it because I am super vulnerable and fragile right now. I share it because I need help figuring out how to live in a new way. I’ve only ever lived as if I were well, even if I wasn’t. Now I know I am unwell, and I need to live toward balance and wellness.
For years I’ve been faking wellness, putting on a good show—after all for most of the past decade I’ve suffered while looking perfectly healthy. Those of you who know me better, or have worked with me know that I’m at best inconsistent. The last four years of self-employment were a bronco ride of push and buck—sounds invigorating but to a body depleted it was hell. I would perform a ceremony, teach a class or have a day of consulting and wake the next morning horribly hungover:
Brain heavy foggy and snail slow
Sensitive to light and noise
Sensitive to fabric, food and touch
Aching in my joints
And I don’t even drink.
Sometimes these “energy hangovers” would last for days. Sometimes weeks. Right now I’ve been in relapse since October, which means the last time I was able to function normally without needing to lie down to recover from a shower, or as a prelude to making dinner, was six months ago.
I compensated the best I could. One thing about being weird (See the definition at the end of this letter for context) is you just assume all trials are the result your weirdness. My life is, without question, full. In addition to external work over the past four years I also had home-work, three children, a long-distance parenting issue and an atypical menagerie of traumatic life events.
But I often needed to reschedule clients, rearrange my whole calendar, to give myself space to recover from one class, or one full day of work. This is the “exertion intolerance” of SEID. After completing a class series I would be toast for a while. Socially I have been limited because my work and my family interactions depleted me so much I was too exhausted to hang out with friends.
So what does someone who can hardly tolerate consistent work or normal friendship do to make their life easier?
Why, start a PhD program, of course!
Some dreams die. They have to.
My dream was to complete my PhD in Philosophy and Religion with an emphasis in Women’s Spirituality and continue an academic career integrating my art and writing with the freedom of a new discipline. Freed from the confines of the English Department I would be able to have some of the things that eluded me for years: like income stability, health benefits, a retirement fund. All while doing what I love most: connecting people to the earth and each other through writing, art and experiential education. (I had a spirit tell me in a dream this was my life’s purpose.)
Last spring I was offered a one-year sabbatical replacement position at Pacific University. It was an opportunity for me to return to university teaching in a bite-sized, low-commitment way.
When I said yes to this job, I wasn’t well. It had been a hard winter. My children suffered a devastating loss when their father’s wife, their stepmother, died of cancer. The stress caused me to have what I now know was a major relapse. I was visiting doctors all spring. I don’t mesh with most doctors so seeing them is like dating them…it often doesn’t work out. The last doctor I visited was rude and impersonal. She handed me some information about adjustment disorder, basically saying that my symptoms and exhaustion were all psychological, and then neglected to follow up in any way.
I changed doctors, and said yes to the teaching job at Pacific. We needed the money, the benefits, and I figured it would be a good test for me.
It was, that. A good test.
Aside: I love teaching. Absoutley love it. The students that come through Pacific are amazing, insightful, potent and most importantly open, willing.
But I was getting up at 4:30, driving to Forest Grove an hour away to teach at 8am three days a week. In the days between I was finishing with clients I’d begun working with through the summer. On Fridays I would finish class at 1:00, drive home by 2:00, pick up my kids at 2:30 to drive to Salem in traffic to meet their dad. On Sundays I drove to Salem to pick my kids up. Meaning I had only one day a week to restore or recover from teaching.
By October I started going down. I was sleeping twelve hours a night and crying into my coffee every morning because I was so impossibly tired. By November I was in a major depression.
But I saw the semester through, somehow. In late December my doctor, a good one I’d been seeing since the fall with complaints of mind-crushing fatigue, pulled up the diagnostic criteria for Chronic Fatigue Syndrome.
And then…that’s how my stepdaughter continues all of her stories…and then…
And then I ended up in bed for two weeks straight, unable to teach my January class. And then I realized there was no way in anyone’s anyplace that I would be able to teach in Spring term. I had to give up my classes.
I had to give up my PhD program.
I had to surrender to the will of my body.
Some dreams die.
Every day I wake up hoping that I will feel better. Some days I do. But better is unpredictable. Better in my past always meant do as much as possible.
Better now means build reserves for another day, and if you don’t anticipate correctly the amount of energy you have available, you pay.
Even the good, beautiful, sacred things can be exhausting.
It is, right now, hard to feel hopeful.
In the external world, so many of us are screaming to be heard. That’s why I’m writing. It is a prayer that someone will hear.
Some dreams die. This illness is a death.
What comes next is mystery.
So, dear friends, sweet community, sacred sisters near and far, I need your help. Please don’t disappear into my silence. Please stay close, remind me that life can be joyful and the world hopeful. Please be patient when I am delayed in responding to your emails, texts or calls. Please understand when I can’t hang out in person, or attend your event. If you let me know about your life I will send blessings. I still want and need to hear from you.
Former clients and students, I ask you to please forgive my past transgressions—appointments and classes canceled, commitments unfulfilled, plans laid awry. This rebellious body was trying to send me a message and I could not, would not hear it. I am sorry for any harm I have caused you, and am reminded that self-care first is not just a mantra, it is a lifestyle of necessity.
I also haven’t found any reliable support. I am currently without an income, which makes things super challenging. If you have any connections to free resources or healers who do volunteer work I am totally open.
And for anyone who has reached the end of this very long letter, thank you with my whole heart for taking the time. I know time is precious, energy invaluable.
I send my love.
Jennifer Brea’s TED Talk: What happens when you have a disease doctors can’t diagnose?:
CDC: Chronic Fatigue Syndrome
“More than one million Americans have CFS. This illness strikes more people in the United States than multiple sclerosis, lupus, and many forms of cancer…it occurs four times as frequently in women as in men.”