Photo: Stacey Couch and her horse “Isabeau”. Photo credit: Estella O’Connell
Hiding Behind the Teaching
My career began centered around a memoir. My story opened up doors to spiritual insights. I stepped through those doors to share with others. Over time, my focus shifted from sharing to listening. I embraced the role of transparent messenger. To write down “I” has become uncomfortable again.
Spiritual correctness, which is similar to political correctness, says to drop the ego. In life and work, I practice the importance of releasing the “I” and this helps. However, it also becomes a shield to vulnerability. Conscious releasing of the self became hiding. Spiritual correctness is when we take any spiritual teaching and get dogmatic. When say the annihilation of the “I” is the only way, we lose our way.
So here I am – lost and finding my way back to you. There is one story I have been hiding for seven years. They call it an invisible illness, so my work of staying undetected is easy. Family doctors can’t see it. Friends and family don’t know what’s going on. Researchers are just beginning to find scientific indicators of the disease.
I can’t tell you how many people have said to me, “Oh, isn’t that what doctors diagnose you with when they can’t figure out what’s going on?” As if my experience is something thrown in the discard basket. I’m with the leftovers right next to the unmatched sock in the lost and found. Maybe someday someone will get around to doing something with me.
I have ME/CFS
I have ME/CFS. Not familiar with the name? Most people know it as Chronic Fatigue Syndrome. Syndrome means a “concurrence of symptoms,” which this disease has, but the chronic fatigue portion of the name hasn’t garnered much respect. “ME” is the newer nomenclature and more telling of the severity of the disease. It is myalgic encephalomyelitis, which roughly means muscle pain (myalgia) with neurologic system inflammation (encephalo- (relating to the brain) myelitis (inflammation)).
My aim is not to educate you about the disease. Let the researchers at Harvard, Cornell, Stanford, and Oxford University do that. I put links at the bottom of this article if you want to learn more. I am not happy about much about this disease, but I am glad for all the great minds solving this puzzle. My aim is to help raise awareness about its impact and prevalence.
It may seem extreme to talk about my condition as suffering. There is a risk of appearing like I’m playing the victim. All I can say is, “This is serious. I’m not playing.”
May 12th is International ME/CFS Awareness Day. I hope to contribute to awareness through sharing my story.
Pain is My Companion
Not a day goes by that I don’t hurt. I used to be able to spend hours on my feet fixing fences or gathering firewood. I could walk around my pasture for hours playing with my horses. Hikes were easy. I could eat whatever was served. It felt good to exert myself and get my heart pumping. I slept like a log – every night. When I sat to meditate, it was quiet. I spent many hours a day writing and creating. I recorded videos, wrote blog posts and produced online classes. In my free time, I drew, gardened, and cooked. I was a vast vessel into which life poured and from which I poured life.
Then I got a common cold like I’d had dozens of times before, but I never got better. Weeks turned into months. Symptoms started to stack up. What was this ringing in my ears that wouldn’t cease? How come my throat is still sore? What’s the deal with all these stomach aches? Am I getting sick again? Where is my energy going? I seem to ache a lot. Why do I wake up in the middle of the night on fire? I can’t think straight. Something’s wrong.
Next came the many year’s search for reason why I was sick. I dug through my past – ten times. I cleared out all my interior closets and made amends. Addressing possible psychological and spiritual causes of the illness didn’t work. I took homeopathics and spent thousands of dollars on herbs and supplements. Neither traditional or alternative doctors or healers were able to help much.
My menu shrank – no yeast, no gluten, no corn, no sulfites, and on and on. My family grew tired of not being able to share meals with me. I gave up alcohol and caffeine years ago.
It Gets Worse
I am not writing to tell you how I healed myself, so I can lead the way to wellness. Hang in there. It gets worse.
Today, I can’t go up a flight of stairs without stopping once or twice to catch my breath. If I am lucky, I might sleep through the night once a month. I can’t ride my horse for ten minutes once a week without getting wiped out. I have to sit down to recover after changing my son’s diaper. The creative projects that used to take me a few hours, I now patch together over the course of weeks. The pain is debilitating and relentless. The sheer exhaustion is a close second.
This is not a cry for advise or help. I don’t need you to fix my problem. This is a call to awareness. Millions of people are sick all over the world with ME/CFS. There is no proven treatment to lessen symptoms. No cure is in sight. I read the other day that only six percent of people go into remission. Those odds suck.
Research into ME/CFS is severely underfunded. Sick people don’t receive nearly enough support. Some people are bedridden and others are housebound. Many are not able to work. This is one of the few diseases that gets worse with exercise. Both physical and mental exertion take a ridiculous toll on the body. I have had to limit my office hours and greatly reduce activities. I am operating at around forty to sixty percent of my former capacity.
A Blessed Life
Working in the spirituality field is a blessing for me in this illness. I have so many touch points of grace to get me through the day. I live an inspired life. This work allows me a freedom of creativity unmatched in any other time in my life. My interactions are filled with radiant people in sacred practice. It is stunning really, to be in the circle of such love. I love what I do.
This work and this illness have come together to reveal something fundamental about the human experience. Everyone is suffering in ways big and small. You could have told me that before all this began and I would have believed you. However, there is a huge difference between knowing and living a thing.
Being on the receiving end of invisible pain, I know what it feels like to suffer in private. People expect me to simply pick up my child and carry him across the room, and I can’t without crashing for hours. Family members think I will get my own dinner until I say I can’t bear another moment on my feet. Clients expect I’ll be able to get them on my schedule when they need. Friends assume I can sit and talk for hours.
It’s not because people don’t care. It’s because they can’t see.
In every conversation, I remember that the person I am talking to could be suffering and I don’t know. This goes for grocery clerks as well as friends and clients at the same time as postal workers. My weary heart sees them all.
There’s No Reason For It
Working in the spirituality field is a curse for me in this illness. There is a subversive myth that spiritual guides have life pretty well sorted out. The story goes that a spiritual teacher spends years working on herself to get better before she goes to minister to others. This story of perfectionism has to go. It is holding our teachers and ourselves to an unrealistic expectation. It equates physical health with spiritual health.
Some of the most spiritually well people I know are gravely ill. There are emotional, mental and spiritual roots to physical illnesses, but not always. There doesn’t have to be an untended trauma or deep-seated anger to trigger disease. Depravity of spirit absolutely leads to a physical health crisis, but not every time. Sure, your family history, past lives, and karmic debt can make you sick. These broken states can cause a body to break down, but we can’t always find a pathology.
In this field, seekers try to find a good reason for being sick. I don’t think there’s any good reason for suffering. It’s not reasonable that people should hurt.
A Heart Too Soft to Try
For years, I’ve allowed my illness to hide because I feared judgement. I was afraid that people would automatically assume I was unconscious (a curse in this business for sure). There is a good chance that some of you reading this will blame me for being sick. You may decide I haven’t truly done my work. You could believe that I won’t face my own shadow or that I feed off of the pity.
From your perspective, it could be that I haven’t tried everything. You may think you have the answer. Keep going. I’m sure there’s twenty thousand ways to guess how I created this, but if you truly understand the nature of pain, your heart is too soft to try.
I write to those of you whose hearts are broken open to suffering. I ask not for pity but for compassion. Not for me but for others. Sure pray for me. I’ve learned not to turn away a good prayer, but while you’re at it, pray for the millions of people around the world with this disease.
A Call to Slow Down
It’s time to wake up to how much we, as a collective, push ourselves. I see a parallel between the energy crisis in patients like me and the energy crisis on the planet. We are running out of resources like oil, food, and water. Mothers are at the brink of exhaustion. Service staff have dark circles under their eyes. Some of you are working hard to get by and others of you are working hard on yourselves. How many times do you say you’re running on fumes? Our planet is fatigued and so are we.
Symbolically, I see people with ME/CFS as the canaries in the coal mine. At the leading edge of the climate crisis, we are heating up. Inflammation of the nervous system is big in this disease. Patients get brain fog and can’t think straight. Humanity overwhelms their inner circuitry with too much internet data and is over stimulated by screens. ME/CFS sufferers have to wear ear plugs and eye masks to sleep. Humanity is attacking the planet with toxins and bulldozers. People with ME/CFS have an immune system on high alert, trying to clear out an invisible intruder.
Maybe I will write a future post about the archetypes involved in ME/CFS. It’s a side project of mine in slow development. My point here is this – what we do to the planet and to ourselves, we do to the whole. Your furious pace has consequences. Hear the call to slow down. It helps more than you know.
One Purpose of ME/CFS
I believe that bringing a slow pace is part of the purpose of patients of ME/CFS. We are not doing it by choice, but we’re doing it regardless. We provide a balancing force to the rigorous busyness of the world. Our forced sluggishness brings back what is essential. The extreme ascetic lifestyle that comes with ME/CFS is purifying. I no longer identify with what I eat or how much I produce. I don’t like that I have to pace myself so strictly and say “no” to so many things. However, I also know my lower consumption is reducing my impact on the earth.
There is a lot of talk in the spiritual community about getting “back to the earth,” but we can’t do this at breakneck speed. We have to pause, rest and listen. You may have a friend with ME/CFS that can teach you a thing or two about ease. She’s come by this practice the hard way, but I bet she knows it better than anyone. People with ME/CFS often think they don’t have anything to offer the world because they are stuck at home unable to produce. I disagree.
There is deep meaning in the forced call to slow down for ME/CFS patients. The world can learn a lot from the wisdom of these stillness practitioners. These gurus of pacing are masters of energy and body awareness. There is immense value to the act of simply being. The ME/CFS community knows this better than anyone. For being still means finding some relief.
The ME/CFS community is bringing back a much needed way of life, the gentle way of non-doing. “Being with” is the feminine way. It’s no accident that women disproportionately get this disease. The more of us with this illness that can come to embrace the intrinsic value of being, the more we contribute to the healing of the whole. Let’s pray that this healing becomes ours too.
Consider Donating to ME/CFS Research
These organizations are doing worldwide, in-depth research into diagnosis, treatment and cures. They also help raise ME/CFS awareness.
Open Medicine Foundation: https://www.omf.ngo/
Solve ME/CFS Initiative: https://solvecfs.org/donate/
#MEAction Network: https://www.meaction.net/
Links to ME/CFS Resources