Mysterious Illnesses: CFIDS, CFS, ME, FM, Lyme’s, and the Whole Weird-Body-Chemistry Neuroimmune Crew
This is the story of how I dropped hundreds of symptoms from a disease that’s supposed to be incurable.
It’s also a resource for you to use on your own healing journey.
Your own story will be different.
This is the first video in a series I’ll be putting up pretty soon. Until then, this is an introduction to what’s possible when you have a disease everyone says is incurable.
Like many of you, my prognosis was “progressive and incurable”. Meaning: you get worse and then you die.
But somehow I just couldn’t feel that this applied to me.
And as it’s turning out, it doesn’t.
How did I drop all those symptoms? By making a change in direction. In order to get better, I had to get even more weird and mysterious than my disease.
I have been traveling with CFIDS for ten years, since before I even knew what all those weird feeling and reactions were. For a couple of years there, I got very, very close to dead.
I have known many days when speaking and walking and eating were impossibilities, when I counted every lift of the hand and turn of the head as energy expended – and I needed to, because I had only so many of those in me in a day. I have known years of constant nausea and painful gut cramps that just never let up. I am among the elect that has learned to crawl to the bathroom, because the alternative was passing out. I have been through night after night where sleep would not come, only a zombie-like haze, no matter how exhausted I felt. And I have been through many, many days when I wondered if the pain and misery would send me over the edge, when I WANTED it to send me over the edge, so I could just die, and have peace at last. And some sleep.
No, I didn’t have a “light case”.
No, it wasn’t really something else, like adrenal fatigue (although I had that too) or general run-downness. I had the classic symptoms of CFIDS/CFS/ME.
And if I’m having a remission, there’s absolutely nothing spontaneous about it: it’s taken years of consistent focus and practice.
I am not returning to a previous condition, which is what remission implies. What I’m doing is getting a new life. A life that’s actually easier and more full of possibilities than it was before. Easier emotionally, mentally, spiritually, and yes, even physically in many ways – still got a way to go with that one. But while I have my ups and downs, every week shows me new ways I’ve become more vital, more able, more at ease in the world.
My change in direction has often reminded me of that bit in the Inferno, where Virgil is leading Dante out of hell. Satan is in the bottom of the pit of hell, like a plug in a sink drain, and you have to climb over him to make your way out.
At one point, Virgil turns around, and Dante says, “Wait! Aren’t we going the wrong direction? Aren’t we just going back the way we came?” Virgil tells him that, in hell, things are not what they seem; that he has been through this before and knows the way. It doesn’t make sense to Dante, but he doesn’t know what else to do, so he follows Virgil in what seems like the totally wrong direction. As they go through a long nasty confusing chokingly smelly journey, he doubts that he will ever be released and fears that he will die a horrible death. But in the end, he finds himself delivered from hell.
I started getting better by taking my intuition for my guide, and allowing what remained of my rational self to follow it. It didn’t make any sense to me, but then, my whole situation made no sense to me. I stopped trying to figure things out. It didn’t work, anyway. I found that out the hard way.
When I first started on the journey of this illness, I was DEVOTED to Figuring It Out. I had the skills for it. Leaving aside false modesty, before I got ill I spent many many thousands of hours researching and analyzing and categorizing and synthesizing information: I was good at it.
For three years, I did tons of research: alternative, conventional, you name it. I tried out dozens of theories, some of them by people with big reputations. Some of them gave me tiny bits of symptom mitigation. Most of them made me worse, not better. Intellectual theories just don’t cut it in complex multisystem diseases. Don’t get me wrong, I’m deeply grateful to have my intellectual facility coming back – but now I am coming to recognize it as a lovely side attraction, not the Ruling Power.
As I grew less and less able to do other things, I made research on my illness my life’s work. I am not saying that all that research was useless – some of it has been vital to me. But using research alone, I just kept getting worse and worse. No matter how many protocols I tried. No matter how many theories I wove together. I learned a lot, but my life got more and more hellish, until, finally, I descended into a foggy, inchoate nightmare where I could barely research at all. Barely even speak.
It was when I started following my intuition – what else did I have left? – that my symptoms began to fade Just a little at first. I had to pay minute attention to even notice the difference. But now, I’m dropping symptoms right and left, becoming vital, able to do things that would have been impossibilities two years ago – or even one. A lot of times, it means going in a direction that seems plain crazy, according to my intellectual training.
Maybe I had to lose almost all my cognition to get here. Maybe I was just that stubborn. Because logic was getting in the way of my healing. What has healed me, and is healing me, is not logic, but something much larger, something I found through cutting-edge science and energy healing and being curious about the mysterious.
Yes, I know to some of you, maybe many of you, this will sound like a report from weird-land. Maybe it is, but c’mon, honestly, aren’t you in weird-land with me? Take a look at what you pay attention to in your life, at what your life consists of, and tell me it isn’t true!
And if you are skeptical – good! you still have brains enough left to be skeptical. I applaud you. And I would suggest that you might benefit from some of the cutting-edge science that is now beginning to tell the story, in science-language, of what energy healers and mystics have known for millennia.
Looking at the relevant science has helped my skeptic a lot. So has looking up “skeptic” The word comes from a Greek word meaning “to look out; to consider”, related to words meaning “to look, watchman”.
If you’re on watch, you’re looking at and considering the whole landscape, not just a narrow part of it. So, if you are a skeptic, definitely question what I say – but you might also want to ask these questions: how much has conventional medical science actually helped you? How far has it taken you in your healing? How many people have you heard of who have your condition, and have been helped by medical science? How far were they able to go with it? How long are you willing to wait for medical science to find an answer for you?
Are you willing to experiment outside the box, to consider the entire landscape and see if there’s anything more for you? Are you willing to expand through the box of thinking into something that includes it, but is deeper and more fulfilling?
You don’t have to believe in any of this stuff to experiment with it. Please, don’t believe me. Check it out for yourself. In fact, I’d encourage you to start disentangling from belief altogether. Even from believing in yourself.
Beliefs limit possibilities, because they can only work along the lines of what you already know. And what I am suggesting is that you venture beyond the bounds of what you think you know. Even beyond the bounds of what our society thinks it knows.
I’m not suggesting that you ignore symptoms, here – as if it were possible, when they’re knocking you to the ground and then kicking you in the head! It’s more a matter of gently shifting perspective on them. Of making the choice, whenever we can, to tune into healing instead of tuning into symptoms. (There’s an important difference there.)
The exciting part, for me, is that the process of healing my illness has become the process of how to heal the much greater illness, the basic unhappiness and fear and self-destructiveness that I’ve found in me and the larger culture I live in. That is what happens when you start going beyond belief. I invite you to join me.
My plan is to keep adding resources to this page. What would interest you? Feel free to email me and with suggestions, or to ask questions: firstname.lastname@example.org. I may answer them by writing a blog post on what seems to be of most interest.
Or, check out the Testimonials page to see some of the ways I’ve been able to help others. (I would have more physical-healing experiences there, but I did a lot of this work before I knew to ask permission to put their results on my website. In any case, as you probably know, working successfully with emotional issues means I’m working successfully with body chemistry and neurology: it’s really all the same stuff.)