Part 7: Surrender
[In part six of this series I paused to summarize my efforts so far in my quest for a diagnosis.]
Step one
We admitted that we were powerless.
A lot of people who start up in 12-step programs have trouble with the first step. Personally, I’ve always liked it.
Our lives had become unmanageable.
To me has, that has always seemed like simple statement of fact about the human condition. We are, when it comes right down to it, powerless over our unmanageable lives.
That’s not to say that I don’t often resist this truth. Like everyone else, I try to create the illusion that I’m in control of my own life.
But the wiser part of me, the existentialist in me, knows better. This part of me doesn’t believe that our lives are guided by some intrinsically meaningful forces, higher powers that are waiting to be discovered. This part of me understands that the only meaning in our lives is the meaning that we ourselves create.
People often balk at that. The idea that our existence has no meaning seems, on the surface, so negative.
But I actually find it to be a tremendously affirmative statement. Because if our lives do not come with pre-determined meaning, we have this incredible freedom to make meaning from our experience. That freedom is both invigorating and terrifying. Because, of course, along with that freedom comes a sobering responsibility.
Still, I understand that this is not the most popular way of understanding human existence. If you’re even a little bit religious, the idea that life is meaningless is…well, sacrilege. And if you’re in the 12-step world, you think of powerlessness and unmanageability as symptoms of an illness. They’re problems to be resolved, not conditions to be tolerated.
But I would argue, using a bit of Buddhist logic, that much of human suffering is not the result of our powerlessness itself, but rather that it comes as a consequence of hanging on too tightly to the illusion that we are ever other than powerless over our unmanageable lives.
To be clear (as I have said before), I’m not against religion at all. But I am deeply, profoundly agnostic. I’m not against 12-step programs either. Quite the contrary. I refer my clients to them regularly. But personally, I can never truly move on to the second step. For all the reasons I’m describing, that whole higher power thing just doesn’t sit well with me.
So my personal 12-Step program is pared down. It’s a 1-Step program. Just keep taking that first step, over and over again.
I don’t need or expect you to agree with me on this. I’m describing it simply so that you can understand the decision I was about to make for myself with regard to my own search for a diagnosis.
I took the first step. I acknowledged that I was powerless over my own diagnosability. But I needed to figure out where to go from there. Since there was no higher power to “restore me to sanity,” how could I find a way to remain in that powerless state?
I turned to the only true guide I know for dead-end situations and that is Victor Frankl, who describes so powerfully how the only absolute power we ever have is the power to shape our attitude toward our experience.
I began to ask myself: what attitude did I want to take toward my own health? What meaning could I make of it?
Homeostasis
In the Spring of this year, as the anniversary of our trip to Mayo came and went, I was settling into an awareness that there were no more doctors left for me to see. There was not a specialty I could think of that might offer any new or different perspective on my undiagnosed symptoms. It really seemed like I’d reached the end of the line.
Nothing much had changed with regard to my symptoms. They were always evolving, but they’d seemed to reach a sort of homeostasis. They ranged from annoying to worrying to occasionally debilitating, but they weren’t getting significantly better or worse. The muscle spasms had grown somewhat less intense, although they occasionally flared up. The fatigue had improved a little bit after the sleep studies, but I was still subject to intermittent bouts of overwhelming exhaustion. Most things came and went with varying degrees of intensity – the migrating neurologic symptoms, the metallic taste, the waves of “cellular” pain. The cognitive fog was probably the most constant and bothersome symptom. I felt constantly at a slight remove from everyone around me, and most of the time it was just plain hard to think.
So things weren’t great. But they also didn’t seem dire. It seemed likely that I could go on living like this indefinitely.
And I’d grown so tired of going to doctors.
So I began to ask myself: what if this is it? What if the answer is that there is no answer? What if this condition is truly undiagnosable?
I confess that I felt some relief in allowing myself to ask this question. The cycle of hoping for an answer and not getting one had worn me down. It was mentally and physically exhausting. And, more importantly, it kept me focused inward, constantly monitoring my symptoms, which prevented me from being able to direct energy into my work and my relationships the way I wanted to.
So I began, for the first time, to let myself consider a possibility that had seemed unthinkable earlier. Perhaps this is simply the condition of my life from now on.
In the past this admission would have seemed like a weakness. Like I was quitting because things had gotten too hard for me. But the more I considered it, the more it actually seemed like the only sane approach to take. It was a way of changing the terms of my relationship to my own health. Rather than let my symptoms control me, perhaps I could decide for myself how much influence I gave my them over my own self-definition.
I accept
I asked myself what it would take for me to let go of my search for a diagnosis?
I would have to find a way to treat my symptoms with equanimity.
I would have to find a way to re-focus my energy on the future. One of the ways in which my illness had affected my thinking was that it limited my awareness of my own future potential. It had narrowed my vision, kept me from attending well to any long-term goals.
And more than anything, I would have to find a way to take a positive attitude toward my own life. I’d spent so much time wondering about the ways in which my existence might be curtailed…it would be a significant shift to focus instead on what was possible.
I understood the techniques for making this cognitive shift. After all, I taught them to my psychotherapy patients all the time. And I practiced them in my own half-assed but heart-felt meditation practice. It was a matter of mindfully attending to the ways in which I held my symptoms in mind. Trying not to attach to those symptoms as the definition of my entire being. Instead, I could just notice them and let them go.
When I felt a muscle spasm, for instance, what did my mind do with it? I had a choice about how much emphasis I gave it. I could start scanning anxiously for other spasms, reviewing when and where they occurred. I could make spasms the filter through which I understood the world.
Or I could just let it go.
I received some unexpected assistance in this work of shifting my thinking from my weekly yin yoga class. Yin yoga was one of the few things that had actually made me feel better during all of this. It’s a practice which emphasizes the slow stretching of the body’s connective tissues. Most of it is done on the floor. A pose might be nothing more than a simple, forward fold, held for four or five minutes. You try to relax your muscles, to give yourself access to the deeper tissues. It has helped me in ways that seem to me to be beyond words.
At the beginning of one class the instructor had us do a very simple breathing exercise. Breathe in deeply. Then exhale. And at the bottom of the exhale, the pause before the next breath began, say to yourself: “I accept.”
She didn’t give any instructions on how to direct that acceptance. But I felt immediately what it was that I was needing to accept. And breath after breath, as I spoke those silent words to myself, I sunk deeper into the awareness that acceptance was what I needed more than anything. I was on the edge of tears. This is the state of my life, of my body, of my mind. This is my existence. This is what is.
I accept.
The bottleneck
I made a list at the things I wanted to accomplish in the near future.
In addition to everyday household and parental tasks and the work of maintaining my private practice, most of my list involved things I wanted to do to begin promoting my upcoming book. I wanted to put together proposals for presentations I could make at conferences. I wanted to produce a short video. And I had a fantasy of composing music for some or all of the chapters in the book.
All of these things had come to feel overwhelming to me. Before my health had gone south – before, especially, the brain fog had set in – I could have moved through each of these tasks fairly quickly. I would have been able feel the satisfaction of completion. Now I was going to have to learn to take satisfaction in much smaller steps. In order to feel like I was moving forward, I was going to have to look at these things with a much longer time frame.
Because the simple truth was, I didn’t know, day by day, just how much energy and concentration I’d be able to muster. I usually had a few decent hours in the morning, but the afternoons were a total crapshoot. There were often times when I had two or three open hours to work in the afternoon, but when I sat down to do it, my mind simply froze. I would read the same sentence in a book dozens of times without being able to move forward. I would stare at my notebook, unable to conjure a single coherent thought.
In the past I would have been able to power through these blocks. Because of this habit, it took me quite awhile to realize that things had changed. It was exceedingly difficult for me to accept that it was pointless to try to keep trying. But it was true. When I felt like this, the best thing I could do was to lay down and take a nap. That, I slowly came to understand, was what my mind and body were really needing.
I felt it in my psychotherapy practice as well. Mercifully my caseload was very small at this time and limited to the mornings. Because seeing just two clients in a morning pretty much wore me out.
It was, as my wife kept saying to my doctors, as if I was about to turn 70 instead of 50.
The way I experienced it, it was as if my creative energy had once flowed through a broad pipe, but now one end of that pipe had narrowed into a very small funnel. There was only so much I could get through that bottleneck at a time. I had to develop a lot more patience, and also a bit more faith in my own ability to persist at a project that was moving in slow-motion.
Often I’d sit down to start writing (a piece like this, for instance, which I imagined I would post at least a week early than I actually am), and I’d find that my mind simply refused to function. I simply had to accept this limitation. I wasn’t going to finish the piece that day. It would get done when it got done. I wasn’t going to give up on it, but I wasn’t going to push myself to do what wasn’t possible.
Slowly, day by day, I found a way to accept this new reality. I learned to appreciate how much I was actually able to do, over time, in spite of how I felt. And that wasn’t just happy talk. It genuinely felt good.
The more I was able to get myself into this frame of mind, the more I felt relieved not to be spending all my mental energy focused on my health. I was able, with effort, to think of myself less as someone who was sick, and more as a person who was maintaining a small, successful psychotherapy practice, who was composing music and doing everything he could to promote his forthcoming book.
One last test
So there I was.
I was pretty much at peace. I wasn’t happy not to have a diagnosis. I wasn’t happy with the limitations I experienced. But I knew that I could move on with my life. Maybe things would get better. Maybe they’d get worse. Either way, there wasn’t much I could do about it. I had come to accept that I was powerless over my undiagnosability.
And this was where this story was supposed to end.
But then my wife opened another door.
While visiting her sister in upstate New York, she’d met a woman who called herself a healer. This woman offered to try to diagnose my condition through my wife’s energy. My wife agreed and at the end of the session the healer told her that I had babesiosis. I felt weary at the word. I didn’t know what it was, but I felt overwhelmed by the mere idea of starting up again on another fruitless quest to get a diagnosis.
My wife expected me to be skeptical and I was. The arguments spun around in my head. I’d started down this path so many times. How could this possibly be a proper way to diagnose anybody?
But then again, I told myself, if I was open to having chickens sacrificed in my kitchen, I ought to stay open to this as well. I looked up babesiosis and learned that it was a tick-borne infection that commonly co-occurred with Lyme Disease. The symptoms resembled those of Malaria. My symptoms weren’t malarial. And I’d already had a test for Lyme. Upstate New York was Lyme Disease territory, so of course that’s the sort of thing she’d come up with. I’d never heard of anyone with Lyme in Montana. It just seemed sort of wacky.
Still, my wife said, what’s the harm in getting you tested for it?
She was right. What was the harm in that?
[Part eight of this series will describe the unexpected turn of events that began with this "final" test.]
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