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 existentialistin 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.]
If you watch “House, M.D.,” you’re familiar with those meetings in which the doctors put all patient’s known information on a board, which they then study for hidden patterns. Here’s what the board looked like for me as I began writing this series.
Doctors and other medical professionals who have examined and treated me
Internist
Endocrinologist
Cardiologist
Oncologist
Gastroenterologist
Neurologist(s)
Physical therapist
Nutritionist
Allergist
Rheumatologist
Sleep specialist
Blood tests performed
Multiple tests over 2+ years, for a variety of conditions, including: hormone functioning (testosterone and thyroid levels), rheumatoid arthritis, Epstein Barr, heavy metals, Lyme Disease (ELISA), Myasthenia Gravis. In addition to tests for specific conditions, a wide range of standard indicators were tested. With the exception of a light elevation in my liver enzymes, probably the result of the statins I take to manage my cholesterol, all of these tests came out negative.
Other tests performed
Stress echochardiogram
Esophagogastroduodenoscopy (EGD)
Ultrasound of thyroid
CAT scan – abdominal
MRI scans – brain, cervical spine, lumbar spine
Electromyography (EMG) and nerve conduction test (2)
Autonomic reflex scan (QSART)
Thermoregulatory sweat test
Nocurnal oxymetry
Nocturnal polysomnogram (2)
Results of these tests
A few small spots showed up on the CAT scan, almost certainly benign but worth tracking due to my cancer history.
Mild disk degeneration showed up on the MRI.
Mild carpal tunnel syndrome showed up on the EMGs.
Some autonomic neuropathy in my feet was found in the thermoregulatory sweat test.
Sleep studies (not discussed in prior posts) showed a low level of sleep apnea – hypopnea – which has been effectively treated with a sub-clinical dose of amitriptyline.
A few of the illnesses and conditions that seemed to have been ruled out by these tests
ALS, MS, Parkinson’s, Multiple Myeloma, Celiac Disease, Lyme Disease, heavy metal poisoning, Chronic Inflammatory Demyelinating Polyneuropathy, Rheumatoid Arthritis, HIV/AIDS, a recurrence of Cancer, including Paraneoplastic Syndrome, Autonomic Nervous System disorders including Postural Orthostatic Tachycardia Syndrome, Cardiac disorders of any nature, Polymyositis, Amyloidosis, Whipple’s Disease, Giardia.
Treatment suggested by the medical professionals after reviewing these tests
Physical therapy
Psychotherapy
Alternative treatments I’ve explored
Acupuncture
Chinese herbs
Therapeutic massage (Rosen method)
Yin yoga.
Hmong shamanic healing ceremony
Symptoms
As of mid-summer, 2010. Many of these have been describe in previous posts, some of them are new or have evolved.
Perceived muscle weakness
Exercise intolerance
Orthostatic hypotension Occasional intense light-headedness when rising from a sitting or crouching position.
Episodes that mimic hypoglycemia Which include but go beyond the light-headedness described above.
Fatigue fluctuating in intensity but nearly always present to some degree, and intermittently crushing. It’s usually pretty bad in the afternoon (so I try to get as much work as I can done in the mornings). I find that I do reasonably well when I get ten hours of sleep (less than that and all the other symptoms get worse), and/or when I have the opportunity to nap in the afternoon.
Pain Migratory and fluctuating in intensity. It is most commonly a diffuse sort of pain which I can only describe as “cellular” – meaning that it feels like it’s an accumulation of pain emanating from all of my cells. So rather than being focused in one part of my body, it feels more like a cloud of pain that engulfs me. It’s a bit like the ache you get with the flu, but it’s not even as focused as that. In addition to this diffuse, cellular pain, I also get more acute, focused but migratory pain in my joints and muscles. Sometimes it feels clearly like nerve pain – shooting, electrical shocks that hit the tops of my feet or my thighs or my upper arms. Other times it’s just a regular old pain, like the ache you feel after having been punched.
Neck pain I separate this from the rest of the pain because it is a recent development and because it has a different quality. I first noticed it late in the Spring during my yoga class. I thought that I had strained a muscle in my neck. But it hasn’t eased off, the way a pulled muscle does. Rather, it’s gotten worse.
Sexual dysfunction My earliest symptom has remained, although my understanding of it has evolved somewhat. Rather than being a circulatory issue, it feels clear to me that the larger issue is that the bottom has dropped out on my libido. While my body is capable of achieving an erection, there’s little or no fuel available with which to kindle or sustain a sexual fire. In other words, it still feels like a hormonal issue. Even though my testosterone and thyroid levels have been supplemented until their blood levels are optimal.
Weight changes From a high of 187 pounds in January of 2009, I reached a low of 157 in June of that year. Since that time I’ve gradually regained much of that weight and I’m currently in the 175-180 range. The changes in my physique have remained, however. The muscles in my arms and legs look different than they used to in ways that are difficult to describe. It’s hard to say whether the muscles are more defined, or the spaces between them are less so. In general, my body seems bonier than it used to be.
Neurologic symptoms These are numerous and often so bizarre that it is difficult to describe them. They include:
Fasciculations Muscle twitches and spasms. Although they vary in intensity and location, they have been one of the most constant features throughout all of this. Sometimes they’re very intense, other times they’re mild. Sometimes they hammer away at one spot on my body, other times they seem to hit all over the place, randomly. Sometimes they bubble around constantly, other times they’re just sporadic, random blips.
Numbness, tingling, and buzzing This is a catch-all category for a variety of odd experiences. I have areas on my body – especially the outside of my legs below the knees, and on the tops of my feet – that feel like they have been permanently shot up with novocaine. In addition, I experience varying degrees of tingling numbness in various parts of my body, but especially in my hands and feet. When I lie down, the soles of my feet feel like they’re burning. And I’ve started to experience a distinct “buzzing” feeling which is different from both the fasciculations or the tingling or the shooting nerve pain. It’s localized and it goes off in my body the way a cell phone goes off when it’s set to “vibrate.” It’s a discrete buzz that starts and then stops and then repeats, sometimes for hours. I can get it in the base of my groin. Or in my thigh. Or anywhere.
Migraine-like aura This is a new one. I’ve only had a true migraine a few times in my life and it’s been years since the last one, but I remember well the unnerving optical sensations that preceded them, the “migraine aura.” Lately I’ve started experiencing that aura again, but without the ensuing headache. It’s like a bright, jagged stimulus hovering in my peripheral vision. It can occur on either side.
Metallic taste Started somewhere near the beginning of 2010. A strong, unpleasant taste in my mouth, usually metallic in nature. It’s not always particularly intense. It seems to come and go in cycles. But it influences me even when it’s not strong. For instance, I can no longer drink red wine. This metallic tastes gives it all a taste more or less like rubbing alcohol.
Cognitive impairment This has probably been the most distressing of all my symptoms, because I rely profoundly on the agility of my mind in my work as a writer, a teacher and a psychotherapist. The cognitive fog that I experience can take many different forms, but I notice it most in the way that it affects the pace at which I can work. I’ve always got a running list of work that I need to do, which might include writing projects, including these blog posts, developing proposals for presentations (such as the one I’ll be doing at the American Counseling Association next year), preparing for teaching (as I’m doing now for the Ethics course I’ll be teaching to counseling students this Fall). It used to be that these tasks sort of flowed by. But these days, the list stays static for long periods of times because my ability to focus clearly and think well has become a bottleneck. It takes a lot longer to get things done. I sit down to read and I simply can’t make my mind absorb the sentence in front of me. I try to write or to compose music and I find my mind to be filled with mud. Days can go by like this. It’s bad when I’m working, but it’s even worse interpersonally. Often during conversations, I feel like the mechanisms linking my thought to my speech are malfunctioning. As a result, a simple conversation can be exhausting to me. Seeing more than a few clients in a morning wipes me out. And presenting before groups, while not impossible, is very challenging, and very exhausting.
Why I don’t want to tell you any of this
What does it mean for you – for anyone – to know these things about me? This is a question I have struggled with throughout these past two years.
Although it might not be evident from this blog, I am by nature an intensely private person. I know that I don’t have much control over the ways in which other people see me, and it’s precisely because of this that I like to have as much influence as possible over the things that I can control.
Mostly this has meant playing my cards very close to my vest.
But being sick and seeking a diagnosis, necessarily puts you in front of the eyes of others. And not just expose the gaze of the medical professionals whom you seek out for help.
Once you’ve been identified as being sick, everyone looks a little more carefully at you. They scan for the illness in you. Even more so when you’re sick without a diagnosis.
This dance between exposure and concealment is even more complicated in my case because my father happened to be a doctor and because he had an intrusive gaze. To make things worse, I grew up in a monolithic religious community, a religious organization which gathered and used personal information against its membership with a Stalinist zeal.
As a result of all of this, I learned some very effective ways to hold parts of myself out of public view.
What I figured out, growing up, was that seeing into the intimate lives of others gave you information about them, and that this information could give you power over them, which could be used in tremendously harmful ways.
As a result, I have lived my life guarding information about myself very carefully. I am constantly monitoring what other people know and don’t know about me. I can’t shut this part of my mind off, even with the people I trust most deeply in the world. Some part of my mind is always keeping track of what they have on me. I am never not aware of this.
(It’s not lost on me that I have chosen a profession in which I am able to experience the extraordinary range of human passion while simultaneously revealing very little about myself. I suspect that many, if not most, of my colleagues share some version of this trait.)
So, I am writing every word of these posts while containing my anxiety that they will in some way be used against me. In the simplest version, my fears are simply that you’ll think of me as someone who is whiny, helpless, unmasculine, weak, deluded, or attention-seeking.
I have worse fears than that, of course.
But for the moment I’ll keep them to myself.
Why I’m telling you anyway
Given all of this, I’ve wondered over the past weeks just why it is that I have felt compelled to tell this story publically. One answer has been that regardless how I imagine myself being perceived by others, this is the simple truth of my experience. Another answer lies in my awareness that being undiagnosable means more than just the accumulation of symptoms and tests and conditions that I’ve described above. On some level, undiagnosability is the human condition. It’s an existential truth: so many of our questions are eternally unanswerable. Finally, I’ve been writing this because of the simple recognition that my experience is not uncommon. There are many people who are desperately seeking a name for their seemingly unnameable suffering. Telling this story doesn’t give that suffering a name, but it does give it a voice.
But there’s something more. Something deeper.
It’s this. The experience of being undiagnosable has changed me. Writing this story is a sort of coming out for me. I’ve worn myself out over the years doing all the work it takes to keep myself so carefully concealed. Somewhere in all of this experience, something has shifted in my personality. That change took place during the period I will describe in the next post, the period in which I abandoned all hope of ever getting an answer. Giving up freed me, in utterly unexpected ways.
[In part five of this series I discussed travelling to the Mayo Clinic in search of a diagnosis, and I described alternative treatments I explored.]
To sum up
If you watch “House, M.D.,” you’re familiar with those meetings in which the doctors put all patient’s known information on a board, which they then study for hidden patterns. Here’s what the board looked like for me as I began writing this series.
Doctors and other medical professionals who have examined and treated me
·Internist
·Endocrinologist
·Cardiologist
·Oncologist
·Gastroenterologist
·Neurologist(s)
·Physical therapist
·Nutritionist
·Allergist
·Rheumatologist
·Sleep specialist
Blood tests performed
Multiple tests over 2+ years, for a variety of conditions, including: hormone functioning (testosterone and thyroid levels), rheumatoid arthritis, Epstein Barr, heavy metals, Lyme Disease (ELISA), Myasthenia Gravis. In addition to tests for specific conditions, a wide range of standard indicators were tested. With the exception of a light elevation in my liver enzymes, probably the result of the statins I take to manage my cholesterol, all of these tests came out negative.
Other tests performed:
·Stress echochardiogram
·Esophagogastroduodenoscopy (EGD)
·Ultrasound of thyroid
·CAT scan – abdominal
·MRI scans – brain, cervical spine, lumbar spine
·Electromyography (EMG) and nerve conduction test (2)
·Autonomic reflex scan (QSART)
·Thermoregulatory sweat test
·Nocurnal oxymetry
·Nocturnal polysomnogram (2)
Results of these tests
·A few small spots showed up on the CAT scan, almost certainly benign but worth tracking due to my cancer history.
·Mild disk degeneration showed up on the MRI.
·Mild carpal tunnel syndrome showed up on the EMGs.
·Some autonomic neuropathy in my feet was found in the thermoregulatory sweat test.
·Sleep studies (not discussed in prior posts) showed a low level of sleep apnea – hypopnea – which has been effectively treated with a sub-clinical dose of amitriptyline.
A few of the illnesses and conditions that seemed to have been ruled out by these tests
ALS, MS, Parkinson’s, Multiple Myeloma, Celiac Disease, Lyme Disease, heavy metal poisoning, Chronic Inflammatory Demyelinating Polyneuropathy, Rheumatoid Arthritis, HIV/AIDS, a recurrence of Cancer, including Paraneoplastic Syndrome, Autonomic Nervous System disorders including Postural Orthostatic Tachycardia Syndrome, Cardiac disorders of any nature, Polymyositis, Amyloidosis, Whipple’s Disease, Giardia.
Treatment suggested by the medical professionals after reviewing these tests
·Physical therapy
·Psychotherapy
Alternative treatments I’ve explored
·Acupuncture
·Chinese herbs
·Therapeutic massage (Rosen method)
·Yin yoga.
·Hmong shamanic healing ceremony
Symptoms
As of mid-summer, 2010. Many of these have been describe in previous posts, some of them are new or have evolved.
·Perceived muscle weakness
·Exercise intolerance
·Orthostatic hypotension Occasional intense light-headedness when rising from a sitting or crouching position.
·Episodes that mimic hypoglycemia Which include but go beyond the light-headedness described above.
·Fatigue fluctuating in intensity but nearly always present to some degree, and intermittently crushing. It’s usually pretty bad in the afternoon (so I try to get as much work as I can done in the mornings). I find that I do reasonably well when I get ten hours of sleep (less than that and all the other symptoms get worse), and/or when I have the opportunity to nap in the afternoon.
·Pain Migratory and fluctuating in intensity. It is most commonly a diffuse sort of pain which I can only describe as “cellular” – meaning that it feels like it’s an accumulation of pain emanating from all of my cells. So rather than being focused in one part of my body, it feels more like a cloud of pain that engulfs me. It’s a bit like the ache you get with the flu, but it’s not even as focused as that. In addition to this diffuse, cellular pain, I also get more acute, focused but migratory pain in my joints and muscles. Sometimes it feels clearly like nerve pain – shooting, electrical shocks that hit the tops of my feet or my thighs or my upper arms. Other times it’s just a regular old pain, like the ache you feel after having been punched.
·Neck pain I separate this from the rest of the pain because it is a recent development and because it has a different quality. I first noticed it late in the Spring during my yoga class. I thought that I had strained a muscle in my neck. But it hasn’t eased off, the way a pulled muscle does. Rather, it’s gotten worse.
·Weight changes From a high of 187 pounds in January of 2009, I reached a low of 157 in June of that year. Since that time I’ve gradually regained much of that weight and I’m currently in the 175-180 range. The changes in my physique have remained, however. The muscles in my arms and legs look different than they used to in ways that are difficult to describe. It’s hard to say whether the muscles are more defined, or the spaces between them are less so. In general, my body seems bonier than it used to be.
·Neurologic symptoms These are numerous and often so bizarre that it is difficult to describe them. They include:
oFasciculations Muscle twitches and spasms. Although they vary in intensity and location, they have been one of the most constant features throughout all of this. Sometimes they’re very intense, other times they’re mild. Sometimes they hammer away at one spot on my body, other times they seem to hit all over the place, randomly. Sometimes they bubble around constantly, other times they’re just sporadic, random blips.
oNumbness, tingling, and buzzing This is a catch-all category for a variety of odd experiences. I have areas on my body – especially the outside of my legs below the knees, and on the tops of my feet – that feel like they have been permanently shot up with novocaine. In addition, I experience varying degrees of tingling numbness in various parts of my body, but especially in my hands and feet. When I lie down, the soles of my feet feel like they’re burning. And I’ve started to experience a distinct “buzzing” feeling which is different from both the fasciculations or the tingling or the shooting nerve pain. It’s localized and it goes off in my body the way a cell phone goes off when it’s set to “vibrate.” It’s a discrete buzz that starts and then stops and then repeats, sometimes for hours. I can get it in the base of my groin. Or in my thigh. Or anywhere.
oMigraine-like aura This is a new one. I’ve only had a true migraine a few times in my life and it’s been years since the last one, but I remember well the unnerving optical sensations that preceded them, the “migraine aura.” Lately I’ve started experiencing that aura again, but without the ensuing headache. It’s like a bright, jagged stimulus hovering in my peripheral vision. It can occur on either side.
·Cognitive impairment This has probably been the most distressing of all my symptoms, because I rely profoundly on the agility of my mind in my work as a writer, a teacher and a psychotherapist. The cognitive fog that I experience can take many different forms, but I notice it most in the way that it affects the pace at which I can work. I’ve always got a running list of work that I need to do, which might include writing projects, including these blog posts, developing proposals for presentations (such as the one I’ll be doing at the American Counseling Association next year), preparing for teaching (as I’m doing now for the Ethics course I’ll be teaching to counseling students this Fall). It used to be that these tasks sort of flowed by. But these days, the list stays static for long periods of times because my ability to focus clearly and think well has become a bottleneck. It takes a lot longer to get things done. I sit down to read and I simply can’t make my mind absorb the sentence in front of me. I try to write or to compose music and I find my mind to be filled with mud. Days can go by like this. It’s bad when I’m working, but it’s even worse interpersonally. Often during conversations, I feel like the mechanisms linking my thought to my speech are malfunctioning. As a result, a simple conversation can be exhausting to me. Seeing more than a few clients in a morning wipes me out. And presenting before groups, while not impossible, is very challenging, and very exhausting.
Why I don’t want to tell you any of this
What does it mean for you – for anyone – to know these things about me? This is a question I have struggled with throughout these past two years.
Although it might not be evident from this blog, I am by nature an intensely private person. I know that I don’t have much control over the ways in which other people see me, and it’s precisely because of this that I like to have as much influence as possible over the things that I can control.
Mostly this has meant playing my cards very close to my vest.
But being sick and seeking a diagnosis, necessarily puts you in front of the eyes of others. And not just expose the gaze of the medical professionals whom you seek out for help.
Once you’ve been identified as being sick, everyone looks a little more carefully at you. They scan for the illness in you. Even more so when you’re sick without a diagnosis.
This dance between exposure and concealment is even more complicated in my case because my father happened to be a doctor and because he had an intrusive gaze. To make things worse, I grew up in a monolithic religious community, a religious organization which gathered and used personal information against its membership with a Stalinist zeal.
As a result of all of this, I learned some very effective ways to hold parts of myself out of public view.
What I figured out, growing up, was that seeing into the intimate lives of others gave you information about them, and that this information could give you power over them, which could be used in tremendously harmful ways.
As a result, I have lived my life guarding information about myself very carefully. I am constantly monitoring what other people know and don’t know about me. I can’t shut this part of my mind off, even with the people I trust most deeply in the world. Some part of my mind is always keeping track of what they have on me. I am never not aware of this.
(It’s not lost on me that I have chosen a profession in which I am able to experience the extraordinary range of human passion while simultaneously revealing very little about myself. I suspect that many, if not most, of my colleagues share some version of this trait.)
So, I am writing every word of these posts while containing my anxiety that they will in some way be used against me. In the simplest version, my fears are simply that you’ll think of me as someone who is whiny, helpless, unmasculine, weak, deluded, or attention-seeking.
I have worse fears than that, of course.
But for the moment I’ll keep them to myself.
Why I’m telling you anyway
Given all of this, I’ve wondered over the past weeks just why it is that I have felt compelled to tell this story publically. One answer has been that regardless how I imagine myself being perceived by others, this is the simple truth of my experience. Another answer lies in my awareness that being undiagnosable means more than just the accumulation of symptoms and tests and conditions that I’ve described above. On some level, undiagnosability is the human condition. It’s an existential truth: so many of our questions are eternally unanswerable. Finally, I’ve been writing this because of the simple recognition that my experience is not uncommon. There are many people who are desperately seeking a name for their seemingly unnameable suffering. Telling this story doesn’t give that suffering a name, but it does give it a voice.
But there’s something more. Something deeper.
It’s this. The experience of being undiagnosable has changed me. Writing this story is a sort of coming out for me. I’ve worn myself out over the years doing all the work it takes to keep myself so carefully concealed. Somewhere in all of this experience, something has shifted in my personality. That change took place during the period I will describe in the next post, the period in which I abandoned all hope of ever getting an answer. Giving up freed me, in utterly unexpected ways.
[In part seven of this series I will explore what it means to abandon the hope of finding a diagnosis, and how doing was essential for my well-being.]
We all have questions to which there seem to be no answers. And I’m pretty sure that most of us also harbor some fantasy about a place or person or a set of conditions which will reveal the secrets of those unanswerable questions.
Maybe your unanswerable question concerns a troubled relationship and you fantasize that when your partner finally sees how much you care about them they will finally reveal to you the secrets of their heart.
Or maybe your unanswerable question concerns the meaning of your existence, and you imagine that you’ll receive the ultimate answers when you are finally in the presence of God.
That’s what I was told when, as a child growing up in the Mormon church, I pestered the adults around me for answers to my many questions about the confusing points of Mormon doctrine. The answer, I was told (with gradually increasing annoyance), would be revealed to me in the afterlife.
It would have been comforting to be able to accept this explanation. I tried. I tried to generate a simple faith that “God has a plan.” I tried to ease my anxieties by telling myself that God moves in mysterious ways.
But I couldn’t. so I kept asking questions, even after it was suggested to me that my attempt to try to understand such things in this life was bordering on sin.
This is all to say that for me, when things get hard, I don’t have a spiritual tradition I can turn to for either comfort or answers.I’ts not to say that I’m opposed to spirituality or religion in general. I don’t mind at all when people tell me that they’re praying for me. In fact, I like that. Just don’t ask me to pray for myself.
And I understand that some people would say that this is precisely my problem. I know more than a few people who would argue that disease can be the physical a manifestation of a spiritual malaise.
For me though, at least at this point in my journey, the fantasy of an ultimate answer to my diagnostic questions was grounded firmly in this world. Specifically, in Rochester, Minnesota. At the Mayo Clinic.
Defending your life
You know, when you find yourself scheduling an appointment at Mayo, that you have officially reached the point of taking desperate measures. Certainly nothing makes you feel like more like a patient. Showing up at Mayo’s complex of buildings, woven through downtown Rochester, you feel like you’re stepping into a realm where everything has suddenly become symbolic. It’s like you’ve stepped onto the set of the afterlife in Albert Brooks’ “Defending Your Life.”
What does it mean to be a patient at Mayo? Perhaps it means that you are a such a difficult case that this is the only place that can treat you. Or perhaps it means that you are so special that you can only be treated by the very best doctors in the country.
For me, Mayo symbolized a bleak sort of hope. If not for a cure, at least for an answer to the question of what was going on with me. Bad news or good news, at least they could give me some news.
But it proved not to be so simple. We were able to get a relatively timely appointment with a neurologist because of the concern that I might have ALS. This turned out to be both a blessing and a curse. While it got me seen quickly, it also focused all my appointments so specifically on ALS that it seemed to severely limit the diagnostic question being asked.
Instead of asking what was the cause of my symptoms, they merely asked: is this ALS or not?
A month or so before Mayo, I’d gone off all of my medications. This was an effort to do a little quick and dirty diagnostic testing of my own. My wife had often wondered whether my symptoms might be caused by some combination of the medications I was taking. So I went off all of it – the statin , the anti-depressant, the testosterone cream, the thyroid supplement.
It didn’t seem like it could make things much worse. And it didn’t. I stayed off of everything for several months and aside from resetting my thyroid, testosterone and cholesterol levels to their premedication state, going off of my medications didn’t have any significant effect on how I felt.
At Mayo, when they weighed me at the beginning of the appointment the scale landed at 164 pounds. This was May of 2009. Down from 187 in January. Four or five pounds lighter than I’d thought I was when I left Missoula. This unnerved me. But I was nervous anyway. I was worried about what might be wrong with me of course. But I was also anxious about my ability to make use of what seemed like an exceptionally important appointment.
I was working hard to be a clear presenter of my symptoms. I’d written a narrative account of everything that I could remember, which I gave to the doctor. And I tried to articulate those symptoms verbally as clearly as I could.
Narrative and translation
It matters how you structure the narrative of your illness. Not just in terms of the personal meaning you assign to your experience. Your narrative has a significant effect on how a physician perceives both the weight of each piece of information and the relationship between each element. So do you describe things in chronological order? Or do you describe symptoms in order of importance? What’s your opening sentence? What do you leave in and what do you omit? Or do you try to include everything?
In fact, there’s an even more primal function that your narrative serves. Like any author, you are trying to get your audience hooked into your story. No one wants to acknowledge this, but your doctor is as human as anyone else and the truth is that a compelling story is more likely going to get his or her full attention.
Structuring my story was difficult for me for several reasons. First, I was trying to use my story to expand the diagnostic question. Of course I wanted to rule out ALS. But truth be told I was growing gradually less worried that this was what I had. I wanted to make sure that I left Mayo with more than just a rule-out.
The other problem I faced in constructing my narrative was that I’d reached the point where everything in my experience had started to look like a symptom. I couldn’t distinguish between ordinary, harmless bodily occurrences and potentially important symptoms. I had no reliable filter for my experience. (That little white spot on my foot could be nothing, or it could be the key to the entire puzzle.) And I know that when you reach the point where you’re trying to include every potentially important piece of information in your story, you can start to sound a little crazy.
In the end of course I had to trust the doctor to be a good diagnostic listener. No matter how well told my story was, I had to rely on his ability to translate my phenomenological description of my symptoms into an etiological account of my illness.
He did seem to listen attentively. And his neurological exam was careful and thorough. He observed the spasms rippling through the muscles in my leg, just beneath the surface of my skin. He said that, although he couldn’t account for many of my symptoms, he suspected this wasn’t ALS. The EMG I had scheduled next would be definitive.
I sensed that he was attributing my symptoms to psychological causes. And sure enough he suggested that my weight loss was the result of anxiety. This was maddening, because I knew that the more I protested, the more he would feel confirmed in this diagnosis. Still, I tried. I tried to explain, as I had to other doctors, how familiar I am with my own anxiety and depression, how I have never in my life lost weight like this, even when I’ve been in the throes of much more intense anxiety.
He seemed unmoved. He ordered a set of blood tests, and an MRI of the cervical spine (the only important part of me that hadn’t yet been scanned). He said that because of the erectile dysfunction that he would throw in a few tests of my autonomic nervous system as well.
This was a whole new area for me. I hadn’t even known that there were such things as disorders of the autonomic nervous system. But there they were, with their tongue-twisting names. Postural Orthostatic Hypotension Syndrome. Chronic Inflammatory Demyelinating Polyneuropathy. And of course when I started looking up the symptoms of these disorders, it was frighteningly easy to match them up with my own experience. Especially since I had in fact been experiencing orthostatic hypotension, an unusually intense light-headedness whenever I stood up after having been crouched down.
Benign
As expected, the doctor who performed the EMG gently reassured me that he didn’t see any sign of ALS.
So, I thought, now what? The big news had been delivered on the first day, but I had a series of tests scheduled during the week. Although I knew I shouldn’t, I allowed myself to start worrying about autonomic nervous system disorders. I had my blood drawn and got my scan. I met with the physical medicine doctor, which I discovered too late was premised on the idea that I actually had ALS. She looked at my chart, smiled, and congratulated me. She told I should go out and celebrate, take a vacation to Hawaii. I tried, fruitlessly, to explain that while ruling out a disorder, especially a particularly nasty one like ALS, was great, it still left me with the same conditions I started with.
She handed me some pamphlets on relaxation.
On our last day in Rochester, I had the autonomic nervous system tests. First was a tilt test, which looked at how my blood pressure reacted under different sorts of stress. Normal. Then, finally, the most bizarre test I’ve done yet, in which I was covered with a gold-colored material then placed inside what can only be described as an oven. The technician turned on the heat and over the course of an hour, my body temperature gradually elevated. Every place where I sweated, the gold colored material turned to red. They were looking for spots where I didn’t sweat, which could be a signal of autonomic dysfunction. It turned out there were a few spots on my feet that weren’t sweating. Which sort of made sense to me, since I’d begun feeling numbness in the same places, on the tops of my feet.
What did that mean? Was it a symptom of something larger? Did it have any significance in relation to the rest of my symptoms? Or was it, as the name implied, something small?
I really wasn’t sure and she wasn’t going to say.
Back home, we waited for Mayo’s report. I read more about disorders of the autonomic nervous system, which was frightening and unhelpful. Still, I couldn’t help trying to solve the mystery for myself.
Something was beginning to shift, though. Something about the way I understood my condition. It felt less and less like I might be on the verge of some horrible, sudden death. That was good, but that fear was being replaced by the concept of a slow-motion decline.
Weeks went by. And the longer we waited for the report from Mayo, the more likely it seemed that they hadn’t found anything truly awful. If that were the case, it would be unconscionable to wait this long to tell us.
Nothing came and nothing came. We called. And called again. Finally I faxed a letter to the clinic, using language meant to alert them to the liability associated with medical negligence. They then sent us a single page with the doctor’s initial note. A paragraph. The diagnostic essence of which was summed up in the statement: “The patient does not have ALS.”
Weeks later we finally got the full report, containing the results of all the tests. The diagnostic summary read like this:
Probably benign fasciculation-cramp syndrome
Erectile dysfunction
Hyperlipidemia
Anxiety and possible depression
This was comical. At least that’s what my doctor back home thought when he saw the report.
“Benign fasciculation-cramp syndrome? What’s that? That’s not a diagnosis. They just made that up!”
Well, more or less. It is a description of a set of symptoms, an invented categtory, a convenient way to refer to people who have constant ALS-like muscle spasms, without having ALS. It exists in the sense that there are web sites dedicated to it and on-line forums in which to discuss it. But it’s not an ICD diagnosis.
It’s the word “benign” that really irks me. It means, technically, that the muscle spasms you experience aren’t associated with the death of tissue as they are in ALS. But it doesn’t mean that those fasciculations aren’t associated with a different condition which isn’t benign. In fact, it doesn’t tell you anything at all about the meaning of the symptom. It simply says that you experience this thing and we don’t know how to explain it.
To be fair, the Mayo Clinic clearly sees more than its share of patients with fasciculations who don’t have ALS. They have a right to call it something. But what I object to is the diagnostic failure that this “diagnosis” represents. It was as if I’d told them that I had a sore throat and a runny nose and they came back with a diagnosis that read:
Esophogeal inflammation
Excessive nasal liquid syndrome
The diagnosis they’d given me, in other words, was no diagnosis at all.
The particular pleasure of almost understanding
The gods of western medicine had no answer for me.
So who was I to turn to for answers? How was I supposed to make sense of my symptoms, which continued to evolve and worsen whether they were diagnosable or not?
I began, for the first time in all of this, to contemplate the possibility that there simply might not be an answer for me.
I heard a few stories, along the way, about people who had all these strange and mysterious symptoms, that took over their life and then eventually went away.
I also heard stories about people who went for years without getting a diagnosis.
I hadn’t heard a story yet in which someone was simply, permanently, undiagnosable.
It’s an experience which makes a pretty good psychological test: how does a person hold in mind an unanswerable question? Or more importantly, can a person hold such a question in mind? Or do they revert to strategies like denial, or superstitious beliefs in order to force their view of the world into a semblance of order?
In general, I’m pretty good at staying open to the unanswerable. There are many mysteries in life towards which I am able to remain peacefully agnostic. In fact I actually sort of enjoy the feeling that irresolvable contradictions give me. I like the creative energy that arises in the unsettled space between contradictory ideas. If I have a single, unified belief about life it’s that being human is hard in subtle and ambiguous ways, and that being truly honest with ourselves requires us to hold ourselves openly in a state of unknowing.
But I was having trouble with this one. I was afraid of being undiagnosable. I was afraid on a pretty mundane level. I wanted to be able to tell people what I had. I wanted to be able to give a sensible explanation for what I was going through. I didn’t want to look crazy. And without a diagnosis, that’s exactly how your suffering can start to look.
But I had no choice but to start edging myself toward acceptance of the possibility that there was no name for what I was experiencing. And as I did that, I began to become more open to other ways of understanding what was going on.
Which is not to say that I altogether abandoned western medicine. We ran through a list of potentially relevant specialists I hadn’t seen: an allergist, a rheumatologist, a gastroenterologist, a sleep specialist. I made appointments with one of each. But honestly, I didn’t have much hope for any of these. They seemed like shots in the dark.
Given the experience I was having with western medicine, I did become more open to exploring alternative medical approaches. I’d never been a big fan of naturopaths and alternative medicine people before this. It all just seemed a little flaky and ungrounded. But I had done acupuncture.
In fact, I’d been seeing an acupuncturist long before my symptoms started. My wife had started seeing this woman long before I had, and had encouraged me to try her as well. Eventually I did and I found the acupuncturist to be one of the most gentle, accepting and understanding people I’d ever met. We spent most of our time talking, and no matter what was going on in my life, she conveyed the deep conviction that what was happening to me was exactly what should be happening. Where I was, at that moment, was exactly where I was supposed to be. More than any actual therapist I’ve ever had, she showed me how to take an attitude of acceptance toward my own experience.
After talking for most of the session, she would put me on the table and feel my pulses then poke a few needles into me, or burn little piles of incense on my back. As she did she explained her diagnosis – too much damp heat, say – and she explained how her treatment was designed to address this problem, how addressing my qi at this particular point of this particular meridian was meant to help the imbalance of the energy in my body.
To be perfectly honest, I never noticed much physical effect from any of her treatments. But I keep going to her to this day. Because I love the way I feel about myself when I’m in her presence.
The acupuncturist also prescribed Chinese herbs for me, big brown pills that I was supposed to take on overly-complex schedules. I took them, even though once again I rarely felt much effect. But I appreciated the possibility that they might make a difference.
This is part of the appeal of alternative approaches to medicine. There’s a way in which not understanding how they work enhances our hope that they produce miraculous results. It’s irrational, I know. But it’s also sort of irresistible.
At any rate, the rational, empirical world of western medicine had had its shot at me. I needed to try something different.
So my mind was open when, in the summer of 2009, I found myself wandering through Seattle’s Chinatown. Mostly I liked hanging out there because I’d been trying to teach myself Mandarin. And even though I still knew very little Chinese, even though most people I met spoke Cantonese and most of the characters on the signs were written in a traditional style that I hadn’t studied, it was still thrilling to feel the possibility of understanding.
In fact, I love the sensation of almost-but-not-quite understanding. Being able to recognize two or three characters on a storefront sign made me feel the rich possibility of understanding all of them. Eavesdropping on conversations, I couldn’t have translated more than a few words. But I could hear where each word and phrase began and ended. I could divide that flow of sounds up into units that I knew were interpretable. Sensing the possibility that everything could make sense was thrilling.
I wandered into a pharmacy, looking at the assortment of dried herbs and mushrooms and sea creatures, the shelves of products whose meaning and purpose I couldn’t begin to discern.
At the back of the store there was a man sitting behind a desk. He wore a white lab coat and he was feeling someone’s pulses. A clerk approached me to ask if she could help me. On an impulse, I asked whether the doctor would be available to see me.
Of course, she said. Just wait your turn.
His hands were so strangely shaped. They were like soft claws, with the tip of each finger narrowing to a rounded point. He took my hand and placed a finger on my wrist, feeling my pulses as I described my symptoms as best I could through a translator. Very tired. Lost weight. How could I explain the muscle spasms? I tried my best.
He took his hand off my wrist and started writing, speaking as he did to the translator.
“You’re gonna feel better,” she said to me. “We make you a good prescription.”
She described what I was to do. She would give me bags of herbs. Every night after dinner I was to empty one bag into pan, cover it with cold water, then boil the liquid down for about an hour until there was a cup of liquid left. Drink that.
As she spoke, the staff of the pharmacy started assembling my prescription. They laid out seven paper plates on the counter, onto which they piled pieces of bark and seeds and dried mushrooms and objects I couldn’t recognize at all.
That night I prepared the herbs as I’d been instructed. The smell filled the house, an utterly distinctive, swampy, rotten, but still not entirely unpleasant sort of smell.
I strained the dark brown water through the pile of soaked herbs. My wife grabbed a camera and took pictures as I, in the words of my acupuncturist, gacked it down.
I continued to take the herbs all through that week. I seemed to feel a little bit better, so before leaving Seattle I went back to the pharmacy and the doctor read my pulses again, adjusted his prescription and sent me off with a month’s worth of herb-filled paper bags.
I administered them conscientiously for that entire month. And they really did seem to help. A little bit. But that was more than anything else had. In fact, it was the first time since this had all started that anyone had done anything for me that was designed to make me feel better. I had no idea how the herbs worked, but whatever the reason they were one of the few things through this whole ordeal that has helped at all.
But monthly trips from Missoula to Seattle were impractical. And while the herbs helped, they didn’t give me a diagnosis. They eased things, but they didn’t’ feel like the ultimate solution. The next time I’m in Seattle, I thought, Ill return to that pharmacy. But in the meantime I followed up with the few traditional medical appointments, while continuing to wonder even more about what it would mean for me to go forward without a diagnosis.
Wandering Spirit
Then one day last Fall, a dear friend who knew about what was going on with me approached me with an unusual offer. She had a friend, a Hmong woman, whose mother was a traditional healer. My story had come up and a proposal arose: would I like my friend’s friend to ask her mother whether she might be willing to treat me?
I nearly broke into tears at this offer of help from a complete stranger, this lovely moment of what I can only call grace. I didn’t know much about the Hmong people. I was aware that there was a sizeable Hmong community in Missoula, that they were refugees from the portion of the Vietnam War that had spilled over into Laos. I knew it was a brutal history that involved armed conflict, years of displacement in refugee camps, then a process of resettling halfway around the globe. I’d briefly had one Hmong client, years earlier, a sullen teenager who was the only client I’ve ever had who literally fell asleep during a session. While I was trying to find a way to work with him I’d read The Spirit Catches You and You Fall Down, a powerful book about the struggles that Hmong people in America have in their interactions with the western medical system. Now I was starting to look at that story from the other side. What would it mean for me as a white man to try to open myself to traditional Hmong healing practices?
The healer was a compact, quietly intense woman. She spoke very little English. She worked at an Asian restaurant. When her daughter told her about me, her mother responded that she knew there was someone out there who needed her help, but she hadn’t been able to learn who it was. Now she knew. She was grateful to have found me.
You know mom, her daughter had said, you don’t need to do this. You’ve never treated someone who’s not Hmong before.
But her mother said that I was the person she was meant to help.
It was a powerful thing, to suddenly feel accepted and valued by this person I didn’t know, from a culture I only poorly understood. I started trying to understand more. I read what books I could find, including a beautiful memoir by Kao Kalia Yang called The Latehomecomer, which tells the story of her family’s passage from Laos to Thailand to America. I read a little about the Hmong language, with its seven tones, and tried to teach myself a few phrases.
I spoke to the healer’s daughter, who explained to me some of the Hmong spiritual beliefs. She told me how the Hmong believe people have more than one spirit or soul. And these souls can wander. And wandering spirits can cause physical illness. Sometimes they wander so far off that they can’t find their way back home. Sometimes they leave a person because something has frightened them away, some trauma that makes them afraid to return. The healers work is to call back your wandering spirit, and to help keep the spirits that haven’t wandered from getting lost.
Again, I was almost in tears listening to this. I wasn’t certain how it all might apply to my health, but emotionally it resonated deeply with my experience. A part of me was lost. I needed help getting it back.
The healer worked with her husband, who assisted her and also acted as translator. He asked me to come to their home to meet with them.
With their granddaughter in the room watching SpongeBob on television, we talked. I did the best I could to explain what I was going through. After awhile, the healer handed me three sticks of incense and asked me to blow on each of them. She was very interested in whether I had had any recent, sudden frights. I couldn’t think of anything like that (I had of course often been fearful over the past year and a half, but that fear was anything but sudden). I tried to convey to her a sense of the past trauma that I’ve experienced in my life, the times in which I had been frightened in the ways she was talking about. She went downstairs. Her husband explained that she was doing a ceremony to help her know what I needed. As we waited, we talked. About the family’s history, about his daughters and their husbands, their jobs. About ordinary things.
“You’re going to be okay,” he said to me, more than once. “Don’t worry, you’re going to be fine.”
When she returned, his wife told me that my spirit had wandered and that I needed a healer.
It had been explained to me before that this was a formal procedure through which we would begin this process. I knew that my role at this point was to ask her, formally. if she would be my healer.
She agreed. Her husband then got a roll of string and a pair of scissors. He cut several lengths and he tied them around my wrists, explaining the nature of the knots he was tying. This, I understood, was meant to prevent my remaining spirits from wandering further, to tie them to me.
They explained that because my frights had been a long time ago, my spirit might have wandered very far. It might be a little hard to bring it back.
“But you shouldn’t worry. You’re going to be okay.”
Over the next week, I went to their house several mornings. She cut up some ginger and massaged it into my arm. Then she took my jacket and went into the kitchen. I could hear her chanting as she shook my coat above the heat of the stove. “Shaking out the things that are scaring you,” her husband explained.
After several of these treatments we waited a few weeks to see how I would respond. I didn’t know quite what to expect. I was scared about what was happening to my body and I was hopeful that what she was doing for me might help. But I had no frame of reference with which to make sense of how it might help. All I knew to do was to hold myself open to it. I concentrated on opening my heart to this help as much as I possibly could. I tried to hold myself in a receptive, grateful state of mind.
So it upset me that I didn’t start to feel better. As a patient, I want to report to my healer – whether it’s a Western physician or an Asian shaman – that the treatment is working. I know that it’s irrational to think of myself as a “bad” patient if I don’t respond to someone’s treatment. I also know that in order to be treated well you have to report on your experience as accurately and truthfully as possible.
So when I spoke to the healer’s husband I simply stated the truth. I explained to him that while I was still hopeful, I wasn’t actually feeling any different.
“Don’t worry,” he said. “This thing we do takes time. It’s not like you take a Tylenol and your headache goes away.”
He said that because my spirit had wandered so long ago, it was having a hard time finding its way back. He said that he and his wife wanted to do a ceremony for me, at my house. He told me that for the ceremony I would need to get hold of two young chickens to be sacrificed, one male, one female.
Ceremony
Recently in Missoula it’s become a popular practice to keep chickens, even within the city. We have several friends who are raising chickens, so I started calling around to figure out how I might get hold of a few of my own. As it turned out, it wasn’t that hard to find a male. Roosters don’t lay eggs and because of their noise they’re banned within city limits. I was able to find a colleague who keeps chickens, someone who wasn’t upset by the idea of them being sacrificed in a healing ritual, and who just happened to have two young males that she could sell me. It would be helpful to her, she said, if I could take both of them off her hands.
I bought the second one as well, to give to my healer as a gift.
Finding a female was harder. But eventually I found a young woman just outside town who raised and sold chickens and who wasn’t put off by the reason I needed to buy one from her. The ceremony could proceed.
On the afternoon of the ceremony, my wife was out of town and I was taking care of our two sons on my own. They’d come with me to get the female chicken and I’d explained to them as best I could what was going to happen during the ceremony. They’re going to sacrifice the chickens, I said. But you don’t have to be around for that if you don’t want to.
They opted to keep their distance.
In truth, I knew very little about what was going to happen. I certainly had no idea how one went about sacrificing a chicken. I anticipated that it would involve me in some way. That I would have to say or do things, or at least stand there while things were done to me.
But it didn’t actually involve me, not directly. I needed to be there, of course. But it was done on my behalf. I was not an active participant.
When the healer arrived, her husband quickly oriented himself to our kitchen. He had brought a large pot which he filled with water then put on the stove to boil. He asked me to find a medium-sized stone from our yard. Then he took out a packet of glittery red paper and some scissors and he started cutting a human figurine out from the paper.
“It’s you,” he said brightly. “It represent you.”
It’s difficult to remember the precise order in which everything happened. That’s largely because they went about their spiritual business in such a subtle way. I had been expecting something intimidating, serious rituals during which I could easily do something embarrassingly inappropriate. But it wasn’t like that at all. The spiritual work was woven seamlessly into an ordinary conversation. As the healer crouched in the corner, chanting and repeatedly tossing a pair of water buffalo horns, her husband asked me about my family, talked with me about hunting and cooking and gardening. It was the same sort of conversation I could have been having with anyone in Missoula at that moment.
After making a series of preparations, the healer’s husband asked me if I had something that he could use to dig a hole with. Then he asked me to locate a spot in our yard that wouldn’t ever be disturbed. I picked a far corner where he dug a small hole. As his wife chanted, he lit a match to the paper figurine. Then they placed the stone I’d selected in the hole along with the ashes and quickly covered it with the stone I’d found for him.
Because your spirit has been wandering for so long, they explained, it has given up hope of returning and it has started on the process of reincarnation. The hole was to help guide my spirit back. The figurine took the place of my spirit, so that it could return to me instead of continuing on the path toward reincarnation.
Prognosis
I’m not sentimental about animals. My grandfather was a sheep rancher and as a child we raised steers for beef. I’ve never slaughtered an animal myself, but as a teenager I shot ducks and rabbits and it didn’t upset me.
Sacrificing an animal felt different though. Not in a bad way. Just different. Killing an animal for meat has an explicit logic to it, which, perhaps paradoxically, allows you to keep an emotional distance on the event. To me, it’s like pulling a carrot out of the ground.
But when you sacrifice an animal you have to make yourself so much more aware of what’s happening. It’s so much more…intimate.
And when you sacrifice an animal in your own kitchen there is no coherent way to distance yourself from the experience. You just have to face it.
So while I’m not inclined to romanticize or over-value the experience of animals, I did expect this act to hold a certain weight. I expected a ceremony that was emotionally intense, something which froze the moment.
In fact, just as everything else had, the sacrifice took place calmly and casually, in between conversation about everyday things. The healer and her husband took the female chicken, the smaller one. He held it’s body while she slit its throat over our kitchen’s garbage can. The chicken struggled for a minute or so before dying. The healer finished draining out the blood then took the body and started plucking out the feathers. Her husband then asked me to hold the larger male chicken while he cut its throat. I held it as it struggled then grew still. The blood drained slowly into our garbage can.
They plucked both chickens then placed the bodies in the pot of boiling water. We continued talking together until they agreed that chickens had been in the pot long enough. Talking between themselves in Hmong, they examined the chickens’ bodies for signs. They first looked at the feet, at the particular alignment of the three talons. Then they pulled out the chickens’ tongues. Attached to the hard tongues were pieces of cartilage that tapered off into a thin point.
They studied these objects for a long time.
Then they explained to me that all the signs were good. The purpose of the chickens, I came to understand, was prognostic. They provided information about how the rest of the ceremony had gone. The particular angle of the talons, the particular shape of the cartilage, all pointed to a positive outcome. The ceremony had gone well. My spirit would return.
“Don’t worry,” they told me one more time. “You’re going to feel better.”
A diagnosis
Years earlier, when my father was in a coma in the ICU after suffering a devastating head injury, I’d watched as several elders from the Mormon church sat by his bedside and said a special prayer for him. They took out a small jar of oil, said an anointing prayer over it, then rubbed it into my father’s unfeeling scalp. I’d had nothing to do with the Mormon church for years and I had absolutely no personal belief that this ritual would have any effect. Still, I was grateful for it. I could feel what it meant to everyone else in the room, the hope that it represented.
From an early age I understood that while the religious culture I came from pretends to be guided by a rational system, it is in fact infused with mystery and superstitious beliefs. When that system had control over my life, I resisted it by insistently asking unanswerable questions. Now that I am out from under its sway, I can appreciate the power that those beliefs have to bring people together, to comfort them and even to help them heal. From the outside, I no longer have to struggle against it. And this allows me to open myself to mystery in other ways. Just as I can accept the prayers of Christian friends and family, I can also accept a healing ceremony from a Hmong shaman.
I’m certain that I haven’t done justice in my description of this ceremony. I’ve been an outsider participating in a culturally foreign practice. I can only describe my experience of the encounter and express my great gratitude for it.
In the end, whether this woman was going to cure me or not (and I understand that the jury may be out on this question for a long, long time), she gave me something that no one else up to this point had been able to give me: a diagnosis.
You are sick because your spirit has wandered.
And she knew how to treat me: she called my spirit back.
It was not a diagnosis that I would have anticipated. But it felt deeply right.
I may not be feeling any better. But I’d received an extraordinary gift.
[In part six of this series I will pause to review the story so far and to take stock.]
In my mind I kept going back to cancer. As a survivor of that disease, I’ve always held a certain fear that it would recur. I asked my primary doctor for a referral to an oncologist, which he gave me. While we were waiting for that appointment, I had a regular follow-up appointment with my endocrinologist. I described the muscle spasms, the weakness, the weight loss. I told him about our appointment with the oncologist.
There’s no harm in doing that, he said. But it sounds to me like you ought to see a neurologist.
A neurologist?
Really?
That came as a genuine surprise to me. I thought of neurologists as people who do brain surgery. Which is to say I hadn’t given them much thought at all. I had certainly never taken the trouble to think through the fact that disorders of the nerves that run through our bodies are the specialty of neurologists. It had certainly never occurred to me that nerves are the mechanism which trigger muscle movement. When I experienced a muscle spasm, that was a neuromuscular event.
The thought of needing a neurologist alarmed me more than anything else had thus far. While I didn’t like to be going to an oncologist, at least that was familiar territory. Neurology was something else altogether, a land of unfamiliar and truly frightening possibilities.
I began reading about the possible causes of muscle twitches and spasms. They ranged from benign to awful. I learned the word fasciculation. I learned that muscle fasciculations were an early sign of ALS. I didn’t know much about ALS. Not yet. But it sounded awful.
I certainly didn’t think I had that.
The oncologist considered my history, did a brief physical exam and said that although he had no explanation for my weight loss, it seemed unlikely to him that the cause of my problems was a recurrence of the cancer. What about Multiple Myeloma, I asked? I’d been reading about this form of cancer, how it could strike people who had been previously treated for and recovered from cancer.
I started tracking down the research on the long-term sequelae of testicular cancer and learned the rate of recurrence was significant, years and even decades after the original treatment. And of course it was the treatment itself which could be the cause…radiation kills cancer cells but it also causes cancer.
There’s a word for that: iatrogenic. It’s a complex and, to me, an oddly beautiful concept. It speaks to the hard truth that the art of healing creates opportunities for the development of new illness.
It can happen in many ways. Gathering patients together in hospitals and clinics concentrates communicable diseases in one place and gives them the chance to spread. The invasive nature of many medical procedures also creates opportunities for infections. And, as with cancer treatment, there are times when the only thing that can heal us is something that simultaneously does us harm.
It’s a term that mental health professionals rarely use…although it probably should be a part of our vocabulary. The reason we don’t use it is in large part due to the nature of the diagnostic system for mental disorders. Unlike medical diagnosis, the DSM is agnostic as to the causes of mental disorders. It seeks only to identify them, not (with a few small exceptions) to identify what led to them.
Although this makes for a clearer diagnostic manual, it belies a deeper human truth. Because whether a diagnosis is medical or psychological, one of the first things anyone asks upon receiving it is: why?
In my case, I was looking at causes precisely because I didn’t have a diagnosis. I was starting from the most logical cause I could locate in my history. Which was cancer.
It was a decent theory, which was only strengthened when I read an account of another testicular cancer survivor who later developed Multiple Myeloma. His first symptom? Muscle weakness.
I asked the oncologist if I could have it.
Not likely, he said. If so it would have shown up on your blood tests. Nevertheless, he said, with your history and your symptoms it’s worth doing some scans.
So I had chest and abdominal CAT scans, which came back showing no major abnormalities. Although, he said, there were a few small spots here and there. A lot of people have those, he added. Usually they’re benign.
Still, he said, it’s probably worth following-up with another scan in a year, just to be sure.
Imagining the worst
So was cancer ruled-out?
It wasn’t clear. Cancer wasn’t the likely cause of my problems, but there was certainly room to worry. If I chose to.
To put this another way: is a diagnosis – or a diagnostic rule-out – valid if the patient doesn’t believe it?
Does diagnostic certainty require consensus?
In many cases, particularly in cases of a clear affirmative diagnosis, the answer is obviously no. A malignant tumor in the brain means brain cancer, even if the patient happens to be in denial about it.
But it’s a different situation when it comes to rule-outs. If you test negative for cancer (or for MS, or Lyme Disease or Celiac), but you’re still experiencing the symptoms of that condition…if you don’t fully trust the results of the tests…if you still don’t have an adequate explanation for why you feel the way you do…then in certain ways nothing is ever ruled out.
After all, you can’t disprove a negative.
With each new test suggesting that I didn’t have this or that disease, the thought began growing in the back of my mind. What if I just happen to be hyper-sensitive to the early signs of whatever condition this is? What if it hasn’t grown strong enough yet to show up on the tests? Do I just have to wait until things get worse before I can get diagnosed and treated? Isn’t the value of early detection supposed to drive effective treatment?
These questions were only going to grow more pointed and more maddening.
The first available appointment with a neurologist was months out in the future. While waiting, I tried to diagnose myself using the information I could obtain over the Internet. I learned a lot, in an unstructured sort of way which left me wide open to bouts of pure panic. About ALS in particular. Because any search of my primary symptoms – muscle weakness, fasciculations, weight loss – always led me straight to ALS. The more I let myself recognize that this was possible, the more aggravating it became that I couldn’t get a timely appointment with a specialist who was qualified to diagnose it.
“We’re not a critical care facility,” the receptionist at the neurologist’s office icily informed me when I called to push for an earlier opening.
It was disturbing to realize what a powerful role the simple task of scheduling an appointment could play in the diagnostic process. “Early detection” may be the stated goal of healthcare professionals, but because detection can’t happen without examination, it hinges in a concrete way on the mechanics of scheduling.
We learned that a new neurologist was moving to our town and my wife managed to get me an appointment with her on her first morning of work here. Arriving in her office felt like an epic accomplishment. Here was a person, I let myself hope, who could finally tell me what was wrong with me.
She listened to my story and did a full neurological exam. She couldn’t see anything abnormal on the exam, but she ordered a new batch of blood tests and MRIs of my brain and spine. She scheduled me for an EMG and a nerve conduction test the next week.
At first I didn’t fully comprehend what was at stake with this particular test, in which needles would be inserted into my muscles and the electrical activity of those muscles is measured. In ALS the motor neurons (which direct voluntary movement of muscles) degenerate and die. If you’ve got ALS, you’ll have abnormal results on an EMG.
This test, I gradually let myself realize, might tell me that I was about to begin a rapid descent into paralysis and death.
In addition to the obvious emotional stress, that EMG was one of the most physically painful procedures I’ve had to endure. The sensation of that thick needle penetrating muscles was excruciating. But once it was over, the neurologist looked at us calmly and said she didn’t see any sign of ALS. She said that the MRIs hadn’t shown any sign of MS. She said that I didn’t have Parkinson’s. She said that my blood tests came back negative for Celiac, Lyme, AIDS and a bunch of other things that might potentially cause my symptoms.
I’m not sure what to tell you, she said. But those are things that in my opinion you definitely don’t have.
It should have been a relief. I tried hard to make myself feel that. I don’t have ALS, I repeated to myself. I don’t have ALS. I tried to make it sound true. But because her answer was entirely in the realm of the negative – things I didn’t have – and because the same symptoms that I’d been experiencing were steadily growing worse, I found that I couldn’t convert this absence of diagnosis into feeling of comfort.
I discovered that as long as I was still experiencing the same symptoms, I didn’t feel any relief. There was no way that someone telling me I was fine was going to feel like a resolution. The only relief that I could imagine would have been a clear explanation of my symptoms, a definitive diagnosis.
But I remained undiagnosable.
The neurologist seemed confident and competent. But when you’re as unsettled as I was, you can figure out ways to doubt anyone.
Just how certain was she about the test results?
We asked her.
This is the way it looks to me, she said. But if you want to feel more confidence about this, you should definitely get a second opinion. I would completely understand if you chose to do that.
You could even go to the Mayo Clinic, she said, if that you would set your minds to rest.
[Part five of this series will range from the most traditional Western medical approaches to diagnosis and treatment, exemplified by the Mayo Clinic, with some of extremely non-Western approaches which I also embraced.]
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.
