“Misdiagnosed” – A Manuscript Review

Through the connection of a chronic illness while single, I had the opportunity to read Nika Beamon‘s manuscript of her forthcoming book “Misdiagnosed: The Search for Dr. House.” In this book, Nika chronicles her odyssey with the symptoms of a slew of diseases, which all turn out, in the end, be caused by one rare autoimmune disease, not the medical encyclopedic diagnosis most of her physicians had created. She describes her often scary and life-threatening experiences that landed her in various emergency rooms in the New York City area. She also recounts a slew of testing procedures she had to endure that often created more problems than they actually resolved – in addition to all the side effects from taking medications that weren’t treating the disease she actually had. Her story is raising a lot of questions about the medical profession, especially the variety in the US, where doctors aren’t willing to admit that they don’t know something and continue looking. Instead they throw yet another diagnosis, which all proved wrong, except, of course, the last one.

Part love-story, part journal of her medical odyssey, “Misdiagnosed” reads like a mystery story – attempting to figure out what is going on with Nika’s body. It is a humbling, uncomfortable, and sometimes confusing read. It is humbling to have a chronic illness that was easily diagnosed and almost always treated successfully when I compare my life to what Nika had to go through! She is incredibly tenacious both in her unwillingness to give in to the disease and in her search for a full diagnosis, which swings into full force only after her grandmother died. Discomfort comes from the often vivid descriptions of Nika’s symptoms – from throwing up blood to fainting – and invasive medical tests. At some point, I started to skip the details because I had enough (although, again, that was humbling: Nika had to go through all this!). Some of the side stories, such as her parents’ own illnesses, also seemed unnecessary as they didn’t add anything to the unraveling of the mystery.

Confusing to me was her claim to be single… Through most of her odyssey, she was accompanied by a boyfriend, Marc. Sure their relationship fell apart just when Nika thought it was time to marry (after 10 or so years) and it was strained by her illness and his infidelity. And yet, Marc went with her to a lot of medical procedures and emergency room visits. He was there to take care of her. After he left, she recounts one visit that a friend of hers helped her with. Then she’s back in a relationship with a man who takes care of her – and sleeps with her. Not what I would call “single.” Although maybe this just calls into question the whole idea of single vs. coupled. Maybe it’s time to abandon those labels!

The book also raises other questions that Nika doesn’t address in detail. In addition to her boyfriends, her parents also took care of her. What if she had been thousands of miles away from her parents like so many of us? Though the most disturbing question that kept going through my head, which Nika picks up a bit in her last chapter: What if she didn’t have insurance? In a country where people remain untreated, go into bankruptcy if they do get treated, and sometimes die because they can’t get the treatment they need, it is almost a luxury to have a chronic illness and have insurance.

In a lot of ways, Nika’s book could serve as a wake up call: In a society with an increasing number of people living by themselves, it is crucial that we start creating social systems that reflect that demographic trend. For starters, we need an actual health care system where people care about health – and not leave patients in the dark and cold, as Nika often ended up, literally. Single payer would be a huge step in the direction of caring. Then, we need to start asking the questions Eric Klinenberg suggests and to start implementing his proposals. Instead of pretending that we can go back to the “good old days” of the traditional family (the days that were neither good nor traditional), addressing the implications of recent demographic trends would make it so much less scary to be single and have a chronic illness!

While Nika’s book is sometimes hard to read, it raises so many important questions about the US medical system that I very much hope everyone will get an opportunity to read it, that is, the manuscript will soon be turned into a book. When it comes out, I can highly recommend reading it (even if you’re squeamish… you can always skip some sections…).

Can we really change?

I had a humbling experience a couple of weeks ago. Well, at the time it wasn’t humbling. It was infuriating. As I started to look at what happened, though, it became humbling: I had fallen into “old patterns” again. The buttons that I have become aware of over the last few years had been pushed (I wrote a bit more about it here and here). I thought I had been working so hard to learn not to fall into those wounds anymore, to diffuse those buttons. It was humbling to realize how little I had really changed. Although I am trying to tell myself that things that happened later showed that I have changed, I can’t shake the idea that maybe the deep changes that we’re promised aren’t really possible.

And maybe that is because there’s another theme running in here: Our worthiness cannot be affirmed by ourselves alone (worthy of love and belonging, worthy of getting our needs met). When we live in a world that continuously suggests that we’re unworthy because we fail to meet certain standards, it is hard to hold on to our sense of worthiness. In a society that doesn’t even offer a decent safety net, where people declare bankruptcy or die because they don’t have access to health care, the message that we are worthy of getting our needs met is difficult to believe.

A lot of us are trying so hard to change ourselves – and then we have experiences like I did a couple of weeks ago where all the work we’ve been doing, all the time, energy, and money we spent on changing our habits, seem to evaporate in less than a milisecond. It’s like trying to get the water out of a boat with a small leak: Sometimes we might make some headway – in the end, though, we’ll need to get a new boat.

Maybe this is also one reason why I have been writing less here… It’s so much easier to talk about individual changes that we can work toward than to figure out how to collectively live differently.

Just to be clear: I am going to continue with the practices, including mindfulness meditation and other awareness practices, that help me change some parts of myself. However, this experience has reminded me that I will continue to fall into those wounds. Maybe I’ll get out faster or don’t fall in quite as deep. Real change, though, will require living in a different world.

Dirty Feet

As I watch you sleep
I wonder
what is your story?
How did you end up
sleeping on two seats
in a train
with your bare and
dirty feet
hanging out?
You must be very tired
being able to sleep
like this.
Where are your shoes?
Where is your blanket?
Where is our care?
Nobody reaches out
to give you shoes
to cover you with warmth.
We might look at you
with sad eyes,
as I did,
wondering what your story is. Then
leaving the train,
leaving thoughts about you behind,
going on with the hustle of our lives
as if that is
the most important thing
in the world.

Healing Collective

I was going to write a post about my insights from a talk that Tara Brach gave about Healing Self-Doubt. The talk has helped me realize just how pervasive self-doubt is in my life. What I understood this morning, though, was that at least some of what Tara is describing (our sense of a separate self in particular) might be more a reflection of modernity with its hyperindividualism than of the human condition. It seems like I’ve written on that before, though, without making a dent. My thoughts shifted to Daniel Quinn’s tribal ideas and somehow all of that landed me with an idea that I’ve had for quite some time: A healing house collective. I want to write about that, as scary as that is for me.

Quinn suggests that our way to collective survival requires us to move beyond civilization (also the title of one of his books) by creating a culture based on tribes. This tribal culture cannot be simply a return to the old ways, partly because most of us don’t know how to live that way and partly because we have learned a few things through the experiment of civilization, which we might want to incorporate. So, he calls on us to start forming tribes. Exactly how those would look like, he doesn’t say – can’t say, really – though he provides us with the example of the circus and his own small work group. Both examples point toward the central components: Tribes live and work together; as with a puzzle, every person’s contribution to the whole is necessary for the whole to function properly. This would probably counteract our sense of separation…

My vision of a healing collective seems to capture some of these ideas. The healing collective brings together people to heal themselves and others by living and working together. It also regenerates the soil through a permaculture-based food forest. The collective is made up of healers, people who can run a business, and gardeners. The collective works together by coordinating approaches to healing, which might include dance (to reintegrate the body) and learning skills.

With that typed, take a listen to this video… I am experimenting with new ways of expressing myself, so have started to play around with videos. In the first version, I sketch my vision a bit more formally. This second version tries to tell more of a story. And of course I forgot some things – like that the healing collective tends to be filled with laughter, dance, play, and touch. So I’ll probably update the video at some point… However, I am eager to hear reactions! So take a look/listen:

Second version of my healing collective vision

I realize that this “vision” I am articulating is still very sketchy, more like the draft of a draft… However, maybe there’s enough there for you to get inspired to join me in making this a reality? If so, please let me know! And, of course, you can also contribute to this process by asking questions or making comments! I am sure this will be helpful in fleshing out this picture of a healing collective – and maybe that’ll help me produce a more compelling vision.

A partial list of people/skills needed for this collective:

  • Healers of all forms: Physical therapists, massage folks, counselors, empaths
  • Business folks: Strategists, finance folks (accountants and financiers), marketers
  • Dance teachers
  • Musicians so that we can dance!
  • Carpenters and people who can repair things
  • Gardeners
  • Group workers: Facilitators, mediators, group process guides who help us resolve conflicts
  • Diversity monitors: People who ensure that all the diverse voices are heard and included
  • Artists who transform the space and help integrate left & right brains

Belief Burn

As I am building my empowerment coaching business, I often feel overwhelmed, lonely, and scared. I try to reach out to others – only to be met with resistance, possibly because others are just as scared and don’t feel comfortable admitting it. I am starting to learn that there are certain beliefs that trigger my fear and undermine my confidence. I find it helpful to write down the thoughts. Often bringing them out into the open like that is enough for me to be able to let them go.

So, here’s what I came up with (click on the thumbnail to see the full picture):

fear triggers confidence underminers

Yes, “You are not good enough!” is on both lists…

Today, that didn’t seem to be enough, though. I realized that I can do something similar to my worry burn: It was time to burn these beliefs. I wrote each one on individual pieces of paper:

And then burned them, saying the words (with the most potent belief as the example): “The belief ‘You are not good enough!’ is undermining my confidence / triggering my fear. It has got to go. Fire burn it!” As I dropped it into the water, I would say “Water dissolve it!”

Once they were all burned, I flushed them down the toilet!

Of course, I know that this doesn’t really destroy my beliefs. Sweat glands produce sweat; minds produce thoughts. This is a ritual reminder, though, that I can let go of them. I don’t have to believe everything I think!

What to do?!?

I’ve started reading SHAM, a book by Steve Salerno about the self-help and actualization movement. Even though I knew it would likely exasperate the crisis that’s been brewing in me, I also knew that I have to read it. I haven’t even made it through the introduction yet and it’s clear to me that this book articulates the things I haven’t wanted to hear nor wanted to admit – and still knew somewhere. Essentially, the self-help and actualization movement is attempting to solve systemic problems through individual solutions – with the “nice” side-effect that the problems aren’t resolved, which turns them into cashcows for the gurus, healers, life coaches etc of the sham. It’s a billion dollar industry and, just like the “alternative medicine” world, claims to be alternative when in reality they operate pretty much on the standard model: Make something normal into a disease and charge (lots of) money to fix it.

Take for example self-worth, the holy grail of self-help. Personally, I have spent countless hours and dollars on growing my sense of self-worth – only to keep falling back into the hole of self-doubt. I have wondered about it here lots of times. It wasn’t until I read Eva Illouz that I started to understand why I kept doubting my self-worth: I live in a society that mirrors that I am worthless – at least now that I no longer follow the rules of the married, contributing adult member of society. I am not worthy to receive free health care. I am not worthy to receive a basic income guarantee. Only people who are destroying the planet and ripping us all off seem worthy of such support. In other words, or the words of sociology, there is no social mirroring of my worth and as long as that is not there, my sense of self-worth will remain shaky.

To give a simpler example for this: Today, in a dance class, I kept berating myself for not dancing well enough, noticing that I was judging myself, and talking back at the judgments. It helped some but essentially I kept going in circles. Then the teacher asked us to briefly dance with other people, maybe 3-5 during a song, and smile at each other. Those smiles evaporated my self-judgments! After that exercise, I was able to concentrate on the class rather than my inner conflict. The smiles had done what I wasn’t able to do for myself: They affirmed that I was okay, that I belonged in the class even when I didn’t do things perfectly.

Or take all those courses offered to wanna be social change agents. They promise us to make money while we change the world – not admitting that money is part of the problem! And if we want community, maybe all of us competing with each other to get some of that shrinking pie might not be that great of an idea either. (As I pointed out before, the people who are making money are the people who are telling others how to make money doing “what we love”… In other words, they’re not the change agents!)

And typing of money: I still remember the despair I felt when someone had asked me for empathy because she had trouble making a living as a writer (following her bliss doing what she loved…). She doesn’t need empathy! She needs a basic income guarantee!

As a last example, the central idea of SHAM is problematic. As Charles Eisenstein pointed out in Money & Life, we’re turning more and more relationships into services. Instead of a friend listening to my worries, I pay a counselor. It’s like a mother charging her infant for breast-milk!

All of this, then, has sharpened a dilemma I identified this week. Again, we cannot solve systemic problems with individual solutions. I have no clue, though, how to solve or even start solving the systemic problems we’re facing! They seem hugely overwhelming. And I have to pay rent, buy food and sickness profiteering insurance. That money issue again.

I could turn my ideas into an empowerment coaching business. I’ve started to do this. Becoming a part of sham, of course, does not sit well with integrity. First, I know we need systemic changes. And second, I know that the individual level solutions I offer don’t solve the problems. They’re at best band-aids – or, as I fear, pacify us enough so that we continue to ignore the systemic nature of our problems.

So, the two horns of the dilemma are survival and integrity – or maybe physical and ethical survival. I don’t know (yet?) how to get out of the dilemma. I hope that seeing it this clearly will, however, help me somehow. Maybe it’s time to hire a coach. Oh, wait… Actually, maybe it’s time to pursue more hands-on things. After all dance has healed me more than all that self-help stuff…