The Orangutan Yoga Cult

This blog is intended to be a community where people who have experienced Lyme can share stories, thoughts or reflections from their battle with Lyme.  There are numerous resources on the web where you ask for treatment advice, but I couldn't find any dedicated to being a place where people can share their experiences and allow their friends and family to gain a better understanding of what they're going through.  

If you would like to submit something - be it a few short thoughts or a story, please email LymeDebacles@gmail.com.
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I've always been a little on the trusting side, but I never imagined I'd join a cult.

Initially, I thought I'd been smoothly transitioning into post-college life in Chicago.  My new job seemed like a good fit.  While I wasn't making too many friends yet, I was excited to be attending events where I could meet new people.    

A couple months into this new phase of my life, I started having occasional bouts of insomnia.  I chalked it up to the the underlying stress of major life changes. At first it didn't bother me.  I'd spend my time reading in the middle of the night - appreciating the quieter sounds of the city.  Being bleary eyed at work was annoying, but I'd assumed it wouldn't last.  I'd had this happen a couple times in college, and it always went away within a week or two.

Over the next month, the insomnia got worse.  I was averaging less than four hours a night and occasionally not sleeping at all.  Since middle school, I had always felt like there was a constant pressure on my sternum. That pressure erupted into heart palpitations for days at a time.  Pain migrated up my shoulders to my neck and into my jaw.  My neck was so stiff that I felt the need to crack it constantly.   

I knew nothing about Yoga except that it was good for relaxation and was supposed make you feel balanced.  Beyond that, the only familiarity I'd had with Yoga was what I'd gleaned by playing as Dhalsim in Street Fighter II - notably that it's a martial art that allowed your limbs to stretch out when you attack and that by eating curry you could breathe fire.

We were on the phone for at least 10 minutes.  I explained all the problems I was having and admitted that the insomnia made me fear that I was going to lose my job.  She seemed genuinely concerned and said that the energy of a new city can be overwhelming to sensitive people.  Julie thought Yoga could help and offered me a free private one hour session the next day.

Little did I know that the extra bit of stress from life changes had diverted enough resources for Lyme and its coonfections to engage in a full assault.   

No longer was I able to appreciate the relative peace and quiet in the middle of the night and enjoy a book.  I was freaking out.

It never occurred to that this was the work of an illness.  I thought the palpatations meant that I was having panic attacks, and that made me feel even more anxious.  At the time, I didn't realize that panic attacks didn't last for days at a time.

How long could I keep going to work like this?  It must've looked like I was out partying all night.  Concentrating or being social in the office was nearly impossible.  No one said anything, but I was convinced that any day now, one of the partners would pull me into their office to give me the axe. 

My assumption was that I was so obsessed with getting the insomnia under control, that the anxiety was triggering the other symptoms.  Constantly worrying about sleep had to be making everything worse.  I believed I'd put myself in an endless cycle that wouldn't get better until I started sleeping well again.  

It was imperative to find a way to calm my body at night.

There was a Yoga studio less than a half mile from my apartment.  I called, anticipating a short conversation where we'd discuss rates and I'd see if I could take a free class or two.

Julie answered my call and immideatly put me at ease.  Her voice had a soothing, disarming quality to it.  It was the relaxing sound I'd expected from a centered Yogi instructor.

The following evening, I followed Julie to her office, a small room with a thick lavender scent and a fluffy mat.  She explained that my body was overwhelmed from. all the new energy It was receiving.  Julie had me lie down on my back on the mat.  Making a fist, she gently pounded on the center of my chest.  Instantly, I felt a powerful, tingling that overrode the palpitations.  She continued the tapping, moving all around my solar plexus.  The sensation spread down my hands and into my feet.  It felt like all the stress was draining from my body.

Julie explained that she was a healer and the massage had helped transfer stuck energy out of my body.   Feeling better than I had in weeks, I signed up for a three month membership.  The price seemed a little steep at $340, but it was hard to argue with the cost if Yoga was going to keep me employed.  Julie warned me that the upcoming practices would detoxify my body and it wasn't uncommon for bruises to show up.

Before I left, Julie recommended an exercise to help the chest discomfort.  She hunched her back and leaned forward.  Letting one arm hang limp, she made a fist and pounded her chest with the other arm.  Bending forward with an arm dangling close to the ground made her look like an orangutan.

I slept great the night after that private session.  That morning, my chest pressure didn't feel nearly as overwhelming.  It was nice to have found a solution so quickly.

I attended Yoga classes three days a week.  I found them boring as we tended to just sit or lie down on the floor and listen to new-age music or run our hands along our head feeling the heat from our brain.  Still, I didn't mind being bored for 45 minute stretches if it was going to help me feel better.  The only thing I didn't like about the classes is that they started off with a series of stretches, bouncing in and out of the end range the stretch, which I'd been told multiple different places was really bad for you.

Despite attending classes three days a week and diligently doing The Orangutan exercise every night, my sleep and pain did not improve.  On a day when I hadn't slept at all, I mentioned to Julie before class that I was still struggling.  She recommended another private session later that night.

In a new city apart from family and friends, I was lucky to have someone looking out for me.

Julie had me lie down on her mat.  Hoping for another massage, I was disappointed when she brought out a device that looked like an old CD Discman with opaque grey glasses that contained tiny colored LED lights on the inside.   She explained that this device would induce delta brain waves that would help put me to sleep.  I put it on, closed my eyes and rested into the mat.  I remember a little buzzing and some lights flashing and then I fell asleep.

Gently, Julie shook me awake - and despite only getting a 10 minute cat-nap, I felt re-energized.  $400 for one of those brain wave devices was a lot of money, but it was going to cure me.

I got into bed an hour early that night, excited to induce delta waves.  When I turned on the brainwave device, I was treated to flashing lights and the pulsing sound of a hoard of angry bees. 

How was anyone supposed to sleep with all that noise, let alone the light show?

If I hadn't been so overtired that I'd fallen asleep on the mat, would I have realized that no device this cheaply made should be able to influence my brainwaves?  If I'd turned in this piece of garbage for a final project in one of my college digital design classes and claimed it helped influence sleep, I wouldn't have received a passing grade.

Why not just play ocean sounds or that crappy new-age music from class?  At least that may have been boring enough to help me sleep.

In a rare moment of clarity among the overwhelming stress, I realized that this Yoga organization was most likely a cult.  

The device slipped from my fingers and crashed dropped on the bedroom floor.  While it didn't shatter when it hit the hardwood, (in fact it still worked afterwards) I stared at it for a few seconds, reminded of "Kobayashi Porcelain" cup.

Julie and the other instructors kept asking me if I wanted to go to weekend seminars that cost hundreds of dollars.  As you became more advanced, the price of the seminars went up.  The founder of their national group was spoken of with great reverence - always emphasizing how much "energy" he had - almost like he was some kind of deity.

They wanted all of my money and time and probably happen that I could eventually recruit new members.

Had I been just another desperate person swept up in their schemes?  Was all Yoga a cult?  

I went to one more class and decided that it was better to let my membership expire and be grateful that I'd caught on before they emptied my bank account.  I thanked Julie for her help and told her I wasn't coming back.  

There was an extra bite to her usually soothing voice.  "You know, I had depression problems before I joined and they've gone away.  It's up to you if you want to get better."

                                                  *                               *                                *

It took a little more than a year, but the initial insomnia eventually disappeared.  I learned to mostly deal with my neck, jaw, shoulder and chest discomfort.  While I didn't feel myself, I managed at work.  I slowly made friends and was lucky enough to find the wonderful partner who became my wife.  In the meantime, I saw all kinds of specialists for the discomfort, but enough professionals had said that it was stress/anxiety/depression from the transition to adulthood that I believed that was the source of my problems. 

Six years after the symptoms began, Lyme and its co-infections fortified their position.  Sleep became an issue again and the pain spread to my lower back into my legs and ankles.  

Freaking out, I thought I needed to find a therapist to figure out what was wrong in my head. 

During my first session with Ann, I felt an immediate connection.  Whenever I spoke, she had a kindly smile and her eyes showed genuine concern.  I didn't know if she'd be able to help, but I felt comfortable around her.  At the end of our first session, she mentioned that she practiced Yoga and used that to help clients relax.  Ann asked if I'd be open to it.

At this point, I'd done enough real Yoga to know that the cult-like organization I'd joined had about as much to do with Yoga as Dhalsim did.  Real Yoga was relaxing and temporarily helped my pain.  I was all for a therapist who incorporated it.   

At the end of my second session, Ann suggested we try a Yoga technique to help relieve my chest.  She got up, hunched over and began beating her chest with one arm hanging limp.  

My heart raced and I felt small beads of sweat forming on my brow.  There was no question about it, she was doing The Orangutan!

Did that mean... no, it couldn't be.  Maybe it was a legitimate Yoga pose that the cult-like organization had borrowed.

As I mimicked Ann's Orangutan, I asked her what school of Yoga she practiced.

She named the "Yoga" group that has been after my bank account and mentioned that she'd be at a seminar all weekend.  Ann thought I should consider those seminars as they might be helpful.

I called Ann later that day and left a message explaining that I'd had a bad experience with her "Yoga" organization and I wanted to talk about it before scheduling another appointment.  I'd appreciated her wisdom until she did The Orangutan.  Maybe it was possible to still benefit from her treatment.

When a week passed and Ann didn't call back, I left her another message telling her that I wanted to stop our sessions.

I never heard from Ann again and she never billed my insurance for our sessions.

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Some additional notes:
I'm pretty sure that awesome "energy" massage of Julie's was a Shiatsu massage.

I don't want to reveal the actual name of "Yoga" organization I joined, because they have a tendency to be litigious if you call them a cult... so, let's just call them "Not A Cult" Yoga.

Oh - and here are some completely unrelated links that I'm including for some light reading:

http://www.forbes.com/forbes/2009/0803/fraud-dahn-yoga-centers-body-brain-and-wallet.html

http://www.rollingstone.com/culture/news/the-yoga-cult-20100328

http://www.cnn.com/2010/CRIME/01/05/yoga.lawsuit.lee/

http://www.dailynews.com/20090623/former-employees-suing-dahn-yoga-and-health-centers

My Lyme Crutch

This blog is intended to be a community where people who have experienced Lyme can share stories, thoughts or reflections from their battle with Lyme.  There are numerous resources on the web where you ask for treatment advice, but I couldn't find any dedicated to being a place where people can share their experiences and allow their friends and family to gain a better understanding of what they're going through.  

If you would like to submit something - be it a few short thoughts or a story, please email LymeDebacles@gmail.com.
______________________
"Don't you see the line?" demanded a man I didn't realize was standing behind me.

Overwhelmed with the anxiety of my upcoming job interview in Times Square combined with my lack of familiarity navigating an airport, I'd accidentally cut into the middle of the cab line at LaGuardia.

"Oh - I'm so sorry," I exclaimed, stepping aside.  I have no doubts that between my inability to properly enter a simple taxi stand queue, the bizarre combination of my ratty winter coat over a suit and my startled response, I couldn't have done a better impression of a deer staring into oncoming headlights.

"It's okay.  You don't do this very often?"  After I shook my head, he pointed to the median across the street and continued, "You know the best place to wait is over there.  Cabs stop by there all the time."

It took about five minutes of waiting in that grassy median before it occurred to me that the guy was preying on my naivety and I walked back over to the cab line.

As I replayed that incident the other day, my first thought was that my Lyme symptoms must've been really bad for me for fall for something like that.

Wait - how could I blame Lyme?  That incident took place during my last year of grad school.  I was experiencing the same minor Lyme symptoms I'd had since middle school, but it would would be another six months before the unholy mix of Lyme and its co-infections would overwhelm my immune system and severely impact my quality of life.

I realized that since becoming ill, I've blamed my symptoms every time I've inadvertently said or did something idiotic or socially awkward.

About 10 years ago, an elderly relative with Alzheimer's remarked that she had to "Remember to take her memory pills."  She thought about her statement for a few seconds and then laughed hysterically at the irony.  When I repeated the comment to her a few moments later, she didn't remember making it and she had the exerienced the same belly laugh all over again.  Appreciating the warmth of her laugh and since laughter was supposed to always be good for you, I repeated the comment a dozen or so times.  It wasn't until later that night when I replayed the scene that I realized how annoyed a couple other relatives appeared - they felt that I was making fun of her.  I told myself that if I wasn't feeling so crappy - and my Lyme symptoms pretty bad that day - I would've read the room properly and known to stop after the second or third iteration.

Looking back on it, I'm not so sure.  I had a self-absorption streak in me leftover from adolescence that got me into awkward situations long before Lyme was an issue.  Believing the jerk at LaGuardia was one of many examples of times when I did an outstanding job misreading a situation.

There are times when I have no doubt that Lyme makes me more oblivious, short tempered and far more self-involved than I'd like to be.  I've been to funerals where It's hard to focus on the service, because the shape of the pew aggravated my muscle inflammation.

I blamed my Lyme symptoms when I filled up a rental car with Premium gasoline, grabbed used towels at a hotel pool and took over a year to finish the thank you notes after my wedding.  After looking in on my cat when I was out of town, my friend said that my apartment looked like it had been hit by the mob.  It didn't bother me, as the fault for the poor upkeep of my place rested with my symptoms.  I have no idea how much being hyper-focused on my discomfort contributed to or caused those situations.  In many ways, it doesn't matter.  My responsibility for my actions and to those around me doesn't change because I have Lyme.  It's easy to forget how many people have their own overwhelming battles that they're silently fighting.  I don't know what others are going through nor do I continuously weigh their actions against their struggles.  I wouldn't expect them to do the same for me.

I need to force myself to step outside all of the discomfort and see the world from the perspective of someone other than myself.  Depending on how I'm feeling - which changes all the time - that's a lot easier said than done.  This is one of the great challenges presented by this illness.  I've fought this disease for years and while I'm always hopeful that I'm just one more Herx away from remission, the reality is that this fight could go on for months or years.  It's important that I don't spend the rest of my time with Lyme using it as as a crutch to justify my actions.

Our Lyme Debacles

Like many others suffering from chronic Lyme, it took me years to get a proper diagnosis.  Doctors alternated between diagnosing me with depression and fibromyalgia.  Had I been fighting for anything other than my quality of life, I would've given up long ago.  Searching for either answers or pain relief, I averaged roughly two appointments per week over an 11 year span - totaling to over 1000 appointments.

There's still a ways to go in my battle with chronic Lyme, but I'm relieved be able properly label my chronic illness and have a clearly defined treatment plan I can follow.  Since my diagnosis six months ago, I've been able to reflect on all the time and energy I spent searching for answers.  At the time, I was routinely frustrated by each new dead end and wasn't able to laugh at just how many ridiculous situations I got myself into.  It wasn't funny at the time, but with the benefit of hindsight, I'm finally able to see the humor in some of my debacle:

-   I joined a cult thinking it was a Yoga studio.  

-   A thoracic surgeon recommended permanently relieving my tight muscles via extraction.  

-   I saw a "world class" rheumatologist whose office was a shrine to his greatness.  He prescribed me controlled substances for conditions I didn't have.

Treatment debacles are inevitable while pursuing a debilitating illness that isn't officially recognized.  As I've met others struggling with chronic Lyme, I'm realizing that they too have stories and reflections from their quest for health that need to be shared.  

This blog is a place where people fighting chronic Lyme can share vignettes or thoughts from their quest for health.  Feel free to submit anything ranging from a couple sentences to a full story.  In addition to providing a community where we can share what we've been through, I'm hoping it will be a place for friends and family to go to learn more about how Lyme impacts our lives - and a place where people can gain an appreciation for how resilient you have to be to battle this illness.

Additionally, I hope to improve Lyme awareness so people can learn about chronic Lyme through our experiences  If all I knew about chronic Lyme was from statements by ISDA (Infectious Disease Society of America) and the CDC in major publications, I would be skeptical about it as well.

I want to avoid recommending/asking for treatment advice.  There are many other places on the web where we can discuss doctors, supplements, diets and medications.  This blog is for sharing the human side of the battle with Lyme. 

I'm looking forward to reading your contributions. 

If you would like to submit something - be it a few short thoughts or a story, please email LymeDebacles@gmail.com.