Important! Update

It's recently been pointed out to me that Blogger (blogspot.com) is owned by Google and is fairly static in terms of changes you can make.

On the other hand, Wordpress is open source, more adaptable, and overall a better entity. Plus, I made my blog prettier.

Therefore - I'm switching my blog to a wordpress blog. Sorry to those of you who've just come to this URL.


The new address for my blog is: http://healinglesstraveled.wordpress.com/ 

Aimee Mullins and her 12 pairs of legs

Aimee Mullins and her 12 pairs of legs | Video on TED.com

This is an amazing video about a woman and her 12 pairs of prosthetic legs. She discusses ways that her "disability" has created opportunities and experiences that she never would have had otherwise. There's a lot of good empowerment their. Plus, some of those legs are really beautiful artwork.

Description from the TED website:

"Athlete, actor and activist Aimee Mullins talks about her prosthetic legs -- she's got a dozen amazing pairs -- and the superpowers they grant her: speed, beauty, an extra 6 inches of height ... Quite simply, she redefines what the body can be."

"Skillful" reactions to pain

I had my first "topic request" for a post. (Please pass on more requests in the comments section, or as an @ request on the Twitter feed.) A friend asked me to write more about my reaction to pain mentioned in the previous post. She described my reaction of "Oh, I'm in pain...it will pass" as being potentially very alien to people.

I've drawn a lot of inspiration and methodology from mindfulness meditation, so a lot of what I'm about to say is my interpretation of wise things I've been told. I learned a lot of this from Insight Meditation Community of Washington (IMCW) meditations I've attended. One of the people who leads discussion after the meditation is Jonathan Foust. He actually has a 30 minute (or so) podcast about "Working with Pain" on his website. If you've got the time, it's a wonderful talk. There's also a guided meditation mp3 on the same page.

I could talk about a lot of pain theory and techniques, but instead I think I'll describe one of my first IMCW meditation experiences. This was the experience that made me really "get" mindfulness meditation, and totally convinced me how wonderful it is. It was also a - pardon the pun - insightful experience.

Jonathan was leading a meditation/talk on pain. The meditation involved doing what's called a "body scan." After settling into a comfortable seated position, I took a few deep breaths. The idea for mindfulness meditation is not to try to "induce a particular state of being," but simply be with what is happening for you right now, in this moment.

In a body scan, you start with a particular place in your body - usually either your head or your feet - and focus on trying to fully experience what's going on in that part of your body. Usually Jonathan starts with the crown of the head and the scalp...your face...your neck...your throat...your right shoulder...your left shoulder...the upper arm...the lower arm to your wrists...your hands...you get the idea. Jonathan usually leads you through the body, and then gives less guidance as the meditation goes on.

I realized several things during the meditation. One was realizing how much pain I'm in all the time. As I focused on each particular area, at first it seemed as though there was no sensation. It was as though I'd numbed everything out. Then there was a kind of release, as my body acknowledged that the pain was there.

The funny thing about focusing on pain is that it's really not as terrible as you think it's going to be. I had a moment of thinking, "This is pain. I am in pain. But this pain cannot hurt me, that integral part of me that is beyond my body." I don't know if that sounds very Pollyana-ish, but for me it is a very freeing thought.

I also noticed that the pain doesn't stay constant. One moment I'd be focusing on pain in my shoulder, and I'd notice how it burned a little bit. Then, it would go away, only to be replaced by pain in my shin. The shin pain might be tingling or stabbing or sharp or dull. As I focused on it, it would generally recede and move to another part of my body. Sometimes, it would return to my shoulder. I thought to my pain, "But how are you hurting again? You didn't hurt, and now you've started again. Is this pain even real? I feel it, but it's not constant."

Here's an insight from Jonathan Foust and personal experience. Try to do a meditation where you focus on what stays the same in your body. Tip: everything changes.

Something Jonathan mentioned in the talk after the meditation was that "other people feel this, too." And it's really true. I looked around the room, and there were people with canes. A woman talked about her chronic (and life-threatening) illness, and a very similar experience during the meditation. I realized that just because I have fibromyalgia does not mean that I have a monopoly on pain. And really, everyone feels pain. The little kid who skins his knee. The person who grieves for their dead lover. The person who greives for the lover who cheated on them. Pain is part of the human experience - but it doesn't have to control you or dictate who you are.

As I left the meditation, I realized something else. I wasn't in pain anymore, even though I'd been in near-agony at times during the meditation. It was as though my body just needed me to stop and listen for awhile. Once I stopped running from the pain and numbing it out, the pain just...released. My body unclenched. To put it another way, I let go of the negative energy.

That's not to say that meditation always helps stop my pain. Remember that whole "not trying to induce a particular state?" That applies to meditation-for-pain-relief. Even if the meditation doesn't stop my pain, I still think it's a valuable pursuit.

Mind-body connection

I read an article, "Is it All in My Head?", from Psychology Today recently, and I really feel like it has a lot of good content about the role of the mind-body connection in chronic pain syndromes.

"Capping her frustration, Howard cannot be sure to this day why she became ill. But her best guess is that the self-imposed stress of her ambitious lifestyle played a role....Howard's suspicions are confirmed by many researchers, who are coming to believe that psychological factors play a crucial role in perpetuating many physical illnesses, particularly a subset of chronic ailments that defy logic, diagnosis or a cure. It seems that the way you think about your illness can actually affect how sick you get.

These "multi-symptom illnesses"—which include chronic fatigue syndrome, fibromyalgia and potentially others such as Gulf War syndrome, irritable bowel syndrome and the condition known as multiple chemical sensitivity—have provoked intense controversy. Because they have no obvious biological cause, some doctors and researchers dismissed them in the past as hysteria or the "yuppie flu."

Many patients, in response, became equally determined to prove that their disease was just as real and as biologically legitimate as heart disease or breast cancer....

However, the war between doubters and advocates has waned. The consensus is that these illnesses are truly mind-body diseases, in which biological and psychological causes and dysfunctions are inseparably intertwined. The mind seems to play a key role in kick-starting and perpetuating illness—but it's not that sufferers are simply malingerers. Their bodies are sick, and their reaction to the illness often makes it worse." [emphasis mine]

I definitely would have had a hard time hearing this when I was first diagnosed. I was in the "camp" trying so hard to justify my pain to people who didn't seem to understand. Heck, I even had a "Fibromyalgia is Real" awareness bracelet.

That mindset didn't help me get better. I just stayed trapped in what Buddhists would call dukkha, or suffering.

Allowing myself to feel pain - but not dwell in pain - is probably the single most important lesson I have learned from my experiences with fibromyalgia, if not my life.

For example, here is an "unskillful" way of thinking of pain: "Ow, I hurt. It's that damn pain again. When will I ever feel better? I'm never going to feel better. I'm always going to hurt. I'm never going to get a job with health insurance, either, and then where will I be? Unable to afford my medications, in pain."

Do you see how I've constructed a story there? A more skillful way of thinking of pain is: "Oh, I'm in pain. That hurts. It won't last forever - and a nice hot shower will feel really good right now. I think I'll go rest up a bit, do some stretches, and hopefully feel a bit better. Oh, and I was going to read that book - I think I'll curl up on the couch and read it."


There's a really good quote from Robin Wood's When, Why ... If that I think sums up this more constructive way of thinking:

"We must look at things honestly and fearlessly, and in order to do that, we must not pre-judge them. We have to be objective, and learn to see clearly. 

We must not punish ourselves for our shortcomings....If you want to 'pay for your wrongs' isn't it more sensible to fix the undesirable outcome than to banish yourself endlessly and just let the outcome stand? And if there was no undesirable outcome, then what is the problem here?"

 I could write more - and probably will at some point - but I hope you get the idea.

Ability's Invisible Knapsack

This is actually something I wrote a year-and-a-half ago, but I think it's still relevant today. I would also add the caveat that thinking only in terms of what one cannot do is not a healthy endeavor. It can be empowering to think about changes in privilege and perspective resulting from major life events. It can be even more empowering to see how many of those glass ceilings you can bust wide open.

***

A few years ago, I encountered Peggy McIntosh's piece, “White Privilege:  Unpacking the Invisible Knapsack.”  In it, she talks about race, racism, and privilege in a way that was unfamiliar and eye-opening for me.  She states that, “As a white person, I realized I had been taught about racism as something that puts others at a disadvantage, but had been taught not to see one of its corollary aspects, white privilege, which puts me at an advantage....White privilege is like an invisible weightless knapsack of special provisions, maps, passports, codebooks, visas, clothes, tools , and blank checks.”  She created a list of fifty privileges she had as a white person that people of color do not.  Her work inspired me to look at racism and my own privilege in new ways, and ask new and difficult questions of myself.  How do I contribute to racism?  How can I share or give up some of my privileges?  Am I unintentionally oppressing others in my everyday encounters?  I haven't come up with concrete solutions on an institutional scale, but I hope that I have been able to change some of my everyday actions in a way that challenges white privilege.  I hope that, in the process, I've become a better ally, not just to people with a different skin color, but to people who are different from me in general.

I also have an invisible difference.  [Four] years ago, I was diagnosed with Fibromyalgia.  Fibromyalgia is a Rheumatoid “syndrome,” or collection of symptoms.  Doctors don't know what causes it, and diagnosing it can be difficult.  Its main symptoms are pain and fatigue.  Until the 1980's, medical professionals did not even have a classification for Fibromyalgia.  Fibromyalgia primarily affects women; women with Fibromyalgia were discounted as being “hysterical” or prone to exaggeration.  Being diagnosed with Fibromyalgia drastically changed my life and led to a loss of privilege. I began to think of all the assumptions I'd held about people in wheelchairs, or the health classes I had dozed through in high school when they talked about chronic illnesses.

Disability status is something that can change, as race cannot.  It is also more easy to ignore, as many chronic illnesses are invisible.  In most cases, you cannot look at someone and see that he/she/ze has HIV, or Fibromyalgia, or Heart Disease.  At least in my case, when I was able-bodied I went through the world completely unaware of the ability privileges I held.  I have found that it's often difficult to communicate with people who have never experienced disability before, either through their own ability level or a close relationship with a friend or loved one with a disability.  I find myself playing “educator” a lot, a role which can get tiring rather quickly, especially when you are already dealing with fatigue. 

At the suggestion of a friend, I decided to write something modeled after Peggy McIntosh's work.  In the following list, I write about “everyday” privileges I used to have as an able-bodied person.  I use the present tense, to make it more relevant and accessible for people who currently have able-bodied privilege.  Although I have co-morbid illnesses along with Fibromyalgia, I decided to focus on that illness in particular.  In addition, it should be noted that my experiences are not the same as every other “disabled” person, or even every other person with Fibromyalgia.  However, I do believe they share common elements, even if the specifics are not the same.  My hope is that people will find new insight into their own assumptions about their invisible knapsack of ability privilege, just as Peggy McIntosh helped me realize new things about white privilege.

1. I can wear whatever clothes I want, without worrying that wearing them or putting them on might hurt my body in some way.
2. I do not have to remember to take medication, or suffer the consequences of forgetting.
3. I do not have to worry about the side effects of my medication.
4. I have never had four doctor's appointments in one week.
5. I have “sick days” instead of sick months.
6. I do not have to “out” myself as a disabled person, or worry that people will treat me differently because I am disabled.
7. I am able to drive myself places when I want, without worrying that I'll get too tired to drive myself back.
8. I can go to school full time, if I wanted to.
9. I can have a glass of wine or a bottle of beer if I want.
10. No one has ever ended a budding friendship because they were afraid of my illnesses.
    
    

An Introduction

This blog is intended as a place for me to reflect on my own healing journey, in the hopes that others may also gain insight from my experiences.

I've "borrowed" a line from Robert Frost's poem, The Road Not Taken:

"Two roads diverged in a wood, and I--
I took the one less traveled by,
And that has made all the difference."

I really feel as though I was on railroad tracks leading me to Success. I worked hard in high school so I could have the perfect combination of extracurriculars and coursework to get into a prestigious college. I expected to graduate in four years from a prestigious university, join the Peace Corps for two, go to graduate school in something, get a Career, fall in love, get married, have a house with a white picket fence and two children...

If that had happened, I think I would have woken up sometime in my 40s, 50s, or 60s and wondered, "What the hell happened with my life?"

Life did not go as expected, as it so rarely does. What most people don't teach you in childhood is that eventually, everyone is visited by sickness, old age, and death (to borrow from Buddhist teachings). Dear reader, you may think I am being morbid. Yet realizing that someday all of this is going to end is a profoundly liberating experience. But that's for another post.

How we respond to these inevitable life passages of sickness, old age, and death is a life-altering experience.

I just happened to experience it fairly young, although by no means younger than everyone. When I was a teenager, I fell headlong from a "successful" senior year into a psychiatric hospital. After a misdiagnosis of depression, trying to attend my prestigious university, and a suicide attempt, I was diagnosed with Bipolar Disorder. I had a series of hospitalizations while doctors tried to find the right medication "cocktail." I eventually had electro-convulsive therapy (ECT), which seemed to jolt me out of my mood swings. Say what you will about medications, side effects, hospitals, and ECT - those things most certainly saved my life. Talk therapy was also immensely helpful.

So there I was, attending a local university with the help of medication, therapy, and a bag full of coping mechanisms. I began experiencing frequent sinus infections, pain all over my body, difficulty getting to class or even therapy because I was so tired, and a number of other symptoms. I was diagnosed with Fibromyalgia, a chronic condition with causes pain and fatigue. More on that condition is definitely coming in a later post.

My "plan" (or road, if you'll humor me) became much more complicated. I faced the prospect of never being able to work full time, of being in pain always, of taking medication my whole life.

Sickness, indeed.

After my initial fibromyalgia diagnosis in 2005, I felt pretty hopeless. I lost a lot of friends, and was fairly socially isolated. I didn't exercise much, because I was afraid of the pain it would cause (Note: probably the worst thing I could have done). My depression came back, creating a feedback loop with chronic pain symptoms: pain -> more depression -> more pain -> deeper depression -> and so on. It was not a good time.

With a lot of work, I'm getting my life back again. I graduated from college, I worked a paid job for awhile (very part time) until it became impractical, and I've begun an exercise program. I still deal with a number of challenges, such as pain flares, difficulty working more than a few hours a week, a ka-razy sleep cycle - you know, life.

But hey, it's getting better all the time. It's not a linear journey - it's more like two steps forward, one step back. I know there will be more times when I'll face sickness, old age, and death.

I think the most important thing for me is that I now feel empowered to be a force for positive change in my life. And that, my friends, has made all the difference.