Wednesday, September 9, 2015

Mountaintopless: Why I Took Off My Shirt at 9,800 Feet

Well, the shortest and most obvious answer is: WHY NOT?!?!?!

But as is so often the case for those of us with chronic pain, behind the snapshot is a longer story of the struggle it took to get to that moment. Context changes everything. 

The night before this hike, I was awake until 3 am with a migraine, the wind furiously whipping the tent wall inches from my pounding head. Brendan and I were camped close to the bottom of Nine-Mile Mountain in the Rockies, and had agreed to hike it the next day if I felt well enough. (As I told him, "Don't put Maddie at the bottom of a hill if you don't want her to climb it.") All night I kept thinking about that peak, fixating on the idea of standing at the top... topless.

Maybe I've watched too much American Ninja Warrior. It seems to be a popular form of celebration for a certain set of athletic men to rip off one's shirt. While I usually roll my eyes at the excess of testosterone, that particular night I suddenly felt indignant that such a demonstration wasn't an option for me. So I decided I'd make it an option. I focused on getting through the night so that I could get to that summit.

When B woke up and rolled over to look at me in the morning, he could tell I was in rough shape. "You look awful," he said. "How are you feeling?"

"I didn't sleep much," I told him. "But right now we are going to get up and go climb that mountain. And if we get to the top, I'm taking my shirt off."

So off we went. We had to stop a few times for me to retch by the side of the trail. About halfway up, I said, "Right now, everything in my body is telling me what a terrible idea this was."

"I bet," said Brendan.

"That doesn't mean I want to turn around."

"I know."

And on we hiked.

Finally, victory. I stripped off my shirt and bra and stood legs wide, arms outstretched, mouth open. I call this pose "Welcome to My Party" after an art piece by Joyce Pensato; I strike it everywhere. It feels good both physically and mentally, simultaneously an opening and an embrace. But let me tell you, it feels that much better when you're topless at 9,800 feet.

We sat on some rocks for a while to soak in the view. Brendan munched trail mix, but I knew I wouldn't be able to keep it down. Then, B had the genius idea to forage some dandelion leaves for me. The bitter greens helped settle my stomach a little on the descent, but all I could do for the rest of the day was sit in the shade at our camp site.

It wasn't the longest hike of the trip. It wasn't the highest mountain we stood atop that week. But taking this snapshot was one of my proudest moments this summer. Not because I think it's a fun photo. Not because other people get a kick out of it. Not because I think I'm a badass for taking my shirt off. Because I know what it took to get there.

Chronic Pain Comebacks: Women In Pain Conference 2015 Preview

I am so honored to be a panelist at For Grace's upcoming annual Women In Pain Conference for the second year in a row! Building on last year's theme of "Accepting Our New Normal," my panel this year will address the art of the comeback.

What does a comeback look like when you suffer from debilitating chronic pain? The truth is, it looks different for everyone... and more often than not, it's a fluid process rather than a static achievement.

Just a few days ago, my fellow panelist Christina Kish and I connected with Lene Andersen for an interview about how we use unusual activities like burlesque and pole dance in our own ongoing comebacks. Check out the full article here, and I hope you'll join me in person or via social media for the WIP Conference on September 11!

Sunday, January 19, 2014

Why I'm Smiling (It's Not What You Think)

A year after the onset of my constant, unyielding headache, my partner Brendan came home from a visit with a close family member visibly frustrated. This loved one, on board since the onset of my pain, had made an offhand comment about how I couldn't be doing that poorly, since every time he saw me I was smiling.

Two years into chronic pain, B and I decided we could not put off international travel plans indefinitely and braved a 2 1/2 week trip to southern Africa to visit a dear friend in the Peace Corps. I vomited three times the first morning in Botswana, going on to average at least one pain-induced puking session a day over the course of our trip. But that first day, I was also given my Tswana name by a few of the locals in Molepolole: "Bitumelo," which literally means "happy." I was smiling.

Pain isn't always written on our faces.
These are just two quick examples of a situation the chronically ill/hurting face on a daily basis. Unless we spend the duration of an encounter crying, whining, or stoically silent, we open ourselves to questions like, "Do you still have [insert condition here]? You seem so energetic." Worse, others don't even ask; they make statements full of assumption: "You look so happy! You must be feeling better."

I understand why people associate smiling with well-being. Studies show that even doctors treat and prescribe differently based on a patient's physical presentation. (For more on this, see my piece on Gender Bias in Pain on Adios Barbie.) But let's face it, there are many socially-sanctioned reasons to smile. Many of them have nothing to do with feeling good, and when dealing with someone who has chronic illness or constant pain, entertaining only one interpretation of a smile can be extremely invalidating of our experiences.

A few reasons I may be smiling:
  • It's polite. In our culture, bright eyes and a smile are the easiest ways of making oneself friendly and approachable. This expression says, "I'm paying attention to what you're saying. I'm interested in you." And it isn't exactly socially acceptable to curl up in a ball and whimper, even if that's what I feel like doing.
  • I'm happy to see you, despite my pain. This is twofold: As a person who rarely gets out of the house, I genuinely smile as a response to seeing someone I love, but I also particularly make an effort to smile to show you that I'm happy to see you.
  • I'm protecting you. I get it. It's hard to maintain a relationship with me when I am so low-functioning. I want our time together to be pleasant, and I recognize that me acting like a Debbie Downer is depressing, and won't encourage you to hang out with me again.
  • I'm protecting myself. Sometimes, I just want to pretend I'm "normal" for a little while, to get a mental break from the discomfort and monotony that make up my days. Sometimes, I am in so much pain (or so exhausted) that I feel like I might burst into tears if anyone probes farther than polite greetings.
  • It releases endorphins, the body's natural painkillers. It may seem ridiculous to a healthy person, but I have to make conscious efforts to engage in activities that produce particular chemicals in my brain in order to reduce pain/stress and increase feelings of well-being. I eat certain foods, I meditate, I do yoga, I listen to music, I get out in nature... and I smile. It's one of many healthy, natural forms of self-medication.

This is by no means an exhaustive list, and it's important to recognize that the reasons those with chronic pain or illness might smile are as varied and individual as the people themselves. It's merely meant to open the door to discussion and personal reflection. Maybe the next time a loved one makes an assumption about your smile, you'll feel comfortable offering a gentle correction. Maybe the next time you see someone else smiling, you'll think twice before jumping to conclusions, and ask an open-ended question instead.

Why do you smile? Feel free to chime in in the comments section below, or join me on Twitter (suggested hashtag: #ismilebecause).

Thursday, December 12, 2013

Creative Cursing for Chronic Pain Relief

When I first learned that cursing helps pain tolerance, I couldn't wait to tell my partner Brendan. While I keep my language appropriate for the company I'm keeping (ie, keeping it squeaky clean around children, elders, and strangers), I do enjoy a good expletive and have never been shy to use one to emphasize a point. Thus, I got a real kick out of discovering that my fondness for certain swear words might help relieve my chronic pain.

Brendan was similarly amused, but brought up an interesting question: Is it the actual curse words themselves that provide the benefit, or simply the act of exclamation itself? We chuckled over the idea of vehement outbursts of "Butterflies!!!", "Unicorns!!!", or "Rainbow!!!"--words with traditionally positive connotations. But once we'd stopped giggling, I started to think about this idea in earnest.

For one thing, it isn't practical to apply cursing (in its conventional form) as a pain-reduction technique precisely because of the audience concerns I raised above. It isn't socially acceptable to go around muttering expletives under one's breath (and as far as I'm concerned, this is a good thing!). But there are other problems, too. Recent studies show that the more one swears, the less the pain-relieving benefits. Beyond that, even someone as curse-friendly as I am has to admit that these words have a negative bent that I don't particularly want to reinforce in my life. But it can't be denied that these words do express anger, frustration, or pain better than words like "Mermen!!!" or "Cinnamon buns!!!"

Enter creative cursing. I began inventing my own "cusses," with all the satisfaction of the hard, explosive sounds most expletives contain, but without the negativity they connote. And as I did, they started to morph and change into new words. It became a game. These days, I am constantly coming up with new nonsense curses, much to the amusement of myself and those around me. After all, who can really keep a straight face after a string of curses like "Punkmonkey!!!", "Crunchbubbles!!!", or "Punchbucket!!!"?

So go ahead. Cuss up a blue streak. And by that I mean, start with "Periwinkle!!!" and run with it.

Friday, November 1, 2013

This Blog, It Is A-Changin'!

It's been over a year and a half since I've posted here. Indeed, until my return to Twitter about a month ago, it had been a year and a half since I posted on any public social media platform. This may seem bizarre given my career in online community management, but there are good reasons, both practical and personal. I suffer from constant, severe head pain (with migraine flares), which makes looking at a computer screen for any length of time pretty problematic. But beyond that hurdle lies another, bigger hangup: I have been living in shame.

I'm no stranger to this struggle. As an eating disorder and rape survivor, I have fought back my fair share of shame demons. As befits the woman my partner calls the Queen of Communication (that's me!), I dealt with these issues in large part by talking about them--not only to a therapist, to support groups, to my friends and family, but also to the public through performance, writing, and social media. My natural response to a socially taboo topic is to break the silence, loudly and repeatedly.

I've had this condition for over 3 1/2 years now. So why has it taken so long for me to break this silence? Perhaps it relates to the fear of drawing attention to one's physical ills that I mentioned in my latest piece for Adios Barbie on Gender Bias in Pain. Perhaps it's the daunting prospect of attempting to explain my illness that overwhelms me. There may be some fear of rejection; I would rather disappear quietly from people's news feeds, Twitter streams, and consciousness than face the fact that many of those people would quickly unfriend and unfollow me should I start representing my new self accurately. But more than anything else, I think, I have been ashamed that I am no longer the person I was before the pain. I have been afraid to admit publicly that my old life has completely fallen apart, and my new life is anything but glamorous. I don't want to admit it to the world, because I don't want to admit it to myself.

The 6th Annual Women in Pain Conference gave me the wake-up call that I needed. During the discussion of coping missteps and pitfalls, panelist Lynne Popadak (Co-Organizer, USC Quench the Fire Run) spoke movingly about the pressure to be strong and independent, to hold onto the person she was before pain and to continue to present that person to the world. Another panelist, Britt Johnson (aka The Hurt Blogger), talked about "putting [her] best face on," and the freeing power of honesty with friends and family. As the conference progressed, I started to hear a common refrain from many participants: social media (and the pain community therein) is a lifesaver when it comes to feeling connected and validated as a person living with chronic pain. And it hit me. If I wait until I'm "ready," until I feel secure, until I have it all figure out, I will never tweet, blog, or perform again. I will never be "ready." I have to start now.

Within a few days of returning from LA (an ordeal in itself), I unceremoniously started tweeting again. The rewards were almost instantaneous; Britt welcomed me with [virtual] open arms and I had positive interactions with several other WIP Conference speakers. And while many of my followers did unfollow me, I similarly unfollowed many of them. We simply had no common ground anymore. And that's ok. I found new tweeps with whom I share more, and having less industry news in my stream (reminding me of my lost career) proved extremely good for my mental health.

Encouraged, I am now slowly beginning the process of reforming my social media presence, creating more harmony between how I am represented online and who I am today. There are many things about me that remain the same: I love my family and the friends who've stuck by me as much as ever--if not more. I'm just as passionate about social justice. I still revel in edible gardening, cooking, writing, dogs, and roller derby. But I am no longer the energetic community manager who can work 60 hours a week on a Quantcast Top 100 site, and socialize 4 or 5 nights a week. I am a woman in (as yet) untreatable pain, mostly homebound, who saves her spoons all week for one carefully-planned outing. And as such, I still deserve a voice.

So there we have it. Welcome to my Ruud Awakenings.

Friday, October 25, 2013

On Adios Barbie: Gender Bias in Chronic Pain Treatment

Now live on
As a woman 3 ½ years into a constant, severe headache, I think, talk, and read a great deal about pain. I also think, talk, and read a great deal about gender. Strangely enough, it took me a long time to think and talk about the two issues together -- how they intersect, interact, and influence each other. Before I attended the 6th Annual Women In Pain Conference this September, most of the exchanges I had relating to the experience of being a woman in pain involved modestly deflecting offhand comments from (female) friends to the effect that my (male) partner probably wouldn’t be dealing with my chronic pain condition half as well as I am. But in the weeks both preparing for and following the conference, I made it my mission to discover just how large of a role gender plays in the experience, expression, and treatment of pain.
Read more on Adios Barbie...

Wednesday, March 28, 2012

On HuffPost: What NOT to Say to an Eating Disordered Friend

Now live on HuffPost Teen:

So you've just found out that your friend or family member is struggling with an eating disorder. You want to be supportive, but you're not sure what to say, and before you know it, your friend is defensive and angry or (perhaps worse) completely shut down. What went wrong?
The fact is, eating disorders are complex mental illnesses. Without a basic understanding of how an eating-disordered mind works, you can easily stumble into trouble. As someone with a long history of personal struggle, I've used my insight to compile a list of the most common mistakes people make in this area.

Read more at Huffington Post...