“Go Have an Experience”

Having a chronic illness keeps us away from so many experiences for so many good reasons. There is the extra-ordinary hard of doing ordinary things on a bad day (putting on socks, making tea, sitting up), but then there is also the ordinary hard of doing things that make us feel alive on a not-so-bad day. I’ve had a string of better days over the past few weeks and have needed to push myself to soak them all in. It has felt harder than I would have expected. In fact, I have needed a refrain, “Go Have an Experience!”
Yesterday I was taking the ferry from Nanaimo to Horseshoe Bay after a long but rewarding day and I was tempted to just stay in the car with my wife and my little hound. I had my yoga mat. I knew that an evening practice out on the deck facing the water and sunset would be freaking magical. But I still hung back. It felt overwhelming and a little intimidating. I knew it would shift things for me and even good shifts can take some extra energy.
I had to tell myself to “Go Have an Experience!” And it was so perfect it was unbelievable. It was the kind of thing I will remember on the harder days when I need to hang onto what “better” feels like. 
What is your capacity today? What would make you feel more alive? Is it possible to “Go Have an Experience?”

Why the Slogan “Lyme Lives Matters” is Not Okay

I’ve said it before– I want a big, powerful, in-your-face Lyme activist movement. I want folks to take to the streets. I want the people neglected by the CDC and IDSA policies and their allies to have sit-ins in government offices and refuse to leave till the unethical studies and conflicts-of-interest with insurance companies are addressed and chronic Lyme is recognized, well-researched, funded, and treated. There is one group who is doing some of these things that I am not joining. Why? They have chosen the slogan “Lyme Lives Matter.” 

Come on, people. The slogan is from the Black Lives Matter movement. Black Lives Matter was created after 17 year old Trayvon Martin was murdered. The movement rallies around addressing state and other violences that disproportionately attack Black people who are killed by police and sent to prisons when similar actions by white people do not result in immediate death penalty on the street or prison time (the movement is broader than this, please look them up!). This is an important and critical movement in the face of 300 years of enslavement and anti-black racism in the U.S. 

And what did white people do as soon as the movement began? They began using the phrase All Lives Matter in its stead. Yes, people who could understand that we talk about raising awareness for breast cancer without talking about “all cancers,” refuse to acknowledge that specifying that Black Lives Matter is necessary in a movement to end systemic practices that act as if those lives do not. Substituting “Black” with “All,” acts antagonistically, rather than in solidarity, with the Black Lives Matter Movement. It is corrective, telling Black people to reword their own movement to not make their community central in their own struggles. 


There are so many problems with the movement to recognize Lyme appropriating this slogan. To name just a few:

  • Issues raised by Black Lives Matter are different from the work to recognize Lyme. Changed CDC guidelines, covered treatment, better research are different from facing generations of racialized oppression.
  • Racism and white privilege still exist for folks with Lyme disease. As a white woman with Lyme disease, I do not face police violence and incarceration the way that a Black person with or without Lyme disease does.
  • It constructs the Lyme movement as white (I have yet to see a Black person use the Lyme Lives Matter phrase, this is not a fluke) and further alienates people of colour.
  • It places the movements in competition, or as being at odds, with each other instead of placing the onus on any health-based activism to look at how race, class, and gender all play roles in accessing diagnosis and care (e.g. disproportionate numbers of people of colour live in poverty and therefore, in disproportionate statistics, are not be able to access expensive Lyme treatment; Western medicine routinely and disproportionately dismiss women’s symptoms).

In a culture where white supremacy continues to dominate, it’s so very, very important that white people do not appropriate the work, slogans, and activism of movements run by people of colour.  There are many alternative slogans (see pictures). Make new hashtags, it’s not hard. How about something about getting the CDC out of bed with insurance companies? Or just “Lyme Treatment Now!”

And seriously, white people, we need to have dialogues with other white people about ending white supremacy and racism in movements for Lyme disease and chronic health issues.

Whose Bodies are “All Bodies?” Accessibility and Yoga Communities

I never try to “keep up” in a yoga class. I adapt the hell out of any practice to make it my practice for my body and not for someone else’s. That said, we’ve seriously got to look at who is included and who is alienated by the gap between how so many classes are described and what actually happens in a class. I remember the fallout the happened when a class in BC was billed as “All Bodies Yoga” because of their lovely priority of making a safer space for a broad spectrum of sizes and genders… but the class was held in a studio that was up a flight of stairs! Whose bodies were part of “All Bodies” and whose bodies were left out? The gaps aren’t always as obvious as a flight of stairs. 

In February I went to a class that was described as an “accessible” class for all abilities. The class itself was dizzyingly fast paced and based on active, strength based poses with no alternatives offered. I wasn’t adapting a practice, I was doing a completely different practice with some concern that people’s flying legs might hit me on their way back down. It was not advertised as hot yoga but the temperature was hot enough to bring on a fever flare for me for a couple of days. It was tightly packed and people’s products started to make me dizzy which also took me days to recover from. I have no problem with the class in and of itself, but had it been advertised as a vigorous flow class for those who can tolerate high heat, I never would have had the health fall out from having tried to go. 

This summer, I was at a much beloved outdoor music festival where they offered small Seatedyoga classes in different corners of the park. Just being at the festival isn’t easy on my
body and I excitedly welcomed this space as a chance to have a practice with other people. The program stressed that is was for everyone of all abilities, stating that we were welcome if we “have a body and are breathing.” The whole class was then conducted standing with muscle building repetitions and balance poses. I can understand having a standing class in a park, but how about advertising it as an active, standing practice suitable for people without mobility or balance concerns? Either that or have two teachers, one to offer alternatives to each pose.

In both cases the alternate wording would require folks to be real about the exclusion of

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Much of my practice is seated. 

people with disabilities that is occurring and either work to change it or acknowledge that solving this exclusion is not a priority. Why does this matter so very much? I know that I am not recounting trauma and that folks (including myself) are facing much more grave issues everyday. However, despite the abundance of wealthy, white, able-bodied women doing yoga, many folks seeking a community of practice share little to nothing with this demographic. Many people seek yoga to find a space to learn to feel safe inside their skin, to heal from damaging events, and to eke out a space to love themselves when feeling otherwise betrayed by their bodies or within a larger culture that is rife with messages that particular bodies are not loveable. 

How important is it, then, that when we seek such spaces we are not met with implicit or explicit messages that “our bodies” are not included under the banner of “all bodies.” We need to not be further alienated by the message that having a body that is breathing does not include our ways of having bodies. If claims of accessibility are to be made, they need to require a conscious effort to be just that. Let’s work to create more spaces where “all bodies” can include ever increasing ways of having bodies–both on and off the mat. 



“I can trust my own memories and no longer need the record:” Down-sizing and Healing

I’m not a minimalist. My wife and I have an entire shelf that is full of special objects from trips we’ve taken, anniversary gifts, and woodsie decorations from our wedding. As I spend more time than I wish to on my living room couch, having space for memories I treasure is a solid source of strength for me. This said, we recently went through a substantial downsize in order to move from a 2 bedroom house with storage to a small 1 bedroom cottage with no extra space. I struggled with this. The move was necessary because the house we’ve been living in sold unexpectedly and things are tight for us financially right now. Unsurprisingly, this is just the kind of situation where having a yoga practice is really freaking good for supporting my work to come to terms with what is happening. I don’t have to love it, I just need to see what I can do with what is.

Two parts of this downsizing required me to take a tremendous look at what I did not need to carry with me anymore and damn, this was some hard heart work. The first, involved clearing out some cabinets that I have moved around with me for years but had long-since stopped using productively. As I went through them, it appeared that I had been stuffing everything I didn’t want to deal with in their drawers and folders for about 20 years, from photographs to forms. While clearing it out, I leafed through pictures of myself in my early 20s– vivacious and engaged, my cheeks usually flushed from a recent hike, yoga practice, or other adventure. Among the pictures from this era was a photo of the last day that I saw my grandmother. The day that  I realized I needed to cut off contact. I was 22. There it  was–I was pale, almost grey through my face, my eyes were glazed over–I simply was not there.

So many people who have faced trauma have also faced friends and family telling them not to believe their own truth. Many are given reasons why their abuse couldn’t have happened and consequently struggle to believe the gravity of their own experience. I was no exception to this. As soon as I looked at the picture I was struck by the truth that it told, how strikingly my body spoke the trauma that I had yet to articulate with words. I was torn with two immediate impulses: rip the picture to shreds and keep it to validate what I know to be true in my life. In the end, I did neither. I simply didn’t keep it. I realized that I now trust my memories well enough that I don’t need to hang onto it. 

In addition to photos, I have carried several dozen old journals with me over almost two decades. As I prepared to release what I did not need to carry, I leafed through their pages. In the seemingly endless processing sprawled in over twenty spiral bound notebooks, there was so much grappling as I learned to trust myself and my experiences and face the simple but hard to hold truth that those who claimed to have loved me had inflicted deep harm. These days of downsizing were fraught and it took all my self-motivation to continue my yoga practice through each one. Yoga is a sure way for me to feel all the feelings, emotional and physical, and staying in touch with myself in this way was such a challenge. As I’d return to my mat, another truth emerged in my body–that I can trust my own memories and no longer need the record. I found a local park in the woods that had a bonfire pit for day visitors and my wife and two lovely friends fed the journals to the fire while we talked and sang songs of release. As they burned, the pages lit and opened, turning as they became embers. This was a beautiful ritual, rooted in a new stage of healing. 

There is currently much debate about the “right” way to deal with clutter, whether it is better to own a lot or very little. I don’t pretend to know the answer to this and strongly suspect that it, like so many things, is highly individual. What I do know is that we moved a few days ago and the new space is feeling just right for us. It has room for some of our special things, but it does not have room for what I had been carrying in order to trust myself and my memories. And it no longer needs to. 

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