Giving up the able-bodied charade (Spoonie series 10)

In 2016, I led a group titled Living Chronically for folks living with chronic pain, disability, or illness. The participants were amazing. The heroics they went through to get up and get to the group and hold a supportive, reflective, and often silly  space was pretty damn remarkable. On the first day I remember encouraging everyone to make themselves as comfortable as possible but even as the words were coming out of my mouth, I noticed that it sounded like a sad mockery. Make ourselves comfortable? Our lives were often shaped by the gnawing pain and discomfort we constantly lived in.

In place of this statement, we took up the phrase, “if there is anything you can do to ease any of your discomfort, we’ll support you in doing that.” Everyone had an opportunity to say what that might be. For one person, it was moving to a space without overhead lights, for another is was being able to lie on her side on the floor. We supported each other in shedding some of the baggage that prevented us from being able to do this in most social situations (and often led to our being socially isolated as a result). We had internalized some of the dominant cultural crap around being seen as too needy or taking up too much along with the social stigma that comes with not keeping our illnesses under an able-bodied facade. And the support helped. Many folks were able to make it to the group when they wouldn’t have made it to other events where they felt additionally compelled to appear to be without pain. This was great for group dynamics and has also stayed with me as I work to live with ongoing chronic pain. It has even impacted my yoga practice, not in terms of asana, but in my prioritizing my practice in unconventional times and places. 

Lyme has really reduced my capacity to be out in the world doing everyday things for anywhere near the lengths of time that I used to. My legs start throbbing if I stand for any amount of time. My body cramps up if I sit too long. I get exhaustion walking. Lights and noise make my pain flare. I do what I can, but there is much that is just a really tricky balancing act. Often restorative yoga can help as a kind of “reset” for my body. If I can stop mid-day and release some of the tensions building up, I am better able to go from one thing to another. Its been awhile since I’ve lived in the centre of things, so being able to do this has relied on me bring my yoga mat and finding a place to flop and tune into replenishing my oh-so-easily depleted body.

I’ve carried my share of self-consciousness about this as I’ve gone about finding a corner of a park, an area of a ferry, a side room at a gathering. My yoga is not 2014-02-23 15.33.45glamourous. There are no impressive backbends or headstands. The Living Chronically group was invaluable to helping me externalize the shame that comes with failing to attain an able-bodied pretence. Recently I was doing yoga on a ferry to Vancouver Island and could hear the odd passerby talking about it, “no that’s Cat/Cow pose, that’s what it’s called–Cat/Cow.” Another time, “oh hmm, I guess I could do that. I just need a mat.” Yep, just a mat… and an ability to over-ride disapproving glances and stay steadfast in my commitment to care for my chronically ill body. 

Let’s make spaces where we support each other in doing whatever we can to ease whatever discomfort can be eased.

Let’s hold space for what our bodies actually need and not how they can appear the least disruptive.

Let’s give up the able-bodied charade! 1930526_37069167596_3629_n

 

 

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The Art of Not Pushing Ourselves (Spoonie series day 9)

One thing that sets chronic life apart from able-bodied life is our relationship to pushing ourselves. I was no stranger to this before Lyme. I’ve had chronic migraines all my life and a trauma history that made me have to push to get through my day often. But I would get through the day when I pushed. Now, not so much. Too much pushing and my limbs stop moving.  

[I also recognize that we’re often pushing ourselves to get through the day. To eat our lunch, to take our meds. there is a different kind of pushing I’m hoping to articulate here.]

I am the sort who thrives on building a new skill set and on finding ways to do what I thought I could not do. I’ve juggled multiple jobs while doing graduate degrees and writing children’s picture books while in chronic pain. But I could do it. Last week I accepted an offer for a Really Good Job. I knew it would be both high stress and a high learning curve, but I was fine with that. I rested on my pre-Lyme narrative: I’ve got good brains and I don’t give up, I was sure I would figure it all out. I was also delighted to be using my PhD skills and to work at a wage that would finally have us able to pay down debt and not be scraping the bottom of the barrel paycheque-to-paycheque.

But it quickly became clear that to do what I used to do, to push myself to step up and focus and work like stink until I got it, would do great damage to myself and my health.  Rather than being able to “buckle down,” the stress immediately caused my pain levels to rise and I was, at once, battling debilitating exhaustion and fatigue. This triggered a Lyme anxiety loop that had me unable to work with clarity. To top it all off, my Multiple Chemical Sensitivities worsened and my breathing became compromised. Living with Lyme, I can risk relapse to the worst stages and that’s not a place I want to have to come back from again.

I left the job. It was really hard. I have taken a job with less hours, a third of the pay, and that does not require any of my education. It is the kind of work I have done before and already know that I do well. This is not what pre-Lyme me would have done, but this is what I had to do. We’re broke again, of course, and I really hate how people with disabilities are so often living in poverty because of how the larger capitalist system works. I’m grappling with all of this but know that it was necessary. 

In his wonderful book, Exile and Pride: Disability, Queerness, and Liberation, Eli Clare IMG_1852describes a time when he was mountain climbing and turned around due to slippery climbing conditions and his precarious balance because from Cerebral Palsy. He tells of how his friends offered him pep talks about how he could maybe go back and climb the mountain in better whether or with better gear, assuring him that he could do anything. He writes of the difficulty to over-come the pressure that we must keep trying to overcome limitations and notes that not one person heard his story and affirmed, “you made the right choice,” in regards to his decision to turn around.

I was offered many pep talks and much support from friends this last week. I appreciate all of it, but I didn’t need the encouragement to push forward. That voice is already firmly planted in my psyche. The most useful interactions I had were from those who reflected that it is okay to turn down what I would otherwise love to do and that I was making the right choice to see the limitations I have and work within them.

So if you, Chronic Yogi reader, need just such a reminder today, I will offer this:

It is okay to turn down what you would like to do because you cannot do it.

It is okay if your relationship to being up for a challenge must change to do illness.

It is okay to grieve the missed opportunities,

And it is okay to stop and turn around anyway.

You made the right choice.  

“What if it stays this bad?” Chronic illness and managing The What Ifs (Spoonie Yoga Day 8)

When I am doing better, my yoga practice gets to be more active and I love it. I find it way easier to stay interested in the practice, it invigorates my body and energizes me. When I’m having a Lyme flare, I can’t do anything active. My practice revolves around propping myself gently into different restorative poses and breathing through them. This gives my brain plenty of time to drift into The What Ifs. 

The What Ifs play through my head in a cyclical loop as soon as I’m having a flare. The themes go something like this:

  • What If it stays this bad?
  • What if I can’t handle the pain this time?
  • What if it takes years to get back to where I was?
  • What if I can’t work (or walk, cycle, cook, get out of bed, cut my own food) anymore?

There are no answers to these questions. Sometimes the flare is just for a day but it Larabee Meditation 2can last weeks or months. I don’t know what I’m in for when I wake up and am plastered to my bed (or I crash mid-errand) and this makes a ripe environment for The What Ifs. Almost everyone with a chronic illness seems to need to contend with The What Ifs. There is plenty of writing available on how to manage them, some stressing the power of positive thinking, others the importance of non-attachment. I’m all for this, there is no one solution, folks are bound to experience and thus need to work with The What Ifs so differently. 

There’s a really tricky point for me: If I tell myself that it will be fine, the “what if it won’t” loop plays louder. It is highly vigilant and does not want to get “tricked” into believing what might not be true. There are two things that help my brain to relinquish The What Ifs:

  1. To tell myself that I don’t know yet and allow for uncertainty. This side steps the part of my loop that will reply to any positive assurances with “yeah, but what if it doesn’t?” When I have a flare I need to tell myself that I have no idea how it will turn out and validate that this uncertainty carries a wide range of feelings. To each What If that arises, I reply, “yeah, I have no idea yet.” This is soothing to the pain fuelled part of me. “I have no idea.” Breathe. “There is no way to know.” Feel the feelings this evokes and breathe.
  2. I make a plan. For example: When faced with “What if it stays this bad?” instead of telling myself that I will be fine, I plan. “I will rest for two days and then call my specialist if I haven’t improved,” or “I will ask a friend to alert 3 people that I will be needing extra help.” I jot the plan down, if I am able, and then have more capacity to stay present in my yoga practice, knowing the answer to The What If. This is really affirming to me when I am stuck in a loop as it validates that an ongoing flare may need help, planning, or intervention. 

How about you, friends? Do you have The What Ifs when you have a pain condition flare? What has been useful to you in managing the thought loops and in getting through the day? 

What do you need to hear when your chronic illness flares? (Spoonie Yoga Day 7)

Many chronic illnesses leave us in relentless pain while many are episodic, flaring up at times and lowering at others. Sometimes the flares follow a pattern that allow us to anticipate them but often they do not and we end up with symptoms ablaze and no solid idea as to what went wrong. When we are stuck in the throws of this, what can anyone say or do that can possibly help? Here are 6 things that are helpful for me. Please feel free to leave a comment with what is helpful for you to hear when your illness/es intensify. 

  1. It’s not your fault. We can worry ourselves sick trying to figure out what we could have done to avoid the torture we’re experiencing so that we can avoid it in the future but the sorry state of things is often that the illness has a pattern that we do not control. If you are flaring I will offer this: it is not your fault you are flaring. You do not have to carry the burden of living through the flare and figuring out the flare. 
  2. You do not deserve this. There are many messages we encounter that stress we create in our realities. These messages can come back to haunt us during a flare. If you are flaring, allow me to say: you do not deserve this. It is just what is happening. 
  3. You work so hard! Similar to not deserving a flare, I find recognition as to how hard I work to heal and live with my illness to be really affirming. If you are flaring, please know: you work harder than many can imagine to live with your condition, this work is very hard and real. 
  4. What do you need? We know that folks with chronic illnesses get much unsolicited advice. Advice that can add to a sense that we ought to do more or do differently. Having lived with our illnesses, we are experts on our needs and often need help to meet them during a flare. Some lemon water, a bath run, or some ice might help me immensely but I might be too tired and pain filled to know how to initiate a conversation about it. If you are flaring: I see your expertise in your own condition. 
  5. Tell me about what’s happening. When I’m flaring, pain is my day. Pain is so isolating. We are the only ones in side our experiences and it can be profoundly lonely. When someone takes that time to ask about my experience, I can feel less alone in the symptoms. If you are flaring:  And if it is of use to you, I invite you to share what is happening for you today (comment sections can be wonderful things). 
  6. That really sucks! There are, of course, many variations on this theme. Basically, the point is that rather than trying to help a person embrace what they are going through or be grateful for it, some empathetic exclamations can go a long way. If you are flaring today: that sucks! I’m sorry. It bites. And it should bloody well stop already. 

One of the challenging things about having a daily yoga practice and a chronic illness is the way yoga asks us to be present with what is happening in this moment. When I am flaring, I want to escape my current embodiment. While I support some doses of escapism, the attempts to outrun the feelings a flare can evoke are exhausting. Knowing what can subtly shift our experience from isolation and self blame to one of community and support can equip us with the capacity to be in our own experience as it is. If you are flaring, this is my wish for you. And that your flare ends. That too.

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May you know that you do not deserve the pain you are in.

“I’m too f**ked up to meditate:” How mental health struggles challenge a regular practice (Spoonie Yoga Day 6)

I’m sure more than a few readers struggle with mental health. Mental health struggles are hard on so many levels and when you’ve got competing chronic illnesses, depression and anxiety are often just icing on the crap cake. You are sick, tired, in pain… and then you’re sick tired and in pain but also having a panic attack. It makes sense, of course. There is nothing like always being sick and struggling with the most basic things, like breathing, to set off anxiety even for folks who didn’t start out with anxiety issues.

So folks who deal with intense anxiety and panic, you know how it can leave you feeling spectacularly fucked up? When I feel spectacularly fucked up I often then wind up in a loop where I feel too messed up to do any of the things that help. It’s really alienating and it goes something like this:

  • Just cried until I threw up? I’m too fucked up to do breathing exercises.
  • Just spent time hyperventilating with a panic attack? I’m too much of a wreak for a yoga practice.

Maybe it’s shame from all the cultural crap the tells we have to have tidy and controllable emotions. Maybe it’s the notion that we have to earn what nourishes us by being self-actualized and calm. Maybe moving from anxiety and panic to a place of stillness just feels like too far a bridge to cross when you’re depleted from experiencing all the things.

It’s amazing how much I don’t have the answers, but I’ll offer this…

  • You can be a sobbing, panicking heap and deserve to do what nurtures you.

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    How do we begin when we’ve run out?
  • You do not have to be calm and grateful in order to have a spiritual practice.
  • You can have a messy practice.

You can meditate and feel anxious. You might be a touch less anxious at the end, or at least a tiny bit more in touch with yourself. That’s completely valid.

You can ugly cry while in restorative poses. You don’t have to finish with the warm glow of serenity folks in the yoga videos always seem to have. You can just finish. And maybe you’ll feel a little less alienated at the end.

I started this 12 Day Spoonie Yoga series well over 12 Days ago but needed to take a break in order to focus on some job interview prep and househunting that was taking everything I had (and then some). I grappled with not doing it “right.” But so much of life with a chronic illness is based around showing up as we can, in the way we can… so I suppose it’s completely fitting that a 12 Day Chronic Yogi happens in two sets.

 

The Challenge of Not Competing with Anyone, Even Our Former (Well) Selves (Spoonie Yoga Day 5)

A year or so after getting sick, I tried to do a program that involved going to yoga classes everyday for 40 days. Other people in the group were (reasonably) struggling with time, work, and childcare. My struggle was different. Too much movement doesn’t just require a rest day for me, it can induce a flare that lasts for months. I quickly found out that the studio did not offer enough classes that were my “speed,” but that ceased to matter too much because my experimentation early on with what I could do caused a pain fall-out that required me to all but leave the larger program.

Let me just say, this sucks. Trying to take care of myself and commit to something for my spiritual and all-around growth and well-being causing a health crash was really discouraging and I had a really tricky time articulating why. At first I thought I was jealous, so many in my cohort could choose to push themselves to “stick to it.” I tried discuss in this with program leaders who encouraged me not to compare myself with others, stressed that I didn’t need to compete with anyone, and that my only work was to grow in what I could do.

I then realized that I had misread my reaction, I wasn’t jealous of them, I was grieving the loss of my non-spoonie self who could make a commitment to a daily practice and choose to do more than I had done the day before, the week before, or the month before. Spoonie life takes this away and that’s rough. We live in such a competition based dominant culture that it can feel like a huge change just to not compete with others and, instead, to claim that the only person we need to compete with is ourselves. But here’s the thing, we don’t need to compete with ourselves. We don’t need to compete at all.

We only need to be awake to our own lives. I didn’t have to “go every day” to live up to my commitment. I needed to tune into my body and breath everyday and make space to unplug from technology and find quiet. That is a commitment I can make while living chronically. From this quiet space I am better able to assess what supports restoration in and growth for my body and spirit and ensure I sustainably build a practice from a place that is not based in competition but in connection to what is. 

So on this Day 5 of Spoonie Yoga challenge, I invite you to do just that, to tune into your body and self and what is actually happening. Can you, for two minutes, put Spacedown your computer (or phone or pad) and begin to focus on a deep inhale and longer exhale. Can you focus on a simple dozen long inhales and longer exhales. And from this place of connection to your breath, you can ask yourself, what asana does my body need right now, as it is, to support yoga that I can do right now, as I am? It is not a race. It is not about where your body was last week or where you hope it will be tomorrow. It is not about being better than you were before. It is about you being present with what is actually happening. You do not have to love what is. You do not have to be grateful for or positive about it.  The question can just be– where are possibilities for compassion for myself in that place?

What is a kind way to hold your body in its pain? What poses will support you in a practice with the balance issues you have? How can your body, with its nausea, find release? Regardless, I invite you to spend a little time, even just a few minutes, breathing deeply in 2 or 3 poses as an active practice of compassion for your body as it actually is. 

Feeling safe enough to move when you’ve got PTSD and trauma stored in your body (Spoonie Yoga Day 3)

CW: Discussion of having abuse triggers, no description of abuse.

I remember going to yoga for the first time at 18 and doing my first cat’s stretch. The rolling of my hips, while staying connected to my breath, made me panic. A history of childhood abuse made this connection to my body both terrifying and a thing I wanted most desperately. As I started to attend yoga regularly, I would frequently start to sob mid-pose because of what the movement unlocked in my body. 

And these were the good days. The days I could face unlocking the trauma stored in my body and feeling the feelings it evoked. I would also go through months at a time when I would try to make it to class everyday and not manage to. Everyday. It’s not that this has entirely ceased to be an issue but it happens far less often. Some of the reason for this is that through years of movement (and also a hell of a lot of therapy), I am not breaking open new trauma in my body, I am facing something much more familiar. But there are still really hard days and there are concrete things that have helped. I’ve got a few of them outlined here:

  • Having a home yoga routine. Sometimes being in a public place *and* moving my body is just too damn much. I subscribe to Gaia.com because there are thousands of routines and I like that I can enter preferred styles, lengths of time, or a preferred teacher and just select a routine based on those criteria. However, if additional $7 a month is not available to you (so many chronic folks have such tight access to funds), you tube is full of free and simple yoga routines. Once you find a teacher you like it can help to narrow the scope to be less overwhelming. 
  • Find a setting that will tell you that your practice is just between you and your
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    What will give you the sense of being your own safe island? 

    body. Do you need to feel entirely alone? Is there a room you can go into with a door that locks? Can you barricade the room with a chair against the door? This is not a comment on your spouse or room mates, it is a way to speak to the survivour part of your brain and tell it “you are safe to move and no one can touch you.” It is a way to tell your triggers “you are the only one here and you can move just for you.” 

  • Skip the poses that don’t feel okay for you. Once you have been doing yoga for a long time, you will have the skills to adapt your practice. But in the early stages, if moving a certain way is going to send you into a crisis, come back to sitting in a cross-legged position, to child’s pose, or to shavasana and stay connected to your breath until the next pose is happening (you can do this is classes too). I had a yoga teacher once who told me that the practice begins when you stay centred on breathing in and breathing out and it ends when you hold your breath. Know that taking some time just to stay centred on your breath is a valuable way to continue your practice and honour yourself and what your body is releasing. 
  • Get support. I find it invaluable to have people I check in with before a practice and/or to check in when it’s completed. So much of the abuse I faced was isolating and just knowing that other people might have fears that make them avoid a sense of connection to their bodies and breath is helpful part of breaking this sense of isolation in my current struggles. I run a Yoga and Meditation Accountability Group on FB. Please feel free to request to join and I’ll add you to this tiny community of folks supporting each other in taking care of ourselves.

If you are doing a practice today, my wish for you is a restored connection to your body and sense of self. If you are struggling to practice today, my wish for you is that you find a way into a space where you can feel safe enough to move. 

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Let’s act as sanctuary for each other