“If You Haven’t Got Your Health, You Haven’t Got Anything:” Chronic Illness and the Need to Recognize Intrinsic Value

“If you haven’t got your health, you haven’t got anything.” I encounter the phrase in all sorts of places–TV shows, vitamin adds, friend’s comments. Though seldom the intention, it can be a pretty crappy message for those of us who are ill and do not have our health, that we have nothing. 

It’s not the only place we encounter this message, of course. Dominant Western culture routinely places numerical value on human lives from what we might cost to what we might produce. We are acculturated into seeing our value in terms of things we do and our accomplishments. I was no exception. While I was doing my PhD, I was also publishing as much as I could, applying for future grants, and presenting at conferences. It didn’t seem like measuring my worth to me at the time, because it wasn’t particularly financially lucrative. I was making a contribution to my field, I told myself. Furthering an analysis of social justice in education. This was worthwhile work, I told myself, and I believe that it was. But I had a few things mixed up. I didn’t realize until I couldn’t do any of it for a long time that seeing the work as worthwhile had become intertwined with how I saw my own value. And I already was worthwhile, whether or not I made contributions to the literature. 

That’s the thing about chronic illness, it really brings us face to face with how we’ve drawn our sense of how we value ourselves… usually because we don’t have access to it in the same way anymore. This is really, really rough. Most folks with chronic illness are in torture levels of pain most, if not all, of the time. If we drew our sense of being worthwhile from work, we generally can’t work in the way we did. If we drew it from our independence, we may need help with everyday self-care and maintenance. It challenges every source we may draw from. 

One of the really hard ones for me was my active way of life. I loved cycling commuting, I loved going hiking in the woods. I loved swimming in fresh water. Connection to nature is so nourishing for me and living with least harm to the planet, a core value. I can’t live in the way that I used to. I need a car to not be housebound. I’m writing about these losses just to say that I get it, the grieving is real. 

I’ve tried to re-evaluate the sources I draw from. I’ve made lists. Without my health I have:

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Always having intrinsic worth.
  • Love and connection to my wife, our dog, and our cat
  • A sense of awe in nature
  • Compassion and care for my friends
  • A sense of silliness, a cultivation of goofiness 

While these can help me make a conscious move away from accomplishment oriented worth and toward valuing relationships, it did not go far enough. What about the days that illness makes me cranky and feeling disconnected? When I am stuck in bed? I am am working on drawing a sense of being complete in my breath. In the act of breathing. I am having more days where I attempt to sip tea slowly and know that in those moments, I’m already enough. 

If you are grieving losses, I want to offer this: we are more than how we draw our sense of belonging, our sense of value. You are not your work, your value is not your work. You are always, already worthwhile. Without your health, you have something. You have intrinsic value. 

 

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Having value in the act of breathing.

 

Chronic Healers: An Alternate Way to Understand Healing Practitioners with Chronic Illnesses


At 18, I was having one of my common chronic migraines, and asked a friend if he had painkillers.
He gave them to me but also offered to spend time doing Polarity Therapy, an energy healing modality he had been studying, to see if this could help as well. It was amazing. Not only did my migraine ease, but I felt calm and grounded for days (which was very rare for me at the time). I began to seek out different healing arts, attending workshops and sessions which eventually led to me becoming a Reiki Master. 

I’ve recently started a Reiki practice,  Oceana Healing Arts. I have wanted to do this for a very, very long time. Why did I hold back? Among other things, I was struggling against a particular kind of internalized ableism: the idea that healers could not be healers until they were “healthy.” 

I didn’t make this crap up. There’s a old adage, “physician heal thyself,” the ableist interpretations of which have wound their way through Western culture and were getting in the way of my ability to  believe that I could have a healing practice. The popular mythology claims that a “sick” person needs to heal themselves first or they cannot, or should not, do healing work with other people. I read many Reiki books by Western practitioners who urge healing professionals to take time off if they have a persistent condition and treat it first before offering sessions for other people. While there is no problem with deciding to devote your energy to self-healing, the imperative concerns me. Where would this leave those with chronic conditions? Some of us would not practice anymore and this is not necessary. 

Over the decades that I have been doing healing work with friends and acquaintances, I have seen some pretty freaking cool things happen:

  • A friend on dialysis was able to paint again Reiki 3because the calcium deposits in his writs cleared up overnight after we had a session together;
  • A woman had nurses double-checking the date of her eye surgery because her recovery was so rapid with our daily sessions that it didn’t seem possible her surgery had been as recent as it was;
  • Someone else was gradually able to move panic attacks from a central to a background part of their life because of the healing work we did together.

The old adage, with it’s associations, needed to go. But it wasn’t enough for me just to dislike this prevalent model, I needed a different one to work with. 

The idea that people with chronic illnesses shouldn’t be healers, was based on two ideas that I don’t want to carry in my body or into my  healing practice:

  1. The idea that chronic illness is a flaw, that chronic illness must stem from the “sick” person doing something wrong (something “healthy” people are doing right);
  2. The idea that healing is scarce, that if I need healing it will take away from yours and what I offer you will be diminished by my chronic condition.

In this model, illness just makes for more illness. No thank you!

What if healing capacity doesn’t need to be diminished by need but can instead be expanded with practice? What if healing can make for more healing rather than illness necessitating more illness? I have chronic Lyme for a variety of reasons (including gendered medical neglect). That I struggle with my illness is not a failure of mine as a healer, it is because the condition itself is complicated and complicated things need attention, not shame. Having this illness, I devote a great deal of time and energy to cultivating healing in my life. If I adopt a model in which healing can build more healing, my pain does not diminish my efficacy. Instead, my focus on healing builds a greater capacity for healing work with others. 

This model lends itself to building community. Rather than framing “healthy” people as the only ones who can to heal and framing those with illnesses  solely as people in need, we afford room to for people with chronic illnesses to be Chronic Healers– a most powerful form of badassery. I have now turned one room in my new house into a Reiki studio (it’s a wonderfully restorative space). I am building this Reiki practice as a Chronic Healer. 

I invite you to visit the website or like the FB page and share in this Chronic Healing together! 

https://oceanahealingarts.wixsite.com/website

https://www.facebook.com/Oceana-Healing-Arts-1723248291271507/

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“I had a wonderful Reiki treatment. I felt completely safe as her warm, gentle hands encouraged energy to move more freely from my head down through my feet. Unlike other therapies, I came away feeling lighter and more whole, and was energized and pain-free throughout the day. Such an optimistic glimpse into future healing.” L.T.

 

May you be free from shame.

Recently a friend of mine shouted “health is not a meritocracy!” I was at once amazed by how tangibly I felt relief from shame for not having done “well enough” at solving my health issues. My illnesses are not a result of a failure to have lived well and earned merit by eating, exercising, sleeping, or even forgiving as I “should.” Working against this shame is ongoing as is the work to grapple with not feeling as if I am failing something for being fat or living on the edge of financial capacity or continuing to keep unhealthy relationships out of my life (thereby not ‘forgiving’ those who are unsafe). This shame has a tougher weight than any that curves around my centre or thighs. This is my wish for you: may you divest the weight of shame. 

  • May you feel free to re-examine your past without shame for not having “let it go” and without believing that you are not “living in the moment” by needing to grieve and go back to heal old wounds.
  • May you feel no shame in keeping alert to the dangers abusive people may pose for your life and the lives of those you care for. Whether this involves not speaking to your mother or keeping a former co-parent out of a child’s life, may you feel free to grow spiritually and emotionally without shame regarding not having forgiven or forgotten.
  • May you feel no shame for chronic pain and fatigue. No one is equipped to prescribe the meaning of your illness, its cause or its “cure.” May you divest from the idea that health is a meritocracy that you are failing–be it through pizza consumption or the idea that if you loved yourself better you would not be sick.
  • May you feel free to be fat without trying to be otherwise. You do not need to be a “worthy” fat person by trying to be thin. Without a diet or exercise plan, you are entitled to feel  beautiful, sexy, and loveable in your body exactly as it looks at this moment.
  • May you feel no shame if you are poor. Your relationship to poverty is part of a larger system of inequities rather than the result of personal shortcomings or failure to successfully become an adult. You do not need to feel as if you have not actualized or manifested abundance if you are poor. It may be that you didn’t have middle-class parents to help you out as a young adult or that health or illness get in the way of making money in capitalist culture. You capital is not your worth.

There are so many more ways that we  are shamed in our bodies and selves. How are you divesting of shame? What has been powerful in your life? 

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You have worth today

No matter how you feel about family and about holidays, you have worth today. If you are full of sadness or grief, it is also full of the worth that is you. This is true today, no matter what. You have worth and you are welcome here. This post is two brief letters. The first is for those who are 15698252_1800713106857522_7345210611381440102_nare struggling today. The second is to those who love the holidays and offers  tools to reduce the alienation that can be caused by the expectation that all are celebrating in this moment. 

Dear everyone who is struggling, 

You are not doing anothing wrong. I don’t celebrate xmas, not in the religious or the secular way. If you  don’t celebrate xmas either, for whatever reason, remember that this is fine. It’s not a sign that you failed to mature  or heal in the ‘right’ way or anything else. You don’t have to reframe it or work through it if you don’t want to. You don’t have to like carols. You don’t have to like xmas lights. There’s nothing wrong with that. You can like other things, I promise. 

Love, Anika

Dear everyone who is having a good time at this time of year,

Please remember that not everyone is sharing your good time and can be further alienated if folks assume they are or should be celebrating. Here are a 2 things you can do to not add to people’s alienation:

1. Know that some people’s family’s are horrifying. If you want to post something nice about family, please post it about your family rather that posting a meme about what families are. 
2. Acknowledge that some folks are having a crap time. Rather than trying to help them work through it and celebrate, just watch a movie together or go for a bike ride or eat some potato chips or something.
 

Folks might be grieving, feeling left out, not giving a shit, or having flashbacks. Let’s make room for people to be where are how they actually are and not have to pretend to make things comfortable for folks who are having a good time.

Love,
Anika


To all of us, let’s strive to make spaces for us to fan the bonfires with love and rage until is burns through the lies and honours how we have survived, and survived together. 

 

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“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?”
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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. 

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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.