We’re Forked: Navigating Spoon-Disparity in Long-Term Relationships

We’re Forked: Navigating Spoon-Disparity in Long-Term Relationships

Image description: Kate’s incredibly stylish orange cane, leaning against white drawers with silver handles, on a wooden floor. 

This is a Patreon reward post for Kate, and was available to patrons last week. Patreon supporters at the $10/month level get a self-care post on the topic of their choice during their birthday month. These supporters make my work possible! Especially as I head into my Master of Narrative Therapy and Community Work program, my patrons ensure that I can keep producing resources and self-care content. (And wow, there are some really great resources in production! Check back tomorrow for a post about that!)

Kate and I have known each other for a few years, and got to know each other while we were both going through some challenging times (though we didn’t actually meet in person until quite a bit later, and still aren’t able to spend as much time together as either of us might like!)

Kate has been one of my most outspoken supporters, and I appreciate how she is always willing to leap in with an offer of help or a suggested solution.

Her birthday is in January, and her topic is, “maintaining intimate relationships and partnerships with a chronic illness or chronic pain.”

I struggled with writing this post because I am experiencing my own spoon shortage. I’m in the middle of a depressive episode, have been sick for the last two months, and my fibromyalgia pain has been spiking. All of these spoon-hoarding gremlins are impacting my own relationships, challenging my sense of who I am and how I navigate the world, and putting gloom-coloured glasses on my view of the future. When I write about self-care for folks who are struggling, it’s easier when I can write about a struggle I am not currently experiencing. It’s easier if I can yell back into the labyrinth from the safety of the outside. Easier, but not always better. It is a myth that the best insights come from people who have “figured it all out” – I believe the opposite is often true. When we are in the thick of it is when we have the most relevant and meaningful insider information. Our struggle is not a barrier to our ability to help each other – it is the fuel that allows us to help each other. This is one of the key principles of narrative therapy, and as much as it challenges me, I am trying to bring it into my own life. Can I write something worthwhile from the heart of the struggle? Yes. Well, I think so. Let’s find out.

What Kate asked about was maintaining intimate relationships while navigating chronic illness or pain. In relationships where one person experiences chronic issues and another doesn’t, those issues can create a significant disparity in ability and access to internal resources. (And in relationships where multiple people are experiencing chronic issues, the pressure resulting from reduced access to resources can grow exponentially.)

Being in the position of having (or perceiving that we have) less to offer often triggers shame, fear, and stress. In my own relationships, I worry that I’m not worth it, that my partners will grow tired of me. I worry that I’m “too much.” I have heard the same worry from my clients.

This anxiety is so natural, and so understandable. Our society does not have readily accessible narratives that include robust “economies of care.” Our most common narrative has to do with “pulling our own weight” in a relationship, and our definitions of balanced relationships rely so heavily on ideas of equality rather than justice. Split the bills 50/50. Take turns washing the dishes. You cook, I’ll clean. My turn/your turn for the laundry, the diapers, the groceries.

And it becomes more complicated when we consider the intangible labour of emotional support and caregiving, which is disproportionately assumed to be the role of women in relationships with men, and, since women are also often the ones experiencing chronic pain or illness, this can compound into a messy and unjust situation pretty quickly. (To back up these claims, check out the links at the end of this post.)

Thankfully, both of these problems – the tit-for-tat approach, and the unjust division of emotional labour – are being challenged by writers, activists, and communities on the margins.

In Three Thoughts on Emotional Labour, Clementine Morrigan writes, “We can name, acknowledge, honour, perform, and yes, accept emotional labour, instead of simply backing away from it because we don’t want to be exploitative.”

This is so challenging for so many of us, because we do not want to exploit our friends, our partners, our communities. When we experience chronic illness or pain, the fear that we might slide into exploitation and “being a burden” becomes amplified. Morrigan suggests that we can ask three guiding questions about the emotional labour we are offering or accepting – Is it consensual? Is it valued? Is it reciprocated?

If we can answer yes to each – if we are discussing what we need and what we can offer, if we are valuing what we are offered and if our own offerings are valued, and if there is reciprocity – fantastic!

But what does reciprocity look like in situations where there is a disparity in access to resources?

Morrigan suggests that:

“It is important to acknowledge that some of us need more care than others. Some of us, due to trauma, disability, mental health stuff, poverty, or other reasons, may not be in a position to provide as much emotional labour as we need to receive. We may go through periods where are able to provide more emotional labour or we may always need more care than we are able to give. We may be able to reciprocate care in some ways and not others. This is totally okay. We need rich networks of emotional care, so that all of us can get the care we need without being depleted. We need communities that value and perform emotional labour—communities that come through for each other. Reciprocity is a commitment to building communities where all of us are cared for and no one is left behind; it is not a one for one exchange.”

It is not a one for one exchange.

This is so critical.

And it’s so hard to make space for this. It’s hard to see our worthiness and the value we bring to a relationship when what we offer has shifted from what we were able to offer before the chronic issue grew up within us and between us.

Not only that, but it’s often hard for our partners to recognize what we’re bringing to the relationship. Not because they don’t love and appreciate and support us, but because they are also caught within the web of accessible narratives and ableist norms.

In order to answer “yes” to Morrigan’s “is it valued?” question, we need to be able to look clearly at the work our partners, friends, and families are doing for us and acknowledge that work. And we need to be able to look clearly at our own work and speak openly about it, so that it can be valued. Neither side of this is easy.

Becoming aware of the skills and insider knowledges that we develop as we live our new pain-, disability-, or illness-enhanced lives can help with recognizing, articulating, and allowing people to value our new contributions.

In A Modest Proposal For A Fair Trade Emotional Labor Economy (Centered By Disabled, Femme of Color, Working Class/Poor Genius), Leah Lakshmi Piepzna-Samarasinha writes:

“Sick and disabled folks have many superpowers: one of them is that we often have highly developed skills around care. Many of us have received shitty, condescending, charity-based care or abusive or coercive care—whether it’s from medical staff or our friends and families. We’re also offered unsolicited medical advice every day of our lives, mostly coming from a place of discomfort with disability and wanting to “fix” us.

All of this has made us very sophisticated at negotiating care, including our understanding that both offering and receiving it is a choice. The idea of consent in care is a radical notion stemming from disabled community wisdom. Ableism mandates that disabled people are supposed to gratefully accept any care offered to “fix” us. It’s mind blowing for many people to run into the common concept in many sick and disabled communities, that disabled people get to decide for ourselves the kind of care we want and need, and say no to the rest. This choicefulness has juicy implications for everyone, including the abled.”

I love her wording here. The juicy implications of choicefulness! Imagine the possibilities of this.

And yet, even as I revel in this juicy and nourishing framework, I remember my own deep and ongoing struggle with the concept of pain, illness, and disability as invitation, as superpower, as self. This radical reorganization of labour within relationships does not come easily, and one of the reasons it’s so challenging is because our concepts of fairness are so influenced by one to one exchanges.

Piepzna-Samarasinha addresses this fear later in the essay, reminding us that, “Disabled people often run into the idea that we can never offer care, just receive it. However, we often talk about the idea that we can still offer care from what our bodies can do. If my disabled body can’t lift yours onto the toilet, it doesn’t mean I can’t care for you—it means I contribute from what my particular body can do. Maybe instead of doing physical care, I can research a medical provider, buy groceries for you, or listen to you vent when one of your dates was ableist.”

We forget that there is still care, still reciprocity available within our relationships even when our ability to perform the tasks we used to, or the tasks we wish we could, has shifted.

Learning how to navigate this shift is challenging.

Searching for resources to share in this post, I was discouraged by the sheer volume of academic research performed by normatively abled “experts” on the outcomes for relationships that include a disabled partner. Once again, the centre scrutinizing the margins. It creates such a disempowering framework.

I was also dismayed by the fact that “should I date a disabled person” was one of the suggested related searches. Gross! GROSS!!!!

These are the narratives, and the social framework, within which we try to navigate our relationships as pain/illness/disability-enhanced individuals.

We need more robust, inclusive, intersectional, and hopeful resources. Not hopeful in the “look on the bright side” gaslighting-via-silver-lining sense. Hopeful in the sense of possibility-generating, hope that, in Sara Ahmed’s words, “animates a struggle.” Hope that reminds us that there are narratives possible outside of the ableist norm, and that we can write those love stories within our own lives.

The parts of ourselves that do not fit tidily into the ableist ideal show up in our relationships in many ways. In order to write those inclusive love stories of any kind – platonic, romantic, familial, or parental – we need to recognize and learn to navigate all of it. Financial, social, emotional, physical, mental – very aspect of ourselves that requires tending and care.

Chronic illness/pain/disability impacts our financial lives – we are often less able to work within normative capitalist models. The 8-5 grind doesn’t work if you can’t manage a desk job for 9 hours a day, and many other jobs are also out of reach. This adds pressure to our partners and social supports. Money is a huge source of shame and fear for many of us, so learning how to talk about requiring financial support, how to shift the balance of contribution in a household – overwhelming! Be gentle with yourselves in these conversations.

I find this particularly challenging. More than almost any other way in which my chronic issues impact my relationships, the financial instability that has been introduced as a result of my no longer being able to work a full-time job feels humiliating and shameful. I am working hard to carve out a living for myself, to build my business in sustainable and anti-ableist ways, to do what has to be done to pay my share of the bills. But my partners still take up more than what feels “fair” in the financial realm, and it’s hard. For me, engaging with writers, activists, and advocates who are challenging capitalism and neoliberalism has been helpful. Recognizing that there are other economic models available has opened up some space for me to still see myself as a contributing member of my partnerships and society.

Chronic illness/pain/disability also impacts our social lives – getting out to see friends can become more challenging. Our partners can end up taking on more social caring work for us, being the ones we talk to when we aren’t getting out (or when we don’t feel safe to talk about our struggle with others).

The aggressive individualism of our current anglo-european culture means that we are often isolated, and this can be so discouraging. Again, I struggle with this personally and I don’t have easy answers.

And searching for resources on parenting with chronic pain, illness, or disability is similarly challenging and disheartening. Parenting with any kind of divergence from the ideal is difficult. The weight of judgement, assumption, erasure, hostility, and isolation is so real. Although more supportive and inclusive blog posts, research papers, and articles are being written, the perception of a weirdly-abled parent is still one of lack, inability, and pity.

We often want to provide everything our children needs, without outside help. That’s the expected ideal. The nuclear family is still the celebrated norm, and the ideal of a normatively abled, neurotypical, stay-at-home, biological parent is still the target to meet. We may recognize that “it takes a village” but we resist the idea that part of what that village offers may be physically chasing after the toddler, lifting the baby, doing homework with the teen, helping with the rent. Just like we need to expand our conception of emotional labour and economies of care within relationships, we need that same expansiveness and redefinition within our parenting relationships and roles.

Which is easy to say, and incredibly hard to do.

At Disability and Representation, Rachel Cohen-Rottenberg writes, “What so many able-bodied feminists don’t get is how profound an experience disability is. I’m not just talking about a profound physical experience. I’m talking about a profound social and political experience. I venture out and I feel like I’m in a separate world, divided from “normal” people by a thin but unmistakeable membrane. In my very friendly and diverse city, I look out and see people of different races and ethnicities walking together on the sidewalk, or shopping, or having lunch. But when I see disabled people, they are usually walking or rolling alone. And if they’re not alone, they’re with a support person or a family member. I rarely see wheelchair users chatting it up with people who walk on two legs. I rarely see cognitively or intellectually disabled people integrated into social settings with nondisabled people. I’m painfully aware of how many people are fine with me as long as I can keep up with their able-bodied standards, and much less fine with me when I actually need something.

So many of you really have no idea of how rampant the discrimination is. You have no idea that disabled women are routinely denied fertility treatments and can besterilized without their consent. You have no idea that disabled people are at very high risk of losing custody of their children. You have no idea that women with disabilities experience a much higher rate of domestic violence than nondisabled women or that the assault rate for adults with developmental disabilities is 4 to 10 times higher than for people without developmental disabilities. You have no idea that over 25% of people with disabilities live in poverty.”

So that fear of embracing a new normal, subverting the neoliberal individualist norm, creating new economies of care and radically altering our relationships to be just rather than equal… this doesn’t happen in a vacuum. We aren’t just subverting norms and creating new relationship methods – we are doing so, as parents, under the scrutiny of an ableist and highly punitive culture. We are conscious of the fact that our subversion of norms, which may be possible within adult relationships, may make our parenting relationships more precarious, more tenuous.

Access to external help is readily available to the professional upper class – nannies are a completely acceptable form of external help, and parents are not judged for needing a nanny when that need is created by long working hours. Needing help in order to be more productive? Sure thing. (You’ll still face judgement, of course. Can any parent do it “right,” really? Nope.)

But needing help because of pain, illness, or disability?

Yikes.

That is much less socially sanctioned, and there are far fewer narratives available that leave space for that choice to be aligned with a “good parent” identity.

And yet, many of us do parent while in pain, while ill, while disabled. And we are good parents. Just like we have valuable superpowers of caring that can be brought into our adult relationships, we have the same superpowers of caring to bring into our parenting roles. What we do may look different than the pop culture ideal. How we do it, when we do it, who helps us with it – that might all look different. And that’s scary. But the value it brings to our kids is immeasurable.

One of the invitations that chronic illness, pain, and disability extends is that it pulls the curtain back on how harmful the neoliberal ideology of rugged individualism really is, and asks, “is there another way?”

I’m not great at saying “yes” to that invitation, but I’m getting better at recognizing it when it shows up. I don’t need to have all the answers, because I have a community around me that is brilliant and incredibly generous.

So, when I was struggling with this post, I asked my best friend and one of my partners to help me.

H.P. Longstocking has been dealing with the long-term effects of two significant concussions, and in a moment of discouragement at my own inability to write this post, I asked if she could help me get started. What she sent touched on so much of what I wanted to write about, so eloquently, and I’m ending this post with her incredibly valuable contribution. She is a parent, a scholar, and an integral part of the social net that keeps me going. I think there’s hope in how she has responded to this.

She writes:

While I am no stranger to depression or anxiety, I had never experienced a chronic debilitating illness and I found that my self-care habits and techniques were no longer usually helpful or even always possible. Last summer I had several concussions. Because I had sustained so many as a child, these two accidents completely changed my life. Most of the summer I was not safe to drive or even walk as my second concussion happened when I tried to walk out of my bedroom and due to the concussion symptoms, I cracked my head into a wall. I could not look at screens, read, handle light or loud noises, and was told to stop having sex. All of my self-care habits were taken away.

I have always been an active person. Running and cycling have been my times of meditation and recalibration. Dancing brings me joy. Physical activity has been an integral part of my self-care since I was a small child. To have days, weeks, and months where walking short distances is the most physical activity I can safely manage, and some days not even that, has had a detrimental impact on my body and my emotional well-being.

I used to love to read. I devoured books and articles. I had just started my Masters and was supposed to be immersing myself in the scientific literature. I could not do any of that. I still struggle. Reading was my escape, my lifeline, my lifeblood, and I hoped, my livelihood. Now it causes me pain.

I was not prepared for the constant, chronic pain. Previously, I had headaches so rarely, I did not recognize them the few times a year I would experience one. Now, I have a hard time recognizing it because I am never without one. I find that I have my face screwed up in pain after someone reacts to me as if I am scowling at them. My coping mechanisms for the pain are to hyperfocus on something so I am unaware of most of the world around me. Unfortunately, this is usually my phone which in the long term makes it worse, but also as it gets worse, I have less self-control and ability to stop myself.

All of this has impacted my relationships. Without the ability to drive, I am often limited in who I can see and where I can go. Even without that, I am easily tired in social settings and my words begin to slur in mental exhaustion. I cannot handle loud spaces for very long, or if I do, I pay for it with days of recovery. I often feel isolated, alone, and incapable of taking care of myself, let alone being the partner, parent, and student I aspire to be.

But, I have adapted. Instead of reading, I listen to audiobooks. Instead of digesting dense theory or the latest studies, I listen to light narratives and fiction that has a plot so predicable that I can fall asleep and not miss much. I go for short walks instead of long bike rides.

My relationships have also changed.

It is hard to feel like you are not carrying your weight, especially in this neoliberal culture where people are valued according to how much productive and profitable output they can do. It is hard to be a partner with someone when you are more dependent and roommate than lover. It is hard not be able to see people, leave the house, focus on what someone is saying, or do what they are doing. It is so isolating and would be so much more so with poverty added as well. It hurts to see your kids do an impression of you which is just sleeping.

My friendships have changed. I am slowly learning to ask for help. To say no. To cancel plans last minute because it is not safe that day for me to go out. I cancel plans so often now that I am scared to make them. Much of my socialization now is online and sporadic. There is a price to pay for too much screen time. I am spending more time with people I do not have to hide my pain from. I do not have the resources to put up with mind games and people who suck energy. I have a few friends that make safe spaces for me to come and just nap around them so I won’t feel alone. My life is rich, even though my world and abilities have shrunk.

Self-care looks entirely different to me now. Instead of the sun on my face and the pounding of my feet on running paths, I sip tea wearing sunglasses. Instead of pushing through discomfort, I am learning to listen to it so that I do not make things worse. Instead of losing myself in the written word, I find comfort in story, sound and other sensory delights. Some of the people I spend time with have changed, and the ways I spend time with people have also. I do not know which symptoms will resolve and which I will have for the rest of my life, but while I grieve for friendships and opportunities lost, I am also grateful for the capacity to change and adapt, and trust that relationships worth holding onto can withstand the changes as well.

Further reading on emotional labour:

Holiday Self-Care Resource

Holiday Self-Care Resource

Image description – A screenshot of the front cover of the PDF. Orange text reads “Queerness and Holiday Self-Care: Planning, Coping, Recovering, and Grief” Smaller text reads “A Document Generated Following the December 2017 Possibilities Calgary Bi+ Discussion Group.” There is a decorative red line down the right side of the image.

“What holidays are we talking about?

All of them!

This conversation happened around the Winter Holidays – that stretch of time that includes Hanukkah, Kwanzaa, Saturnalia, Yule, Midwinter, Christmas, New Year’s, and Chinese New Year. But these strategies, suggestions, and situations are relevant to any holiday that includes social pressure to perform joyfulness, to spend time with extended social networks, and to perform a certain type of gender, orientation, or other identity. These pressures can be exacerbated by trauma, grief, or identity shifts. Other holidays that can be challenging in this way are birthdays, Valentine’s Day, the Spring Holidays, and any personally meaningful anniversary.

There can be shame attached to needing self-care around the holidays. These are “supposed” to be cheerful times, where we connect with our families and communities, give and receive gifts and support, remind ourselves of the goodness of humanity, feel loved and loving.

There is so much pressure to conform to these ideas of appropriate holiday cheer, and although we understand that the holidays can be challenging, it’s often difficult to extend compassion to ourselves when we are struggling. And it’s sometimes hard to ask other people to understand when we’re struggling, because they may be invested in having a “good holiday” that doesn’t have space for our struggle.
Depression spikes at the holidays, and we do not have robust “practices of anti-depression” (to borrow a term from Daria Kutuzova, whose work is linked in the resources section). These practices include things like mindfulness, self-care, self-compassion, creating and encouraging unique outcomes (meaning, outcomes that defy our internal expectation of despair and the external expectation of a certain performance of joy – unique outcomes are outcomes that allow us wholehearted, hopeful, and resilient stories without denying our struggle, pain, trauma, and fear). Other practices of anti-depression include creating inclusive spaces and a sense of belonging, and encouraging pleasure, fun, hope, anticipation, and resilience without pasting on a smile that hides our true feelings. This path is much more complicated and challenging, but also much more rewarding.”

Read the rest by downloading the PDF here.

The monthly Possibilities discussions are full of rich insights, knowledge-sharing, and collaboration from within our bisexual, pansexual, asexual, trans-inclusive community.

One of my goals is to create resources that grow out of these generous and creative conversations, so that the work we do in those moments can extend out to join larger conversations about queerness and self-care. One reason for this is because when we are struggling, we have valuable insider knowledge that can help other people who are also struggling – it’s not true that the only people with answers are the “experts” or the ones who have it all figured out. To the contrary – it is often those of us who are actively grappling with an issue who have more direct insight and knowledge to share. This doesn’t mean there isn’t a place for experts or guides, but part of what I hope to accomplish with my work is consistently and intentionally centering the voices of marginalized individuals and communities, and creating resources that honour hard-won knowledge and skills.

In an effort to share these moments of community-generated wisdom from the Possibilities discussions, I’ll be creating a resource most months that documents and shares our collective insights. Anonymity, or naming, is at each participant’s discretion, and at the beginning of the discussion we talk about why I’m taking notes, what I’m planning to do with them, and how people can access the document before it goes public. Any participants who want to look over the document before it’s made public have that opportunity, and there’s a second check-in at the end of the discussion to make sure everyone is aware of what might be shared and has a chance to opt in or out. Confidentiality within supportive community spaces is so critical, and these documents will not contain identifying details (unless participants want to be named or identified).

This document is meant to extend the conversation and also to invite further conversation. Please email me at sostarselfcare@gmail.com if you have any questions, or would like to add to this discussion.

This document was created following our December 19, 2017 meeting, and is meant to be a resource for the queer community that validates the challenges of holiday self-care as a queer person. There are a ton of coping strategies, resources, validations, and suggestions in here.

I’ll be creating a document like this for most of the future Possibilities discussions, so you can look forward to Winter Self-Care (Seasonal Affective Disorder, dealing with the cold, and winter for weary queers) coming up next month!

Queerness and Physical Self-Care resource

Queerness and Physical Self-Care resource

Image description – A screenshot of the front cover of the PDF. Blue text reads “Queerness and Physical Self-Care: Gyms, Team Sports, and Gender.” Smaller text reads “A Document Generated Following the November 2017 Possibilities Calgary Bi+ Discussion Group.” There is a decorative orange line down the right side of the image.

The monthly Possibilities discussions are full of rich insights, knowledge-sharing, and collaboration from within our bisexual, pansexual, asexual, trans-inclusive community.

One of my goals is to create resources that grow out of these generous and creative conversations, so that the work we do in those moments can extend out to join larger conversations about queerness and self-care. One reason for this is because when we are struggling, we have valuable insider knowledge that can help other people who are also struggling – it’s not true that the only people with answers are the “experts” or the ones who have it all figured out. To the contrary – it is often those of us who are actively grappling with an issue who have more direct insight and knowledge to share. This doesn’t mean there isn’t a place for experts or guides, but part of what I hope to accomplish with my work is consistently and intentionally centering the voices of marginalized individuals and communities, and creating resources that honour hard-won knowledge and skills.

In an effort to share these moments of community-generated wisdom from the Possibilities discussions, I’ll be creating a resource most months that documents and shares our collective insights. Anonymity, or naming, is at each participant’s discretion, and at the beginning of the discussion we talk about why I’m taking notes, what I’m planning to do with them, and how people can access the document before it goes public. Any participants who want to look over the document before it’s made public have that opportunity, and there’s a second check-in at the end of the discussion to make sure everyone is aware of what might be shared and has a chance to opt in or out. Confidentiality within supportive community spaces is so critical, and these documents will not contain identifying details (unless participants want to be named or identified).

This document is meant to extend the conversation and also to invite further conversation. Please email me at sostarselfcare@gmail.com if you have any questions, or would like to add to this discussion.

This document was created following our November 21, 2017 meeting, and is meant to be a resource for the queer community that validates the challenges of physical self-care as a queer person, and offers potential ways forward.

The Key Points

• It can be difficult to access or maintain access to gyms and other fitness-focused spaces because of expectations of gender identity and sexuality, particularly expectations of hypermasculinity and heterosexuality.
• In spaces that are not explicitly queer-inclusive, performing an acceptable identity can keep us safe, but the emotional costs can be high.
• Solidarity – both within the community (going together to a space), and from allies (working to create safer spaces) – is one potential way forward.
• We have made significant progress as a society, but there is a lot more work to be done.
• Self-care is a complex and interconnected process – physical self-care is not distinct from emotional, mental, or social self-care. We need them all.

I’ll be creating a document like this for most of the future Possibilities discussions, so you can look forward to Queerness and Holiday Self-Care coming up next month!

Download the PDF here.

December Self-Care Salon: Narratives of Self-Care

December Self-Care Salon: Narratives of Self-Care

Image description – The green leaves of a succulent with a pink flower. Text reads Self-Care Salon: Narratives of Self-Care. Dec 10 1:30 pm to 3:30 pm, Loft 112. RSVP today.

Welcome to the Self-Care Salon!

Each month, we’ll meet for tea and snacks and discussion – an opportunity to take a deep dive into a specific self-care topic, with space for your questions and insights.

Each self-care salon will include a short presentation by a community expert – someone who can speak from their own experience about a self-care related topic. “Expertise” in this context is a broad and inclusive word, not limited to folks with letters after their names or professional designations, and recognizing the expertise that we each gain over the course of our lives. If you’re interested in presenting, get in touch!

For our inaugural Self-Care Salon we’ll be talking about “narratives of self-care” –  what the common perception of self-care is, how it’s discussed in mainstream culture and in activist circles, how marginalized communities can practice self-care and what our stories of self-care include, and what narratives of self-care we’d like to see more often.

Following the presentation by Tiffany Sostar, we’ll have an hour for discussion, including any questions you have about the topic (or about other self-care topics), and then time to chat, network, and work on our self-care plans. Each month you’ll get a resource pack with worksheets, suggestions for further reading, and a self-care plan for you to fill out for the coming month.

These workshops are intended to be as accessible as possible. The space is wheelchair accessible (through the back door), with a separate space for folks who are experiencing sensory overwhelm to chill out, and gluten-free and vegan snack options.

The cost for the workshop is $50 or pay-what-you-want. Nobody will be turned away for financial reasons. The first two workshops will be offered at a discount, because the holiday season is often a time of financial strain even for those of us who are not dealing with economic insecurity. Tickets are available here.

Sustainable and ethical self-care is not possible without intentional and compassionate community care, and the Indigenous communities whose land we live on are often forgotten. These workshops take place on Treaty 7 land, and the traditional territories of the Blackfoot, Siksika, Piikuni, Kainai, Tsuutina, and Stoney Nakoda First Nations, including Chiniki, Bearspaw, and Wesley First Nation. This land is also home to Métis Nation of Alberta, Region 3.

10% of the proceeds from the December workshop will be given to the Awo Taan Healing Lodge.

#stickfiguresunday: The Path(s)

#stickfiguresunday: The Path(s)

Image description: A stick figure stands on a road labeled The Path. Small paths lead away, labeled Why?, Is there another way?, What do I want for my life?, Who drew this map?, Where does my heart want to go? In the bottom right is a small Tiffany Sostar logo and a link to www.tiffanysostar.com

The inspiration for today’s #stickfiguresunday came from a good friend sharing their life-changing experience of realizing that further grad school would not actually get them where they wanted to be, and that there were other paths to their goals that felt better, easier, and more wholehearted.

More grad school had seemed like the best, maybe even the only, path towards their goals. But when they started questioning what they wanted, why they wanted it, and how to get it, they realized that grad school was not only not the only answer – it wasn’t even the best answer.

In that same conversation, we talked about why I had gotten married. I was on The Path – date, fall in love, get married. What I wanted was to move out of my parents’ home, experience freedom and independence, and feel capable and supported. Marriage seemed like the best, and at the time only, option. I loved him, we had been dating for quite a while, it was the logical next step. But if I had been able to ask myself some of these questions with compassion and curiousity, I could have found other paths toward my goals – paths that may have ended up in less pain and heartbreak for myself and my ex-husband.

It doesn’t help to assign blame to past selves who didn’t know that questions were possible – we make the best choices that we can with the resources and information we have available.

But it is helpful to invite ourselves to question the paths we’re on now.

Why are we on this path?

If the answer is that the path is right for us, awesome! We can stay on it.

If not, then we can start exploring alternatives.

Is there another way to get what we need?

If the answer is yes, it can be worth exploring what those other paths might look like, and whether they feel like a better fit for us. This line of questioning is most helpful when we feel trapped or forced into a certain path. Exploring alternative options with creativity, compassion, and curiousity can help us feel more grounded in our agency and self-efficacy – if we explore the options and find that this path is, indeed, the best or only path that gets us to our goals, then we can make a choice to stay on the path. Rather than being passively pushed forward by inertia or external pressure, we can make choices about what we do with our time and energy.

This is important, because there are not always better options. Sometimes we are on a rocky path and it truly is the only path available. It can hurt to look that reality in the eye, but once we do, we can start making choices about how we move forward on the rocky path we’re walking. G. Willow Wilson said “There is not always a way out, but there is always a way forward,” and that motto informs so much of my personal philosophy. Questioning our path can help us find the way forward.

What do I want for my life?

Taking a more expansive view can help. We’re on this path – towards marriage, towards grad school, towards a career in the trades, towards a big move or a friend group or a hobby or a habit or whatever else – and this path is not the only one that we’re on. We live multi-storied lives, meaning that our lives are made up of a huge number of events, experiences, thoughts, beliefs, and situations that create the stories we tell and are told about ourselves. There are many paths we are walking simultaneously. What do want for our lives? What is the bigger picture, and how does this path fit into it?

Who drew this map?

Why did I believe that marriage was the only way I could successfully move out of my parents’ house? To my older self, that is very clearly a false belief. But there was Life Map that I was trying to follow, and marriage was the next stop. I wasn’t navigating from a place of self-awareness, compassion, and intention. And that’s okay! We all have maps that were drawn for us by our society, our families of origin, our communities, or our histories. Those maps are not bad or wrong. But it’s worth examining who drew the map we’re following, and making a choice about whether we want to keep using it.

Where does my heart want to go?

What makes me happy?

What helps me feel whole?

What daydreams or imaginary selves keep tugging at me?

It’s worth paying attention to those gut-and-heart knowledges, even if they seem to contradict or challenge what we know with our rational minds.

So, what path(s) are you on?

How did you get there, and do you want to stay there, and where do they lead?

Let yourself ask the questions gently, compassionately, and with as much curiousity as you can muster.

This process can feel overwhelming and scary – if we question our path, does that mean we’ll have to abandon everything we love? Does it mean we’ll end up ostracized, alone, and broke? Does it mean we’ll realize we have no choices? (The answer to all of those is “no” but I totally understand the fear!)

If nothing else, start looking for the small question marks that pop up. When you start asking yourself about your path, as my friend did about grad school, let the knowledge unfold. What do you want? It’s okay to ask. And you might love the answer!

World Mental Health Day reshare and reflection

World Mental Health Day reshare and reflection

Image description – Autumn leaves and berries on nearly bare twigs against a grey sky. Text reads #TenDaysOfGrey #Mental Health. There is a small Tiffany Sostar logo in the top right.

Content warning for discussion of depression, anxiety, self-harm, suicidality.

Today is World Mental Health Day. This is my final post for Bryan McLean’s #TenDaysOfGrey mental health awareness project. You can read my interview with Bryan here. Rather than writing something new for today, I’m sharing a post I wrote four years ago that detailed my mental health journey up to that point. The reason I’m sharing it at the end of the Ten Days of Grey is because when I wrote this post I was in the grey. I am in the colour now, and I appreciate that.

I wrote the post shared here in 2013. Now I am 36, it’s four years later and many things have changed and many things have stayed the same. I am thankful for my 32 year old self writing this. I am thankful for my 28 year old self making it through, for all those younger selves who made it through. I have spent so many years in the grey.

At 36, I am not depressed. (I am often anxious, I am in the middle of a three-months-and-counting fibro flare, and I am experiencing regular existential dread over the state of the world, but miraculously, I am not depressed. Wow!)

It is sort of amazing to reflect on that, because there is a lot going on in my life that would is difficult, stressful, and overwhelming. I am thankful for the resilience I have developed, and I am also conscious of the truth that these sorts of things are not always “overcomeable” and these monsters will visit again. I’ll make them tea, cry with them, and continue surviving. I am thankful for that confidence.

I am also amazed at how strategies shift. When I wrote this original post, I had a few coping skills that I leaned on daily – my extensive lip balm collection is a testament to that. I used lip balm application as an alternative behaviour to self-harming, and it was life-saving for me. But these days, I have only even felt the urge to self-harm once or twice in the last couple years, and I only use lip balm when my lips are chapped. Self-care is such a responsive process – we are always responding, and the act of self-care is an act of presence and awareness. It becomes habitual, but it can never be only habitual. I love (and hate) that iterative, never-ending process. (I also really miss my Patchwork writers! If I ran another six-week poetry writing course, would you be interested? Let me know!)

Here is my 2013 post, edited to remove some ableism (we are always learning!) and to update links.

I’m sitting in Vendome, one of my favourite cafès in Calgary. I just sent out the writing prompt to my Patchwork writers, posted it on the Facebook page, shared it on my personal Facebook, tweeted it, posted it on the Writing in the Margins blog. Most of the time I respond to writing prompts privately, in a longhand journal. If I share the writing later (which I rarely do, outside of workshops where I read my just-written work with the group), I type it up and polish it a bit.

But the prompt today is to write about mental health.

And I am a mental health advocate. So I am typing this response directly into my “add new post” screen, and I am going to hit “publish” when I’m finished. And then I’ll post a link to it on Facebook and on all of my Twitter accounts, and here’s why –

At 13, I went through my first serious depression. I did not know what was happening to me. (If you suspect that you may be going through a depression or other mental health concern, here is a free screening tool. It’s not perfect, and symptoms are not so cut-and-dried for many people – it is a place to start, but not a final word.)

Suddenly everything was awful. There was a pain in my body/brain/heart/soul. I cried a lot. I self-harmed. I scratched my neck and shoulders and hips and belly until I was cross-hatched, red and scabbing. I smashed my head into walls, sometimes until I was dizzy. I didn’t know who to talk to. The only person who knew I was self-harming, the only person I confided in, was my 9 year old sister. It was terrible for both of us, a weight far too heavy for her small shoulders (or my own).

Writing about this time, I feel my chest tighten and my breath shorten, the muscles in my neck knot up – these are the first physical manifestations of anxiety in my body and I am aware enough now, at 32, to recognize them for what they are. I take a deep breath, roll my shoulders, take a sip of water, continue.

In high school, at around 16 or 17, I went through a second (or perhaps just a worsening of my ongoing) depression. This was complicated by the arrival of Sadisty – a very angry, very vicious voice in my head. I do not seem to have a split or multiple personality disorder – Sadisty was just (“just”) my mind’s way of externalizing the intense self-loathing that I was experiencing. Though I feel a deep shame about what feels, to me, like one of the lowest points in my mental health journey, I am also amazed and grateful for whatever it was in me that did choose to externalize rather than internalize those feelings. Sadisty wanted me to die, and I had many moments of suicidality, but I didn’t want me to die. I put all of that negativity into Sadisty, to get it out of my own head, to make those nasty comments come in a voice that wasn’t my own.

I am lucky to have survived high school, to have survived Sadisty and that second/ongoing depression.

(Breathe again, breathe again.)

At 18, I started volunteering at the Calgary Humane Society. I adopted a dog, my soul mate. Tasha. She had separation anxiety and dog-dog aggression. She was anxious, fearful, aggressive. Helping her helped me. Things got better. Sadisty was gone, and she has never come back.

I got married, I got divorced.

My mental health stayed at a consistently low-grade level of self-loathing. Low self-esteem. An at-that-time undiagnosed anxiety disorder. The impact of early trauma, unacknowledged anxiety and low self-esteem on my sex drive led me to believe I was “sexually dysfunctional” (a whole other thing, related but tangential to this post).

(Breathe, breathe. Roll shoulders, stretch wrists, refill water. In my body right now – tightness, tension. Shame, anxiety, fear.)

After my divorce, I went through a third severe depression. Again, I was self-harming. Again, I was suicidal.

I was 28.

I was ashamed.

I felt foolish – this was supposed to be done, part of the horror of adolescence. How could it follow me into adulthood? How could it threaten to destroy the new life I was trying to build for myself? How could I?! Shame, anxiety, self-loathing – there was a toxic mix of emotions and beliefs at play. Fortunately, I was seeing a counsellor and had her support, and the support of my anchor partner. I had started seeing a counsellor when I was trying to get past the sexual dysfunction, and continued seeing her through my divorce and into the depression that followed it. I still see her, and will continue to do so. I recognize now that my neurodivergence is not something I will ever “overcome” – it is part of who I am. It has taught me invaluable lessons, and has helped me become the advocate that I am. At 32, I recognize the value that this neurodivergence has brought to my life.

But at 28, I climbed halfway over my 28th floor balcony, intending to make strawberry jam on the pavement below.

After that, my counsellor helped me come up with an emergency plan.

I made the painful call to my sister, my mom, my dad.

I said, “I am currently depressed. Sometimes I feel suicidal. I am calling to ask if you would be willing to be part of my emergency plan. What that would mean is that if I call and tell you that I am feeling suicidal, you will be available to come and be with me, or take me to the hospital if necessary.”

I had to euthanize Tasha.

My mom was hit by a truck, she almost died.

I experienced post-traumatic stress disorder. The depression got worse. The self-harming escalated.

My best friend stopped taking my calls. Months later, she told me that it had just gotten to be too much – there was something wrong every time we spoke.

Depression, anxiety, other mental health concerns… they can be like bombs, decimating at the point of impact, shrapnel flying everywhere. Relationships can be fundamentally altered or destroyed. Partnerships suffer. The ripple effects of a mental health issue can make the isolation and loneliness, the shame and fear and pain so much worse. Among the conversations that we do not have regarding mental health, this conversation about self-care for caregivers, and balancing the various and sometimes conflicting needs for support is both absent and necessary. It is possible to remain friends with a depressed person, but because we do not ever have this conversation, many people don’t know how.

I came out of that depression.

I became an activist.

I developed an amazing, diverse, wide-ranging social circle.

I learned new coping skills. I breathe more intentionally now. I pay attention to tension in my body. I rarely allow an anxiety attack to escalate to the point where I feel the urge to self-harm. I use lip balm and apply it when I start to feel anxious – I pay attention to the feel, the smell, the taste. I take supplements and get exercise. I see my counsellor every other week, more frequently when things get bad.

I am 32 now.

I am currently depressed.

I wake up in the morning and I feel sad. I feel hopeless. I feel discouraged.

I haven’t reconciled with the addition of fibromyalgia to my life. I miss my dad. I miss my dogs. I am financially unstable, and frustrated by my ongoing mental health concerns. I am immobilized by anxiety on a regular basis.

But I have help. And I have a purpose. I believe that my weakness is one of my superpowers, that my willingness to speak openly about my struggles is part of my activism.

So I am depressed.

I am waiting for it to be over (for now).

I use all my new coping skills. I lean on my friends, as much as I can allow myself, and I breathe. I stretch. I take my supplements and drink my water and have epsom salt baths to help with the physical pain.

It is World Mental Health Day.

And this is my mental health story.