How to Talk About Pain

I’ve been housebound this Winter. It’s given me a lot of time to think, and a lot of time to write. I write/talk about pain a lot, and for the most part, I feel like a lot of my pals don’t know how – or even if – to respond. Sometimes I find this frustrating, but the truth is, I don’t know how to respond either. But I have learned that I prefer it when someone can at least say, “I don’t know what to say,” instead of pretending that I didn’t say anything, not responding, not commenting, not even writing a little less than three heart so I know I haven’t totally disappeared. <3

Sometimes it’s enough to say, “That sucks,” than nothing at all.

I went outside, very briefly, three times in January. I collapsed in public again. I cry-laughed with my hands and knees against the concrete, cane by my side, tears smearing my glasses, and I wondered if there was a proper response I was supposed to have in this situation. Am I supposed to try to get up right away? Rest on the sidewalk? Assure everybody I’m okay when I don’t feel okay? Move out of the way so as not to disturb the non-disabled passersby? If I don’t know how to respond to my own pain, can I expect my friends to know?

Last Summer, the same thing happened. I wrote about it briefly in this entry, Making Spaces Accessible & Scent-Free to Create Opportunities for Friendship, Connection, & Support, but I will write about it again. I was trying to walk because I wanted to be in the sun, but my body wasn’t having it. I crossed a busy intersection, and just as I got both feet onto the sidewalk, a spasm in my tailbone shocked my spinal column and my pelvis, the joints locked, and I hit the ground.

Nobody talked to me for the half hour I sat on the sidewalk, cane by my side, eyes wide with fear. I counted more than sixty people walk by, and I watched a few hipsters take selfies with novelty beer bottles on the patio nearby, refusing to make eye contact, before somebody else entering the bar saw me and came over, asked if I needed help. My body was still mostly paralyzed. I couldn’t access transit and couldn’t afford a cab. The only thing I needed was a ride home, and for somebody to acknowledge the fact that sixty people had just pretended not to see me.

He had a car, and offered me a ride. He carried my backpack and let me lean against him to walk. Yes, being disabled and getting into a car alone with a strange man is a dangerous and vulnerable position to be in. Yes, it was Mercury Retrograde, and we got lost in a maze of one-way streets and dead-ends trying to avoid rush hour traffic. Yes, my phone was dying. Yes, white privilege is what afforded me the offer of a free ride home. Yes, I felt grateful and terrified at the same time. But the Talking Heads’ Psycho Killer was playing on the radio, which was strangely comforting, and I didn’t have any gut feelings of doom – it felt luxurious to be inside a car in the city, to not be fighting for a seat on transit, to not be sitting on the concrete, wondering how and when I would get home.

I haven’t fully recuperated from that experience, nor have I fully understood all the potential, and conflicting, meanings in such an experience, but still, it’s another story. It’s part of the trauma of my disability experience, to be in pain and stranded, to watch people ignore me, to hope that the one person offering help isn’t going to hurt me in the process.

Another common response when talking about pain is that of unsolicited advice. I understand the well-meaning intentions of this response, but it often causes more harm than help. Regardless of intention, giving unasked for advice to sick, disabled, &/or crazy people sends the message, I don’t think you’re trying hard enough, and I know your body and your mind better than you do. I know I have friends who are filled with all kinds of wisdom & ideas & skills, and when I want their advice, I’ll ask. I also know I have friends who don’t understand fibromyalgia and disability; I encourage them to listen.

Last week, when I fell again (and I have fallen multiple times before and after each of these incidents – they are not isolated or rare, and each fall holds a different meaning for me), I decided I would allow myself to cry, and I wouldn’t be angry at all the walking bodies around me. We were emerging from another Mercury Retrograde, and the lessons learned, the messages received, were starting to coalesce into a solid realization that I could carry with me:

Nobody is coming back here to return me to my home planet.

It might sound ridiculous, but this was a major revelation to me – it still is. I’ve always taken it for granted that I’m not-quite-human, that I don’t-belong-anywhere, but I hadn’t realized exactly how ingrained these beliefs were until this Winter. I’m still processing them.

One reason I’ve been drawing more lately is that I wanted to be able to point to the places that hurt. I have not had a pain-free day for more than half a decade, but when somebody asks me what hurts, where it hurts, how it hurts, I have extreme difficulty getting any words together. It just fucking hurts everywhere all the time leave me alone pay attention to me.

I talk about pain because I can’t not. Pain and illness are not the only things I want to talk about, but they do inform every thought word moment experience, so I must. I write about pain not only to connect with other disabled weirdos, to work toward the possibility of us feeling seen with all our complicated multitudes, but also (begrudgingly) to translate myself to pals who aren’t in pain, or are in different kinds of pain, and don’t quite get it – for me, it’s important to make sure us disabled queers and weirdos have writing and art that affirms our inherent worth & beauty & wholeness, but I do still get caught up in attempting to explain myself to non-disabled pals, because that’s the life I’ve got, and I need their support, too.

Although I have full body pain (diagnosis: fibromyalgia), as well as chronic migraines, headaches, MCS, IBS, and other stuff (my doctor has brought up endometriosis as yet another possibility, but for complicated reasons, I haven’t been able to get the necessary tests done yet), much of my physical pain is concentrated in my pelvis. In trying to describe this pain to multiple people, whether they were friends, family, or doctors, I realized, again and again, that I did not know the names of the parts that were hurting. So, I found myself wanting to learn about anatomy, and wanting to draw more.

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I’ve learned the names of some of the parts that hurt. My sacroiliac joints, sacrum, coccyx, and hip joints are among the parts that are in excruciating pain at all times. This is the pain that means I can no longer take my ability to walk for granted. It’s the pain that means I can no longer carry groceries, travel, or stand up in the shower.

But it’s not just these joints that hurt. The other parts that hurt are: my spine, neck, and shoulders; my muscles, tendons, ligaments, and flesh; my arms, hands, wrists, and fingers; and my thighs, calves, ankles, and feet. And sometimes my ribcage.

Some of the activites that hurt my body are: walking, standing, sitting, lying down, sleeping, getting dressed or undressed, using pens and utensils and cups and dishes, preparing food, brushing my teeth, using my phone or computer…

I recognize that I’ve named just about every body part, and just about every crucial daily activity.

And I’m not trying to complain. I’m telling you that I am sick. I’m telling you that I might be sick forever. And I’m trying to be okay with being sick. I’m trying to be okay with not being returned to my home planet.

I still don’t know how to talk about pain. I’m experimenting with this conversation everyday.

Painfully Yours,
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P.S.: If you’ve benefited from my writing in any way – if my words have inspired you, helped you feel less alone, or sparked some weird feeling within you; if you’ve felt encouraged, or curious, or comforted – please consider compensating me by offering a donation of any amount. Whether you’ve been reading my writing for years, or just stumbled into me this afternoon, I invite you to help me sustain the process!

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Exploring Trauma, Madness, Chronic Illness, & Disability with Tarot: Part One

content note: self-harm & trauma feelings

Reading Tarot through a lens of madness, chronic illness and pain, trauma, and disability (and thus, poverty, too) comes naturally to me, as these are my daily life experiences, completely unavoidable and inseparable from my spirit, my creativity, and my values. I’m interested in the ways Tarot validates pain and teaches us how to explore our emotions and habitual patterns, how to communicate, how to make magic and art, and how to stay alive.

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In this entry, I’m exploring some of my feelings and experiences through two cards (The Five of Pentacles/Bones and Three of Swords/Feathers) and three decks (Pixie’s Tarot, The Collective Tarot, and Thea’s Tarot). Initially, I was gonna write about a whole bunch of cards at once, but it turned out I had more to say than I thought. So, I’ve labeled this as Part One of I don’t know how many potential parts, and I’ll hopefully be sharing more in the near future.

These thoughts are just a beginning, and not fixed definitions, but a mere exploration, or rough draft. I hope it’ll be valuable for other folks experiencing trauma, madness, chronic illness, and disability, whether you’re new to Tarot, or have been reading since forever.

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Five of Pentacles / Five of Bones

The Five of Pentacles may look like such a sad, grim card, but there’s so much in this image that resonates with me. For me, the image shows feelings associated with chronic illness & pain, fears and worries about needing/lacking support, feeling left behind, and the struggle to keep going. The person using crutches in this card has a friend with them, clearing a path to follow, but they’re both exposed to the elements, barefoot and mittenless in the snow. I can identify with both people in this card at different times; the ailing, disabled weirdo going fucking crazy in pain, and the barefoot pal who has become the other figure’s sole source of support. Both figures are burned out and in need of warmth, comfort, and nurturing – something they can no longer provide for one another on their own. (In another interpretation, the leading figure in the card might represent something more like a spirit, or hope, or perseverance, or a connection to the universe / divine / whatever that gives you meaning for your suffering, rather than a living, breathing human – it’s a crucial form of support, but no longer enough.)

This card can be a warning to re-think negative habits and thought patterns that keep you feeling separate from friends who might be able to support you, but it also offers validation for your fearful feelings, and your disability experience – yes, being traumatized and managing multiple chronic conditions at once can be incredibly frustrating, lonely, and scary. And for many of us, Winter aggravates these feelings as the city becomes even less accessible, and our apartments are old and cold and crumbling. Many of us, myself included, are not always able to access the support we need. At its worst, this card can denote severe isolation, psychosis, various levels of dissociation, and unbearable pain.

The Five of Bones in The Collective Tarot, showing a skeleton’s hand with grains of sand slipping between its fingers, makes me think of the way pain and distress gets us right down to the bones; it’s the sore wrist of typing for hours and not knowing if anyone’s gonna care about what you write anyway, it’s dropping utensils and pens and lighters, it’s needing help and not knowing where to go (and of being sick of oneself for still needing help after all this time); it’s the experience of being hungry but not being able to carry the weight of groceries anymore. The Five of Bones is being in an unwanted position of precariousness and vulnerability.

In Thea’s Tarot, the figure in the card appears to be protecting herself from being crushed. Everything is too much, and it seems like the best option is to hide, to protect our delicate body and fragile mind. Often, these are the kinds of feelings that can lead many of us to believe that we are at fault for being in this awful place yet again, for not getting our shit together and keeping it together, and we might find that we are blaming ourselves, using negative self-talk, and not trusting others to provide what we need.

The anxiety in this card seeps into all aspects of our day-to-day life and psyche; trying to access food and basic needs, surviving unstable and unreliable living situations, the discomfort and helplessness of being broke as fuck while rent rises and we’re evicted, or our friends are evicted, feeling trapped and forgotten, and wondering if our efforts to fight cynicism are worthwhile anymore. The Five of Pentacles is the point at which we wonder if we can keep going at all. It’s a feeling of being shut out with no more options left, when we feel we’ve exhausted the resources available to us through traditional health care as well as holistic alternatives and support through friendships. We see the light glowing through the stained glass windows and think, “Yeah, but that’s not for me.”

Some questions you may wish to explore when you draw the Five of Pentacles:

– How are other folks in similar situations taking care of themselves and staying alive? Can I connect with them?
– How do poverty and pain affect my mental health and my friendships?
– What can my feelings of resentment teach me, and how can I let go of them when I no longer need them?
– Can I name anything positive or meaningful in experiencing pain, anxiety, and madness?
– What am I grateful for today? (Think of simple things, like your morning coffee, access to meds, a weird dream you had last night, watching animals from your window, reading fiction, your library card, cheap lipstick, scent-free dollar store candles, whatever…)
– What’s behind the stained glass window? Can I access this space or create one of my own?

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Three of Swords

The Three of Swords may represent our coping mechanisms, negative thought patterns and self-criticism, over-thinking, loss and heartbreak (not necessarily in romantic situations), grief, depression, rumination, memories of rough times and traumatic experiences, melancholy, distress, feeling either silenced, unlistened to, invalidated, or worn out, and our own individual, personal triggers. Instead of digging the knives (or Swords) in deeper and watching them bleed, we might imagine reaching in and pulling them out, finding a way to take control.

The Three of Swords can hold messages about cutting and other forms of self-injury or self-harm as well. Cutting is a coping mechanism that has kept many of us alive for much longer than we thought we would be. Cutting doesn’t mean we’re broken, and does not necessarily mean we want to die either – instead, it often feels like our last option to keep ourselves alive, and can even be re-energizing when experiencing fatigue and hopelessness. Cutting and other forms of self-injury or self-harm don’t need to be indicators or evidence of failure or giving up. Scars (old or new) aren’t a sign of weakness; scars are a sign of healing, and they require our care and attention.

Self-harm happens for different reasons, and cutting is never ever shameful – neither having visible marks on your body, nor hiding them is something to be embarrassed about. Many of us keep our scars hidden not because we’re ashamed, but because feeling obligated to talk about it can be burdensome and, frankly, boring, and it’s good to be able to have boundaries around that stuff. But if you do feel embarrassed and ashamed (as I often have), you may wish to unpack some of those feelings. My feelings of shame around self-injury are often about my age – like it’s something I should be “over” by now. But it’s okay to not be over it. (I’ve written about some of these feelings in the past – please click the “self-harm” tag if you’re interested.)

Although I don’t believe cutting is the first habit one must quit in recovery, nor do I believe that quitting once means quitting forever, and I definitely do not believe that we cannot have a meaningful spiritual practice if we’re still harming ourselves, I do think that The Three of Swords urges us to find new ways to articulate our pain. Like me, you might have a mantra of “Do the opposite,” but when you’re feeling an urge to cut yourself, an opposite action might not feel accessible to you, and the act of writing in a journal, or texting a friend, or making a cup of tea might sound totally fucking absurd, and waiting half an hour for your anxiety meds to kick in might be an impossibly long time. That’s okay! Finding other means of re-stabilizing emotional equilibrium takes practice, and sometimes we hurt ourselves and take care of ourselves simultaneously.

In The Collective Tarot, we’re navigating our pain through writing and creativity, and daring ourselves to share it. I often feel alone with my pain, and lately I’ve been reminding myself that everybody is suffering just as much as I am. In Thea’s Tarot, the image alone is enough to hurt my heart – one figurd curled up, once again trying to protect herself, another figure walking away, and a Sword dividing them. They look defeated, lonely, and cold. I think they’re both considering looking at one another and making amends, but each one is waiting for the other to speak first. What’ll happen?

Some questions you may wish to explore when you draw the Three of Swords:

– What can I learn from this experience?
– Have I been in this place before? What helped? What hindered?
– All emotions are valid; what are these particular ones attempting to teach me?
– Is it time to reach out?
– Is there a favourite book I often re-read for guidance and comfort?
– What feelings am I trying to avoid when I hurt myself, and what feelings am I trying to create? Are there different ways of doing so?
– What happens when I resist the urge to hurt myself?
– How do I feel when I see my own scars? When I see others’ scars?
– What questions do I wish others would ask me? What questions do I like asking?

If you’ve made it this far, I’d like to say that I’m grateful you took the time to read this entry, and I invite you to explore the cards with some of these ideas in mind and see what happens. Take good care of yourself, forgive yourself, and keep making magic.

Tarotingly Yours,
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P.S. As you may already know, I offer Tarot readings at schoolformaps.etsy.com, and of course, I write zines, too!

P.P.S.: If you’ve benefited from my writing in any way – if my words have inspired you, helped you feel less alone, or sparked some weird feeling within you; if you’ve felt encouraged, or curious, or comforted – please consider compensating me by offering a donation of any amount. Whether you’ve been reading my writing for years, or just stumbled into me this afternoon, I invite you to help me sustain the process!

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Disrupting Recovery as a Linear Path of Progress

As a traumatized person, I don’t believe exclusively in clock-time, nor do I believe in static, unchanging memories or a linear path to recovery; my memories and my stories change all the time, my perspective changes all the time, and I learn new information about brains and bodies and trauma all the time. And sometimes I compare stories with my twin, and we remember things differently. But neither one of us has a memory that is inherently more reliable or trustworthy than the other – our memories may not always be “right” or “correct” but they are nevertheless true.

Everything I am fluctuates. I identify as one thing, and then another. I identify as nothing. Sometimes I feel grateful, sometimes angry and lost. Sometimes I feel bitter, other times calm and soft. Sometimes I feel judgemental, other times compassionate. And this is an incomplete list of emotions that I generally experience all within a single day. And neither is better than the others. My emotions contain information, which I can use wisely if I listen.

Perhaps one delight in being a non-binary borderline is the necessity of re-navigating some of the binaries I’ve been taught to believe in (intentionally or not). As someone with BPD, I have a tendency to fall toward black-and-white thinking, all-or-nothing thinking, and in my connections and perceptions of others, I’ve still got a bad habit of idealization and devaluation; and while there are valid reasons for developing these thought habits, which are a form of coping in a confusing, painful world, I know that neither side can be fully true.

Some of the other false binaries I’m unlearning in recovery are: well/unwell, healthy/unhealthy, sane/crazy, forward/backward, vulnerable/insensitive, and whole/broken.

Instead, I must dare myself to look outside of the sharp lines, and find the softness and blurred pigmentations and greys and pastels and anything other than black-and-white.

I drew this diagram in an effort to help show some of our ideas of healing and recovery, vs. the messy realities.

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If I don’t believe in one kind of time or one true memory, I also cannot believe in recovery as a steady, linear path of progression. I cannot believe that I have only one story to live, and to tell. I am in recovery, but I am not “getting better” or “getting worse.” I’m recovering, but I don’t expect to be “recovered.” I’m healing, but I don’t expect to be “healed.” I am whole and disabled all at once.

And if I don’t believe in a linear, progressive recovery, then I can’t believe in relapses or setbacks either. And if I don’t believe in relapses or setbacks? Then I really can’t believe in failures.

The image below is a page from Girl in Need of A Tourniquet: Memoir of a Borderline Personality by Merri Lisa Johnson.

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One reason I think binaries like well/unwell and healthy/unhealthy are false is that they can only be defined by the individual (if at all) – there is no single way to be well, or to be unwell. Health looks and feels different to each of us. The choices I make in recovery are not the same choices I’d want every borderline, or every recovering alcoholic, or every traumatized person, or every disabled person to make.

I want to let go of being “fixed” because I am not broken and “fixed” because I am not static; I want to let go of the idea of an upward, forward trajectory of healing. I want process, not progress, spirals not lines, learning lessons not mistakes, the confusing complex wonderful scary magic flesh dirt sky daydream not “good” and “bad”; I want to be okay with knowing all my thoughts & feelings & words are rough drafts.

If “sane” and “crazy” cannot be perfectly defined, if they are an untrue binary, then what does recovery look like? What does a life worth living look like? Where do the lines shift, and blur, and erase? Is it completely within our control?

I want to be able to trust my non-chronological memories, their distortions and details and lack of details, to know there is meaning, there is story/stories, regardless of whether or not I can zoom in, zoom out, focus exactly when and where I want to (or block the shutter when I don’t want to see/remember); regardless of whether or not there is one single truth in memory, one explanation, one way out.

So, maybe integration is not necessarily a goal, or at least not the end, and certainly not something that can happen only once. Maybe integration is not a fixed, constant way of being and moving through the world and understanding my own psyche and habits and creative processes; maybe integration cannot be fully achieved and complete, and permanent. I do think integration can happen, I just think it happens in different ways throughout recovery, looks and feels different to each individual, and cannot be defined and held onto.

I can’t tell a story of a) this is how I got sick, b) this is what it was like, and c) this is how I got better. Because that’s not how illness, craziness, and recovery are happening for me.

When I think about BPD stories, getting sober stories, healing stories, mad stories, trauma stories, I think: I don’t want to hear anymore triumphant tales of overcoming trauma and transcending pain, of becoming enlightened and whole; nor do I wish to hear anymore stories romanticizing or sensationalizing depression, dissociation, psychosis, or suicide / suicidal feelings (and no more ostracization or abandonment of those of us who experience these things to various degrees). But what I do want are the honest messes, the vulnerabilities and defense mechanisms and fears; the stuff that happens in the middle and on the edges; I want complexity and nuance and questions. I want becoming, not being. I want everything unfinished.

Continuingly Yours,
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P.S.: If you’ve benefited from my writing in any way – if my words have inspired you, helped you feel less alone, or sparked some weird feeling within you; if you’ve felt encouraged, or curious, or comforted – please consider compensating me by offering a donation of any amount. Whether you’ve been reading my writing for years, or just stumbled into me this afternoon, I invite you to help me sustain the process!

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listen to your hermit

Hello, dear readers. I’m feeling quiet and contemplative these days, but wish to send you a few notes on what I’m up to (or what I’m thinking about) lately. Although it’s unusual and maybe a little frightening that it hasn’t snowed yet, I’ve been grateful for the clear paths of the sidewalks, the frost on the grass that melts before I’ve eaten breakfast, because it means that I can still walk, if only a little bit. Once the ground is covered in snow and ice, it becomes significantly more difficult, and sometimes entirely impossible, for me to walk. Even the nearest streetcar stop or bus stop will be too far away, and besides, the city has been getting rid of the shelters and seats at some of the stops I use, so they will no longer be accessible.

Many of us are accustomed to embracing our inner hermits at this time of year, to getting cozy, staying home, writing letters, but as a physically disabled person who is often isolated anyway, Winter is becoming more difficult and complicated than it already was. I am fatigued and freaked out, wishing to retreat, but needing to find a balance and invite my friends into my home, to stay in touch, so I don’t feel too lonely, too scared, too angry about my physical pain and the inaccessibility of the city.

Last week, I drew a picture of myself as The Hermit, carrying a lantern that accidentally looks like an apple core, a magical item with many meanings, in a dress with nine buttons with a pattern of flowers each with nine petals. I love the cards with creatures with canes – they hold new meanings I wouldn’t have found if it weren’t for my own experience using a cane.

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The Hermit is a misunderstood creature – The Hermit is, of course, overly romanticized, and the image of the person with the dark cloak, the lantern, the tall walking stick, turning away, face hidden behind their hood, is familiar – I feel as though I knew it before I knew the Tarot, and had already made up a story. The Hermit can be a little intimidating, too. What do they know? What are they hiding? Will they come back?

I don’t think The Hermit is truly running away, hiding, leaving anyone they like or love behind – they are simply retreating, making space to learn, to grow, to change, and they are not yet concerned with how they’ll bring their messages back to their pals, but they will. It may not be in words – perhaps a new energy, a new project, a new method of communication, a new way of listening, a new way of being (then again, sometimes words are best, even when they don’t feel like enough). The Hermit knows the differences between isolation and reprieve, hiding and recuperation – I don’t always know, of course, or I don’t always feel I have a choice, but some part of me is learning.

Although it doesn’t quite feel like Winter yet, I’ve added a winter survival coupon code to schoolformaps.etsy.com, so you can gather zines to read as it begins to snow, if you wish. Use coupon code ‘wintersurvival15’ during checkout for 15% off zines, books, and Tarot readings throughout December. Please note that I will be putting many of my zines out of print by the end of the year, so this will be your last chance to read them.

Hermitingly Yours,
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P.S.: If you’ve benefited from my writing in any way – if my words have inspired you, helped you feel less alone, or sparked some weird feeling within you; if you’ve felt encouraged, or curious, or comforted – please consider compensating me by offering a donation of any amount. Whether you’ve been reading my writing for years, or just stumbled into me this afternoon, I invite you to help me sustain the process!

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lethargy & optimism

Every November, I experience a particular, familiar fatigue, the same repetitive thoughts from the year before. It is the season when chronic suicidal ideation strengthens, when it takes root and rapidly solidifies itself in my brain, my blood, my heart and I want to give up. My neighbours choose one sad song and listen to it on repeat for hours, and I cannot escape for my body is in pain, it’s raining, and I cannot afford a coffee every time my home feels to confining for my weakened joints and scattered brain – so I teach myself a cognitive trick, pretend my neighbours know how I’m feeling, care how I’m feeling, and are playing my favourite song in an effort to comfort me from the other side of our too-thin walls, in a crumbling building older than my grandparents, walls with more stories than I’ll ever be able to know.

Each morning, I wake up surprised to begin another day. I slip off my eye mask, put on my purple glasses, take out my swimmer’s ear plugs and place them back in their plastic case, and turn down my white noise machine – not off, just down. I have lived through days that felt impossible, I have felt like the cliché of the phoenix rising from the ashes again and again, I have felt like a caricature of a borderline, and I have felt both re-energized and motivated, and lethargic and fucking bored. My heart feels heavy and my limbs feel weak.

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A small corner of my birth chart. Every Scorprio season, the Sun sets aflame the influences of Saturn (rules, structure, boundaries…), Mercury (communication, connections, processing), and Pluto (darkness, shadow sides, destruction of illusions…), as well as my South Node (habits, lessons from the past, gifts, & un/learning…), and asteroid Juno (relationships & partnerships, issues with jealousy & trust…) all at once. Fuck you, Scorpio season.

Lately, I’ve been crying everywhere. I cry on every transit ride I take, I cry in waiting rooms and cafés, I cry at home, in bed, and on my floor; I cry at the post office, the park, bookstores. I cry while I’m performing, cry when I hear about another event I’m missing out on, cry when I feel left out or forgotten, cry when I’m bored of crying. It’s still new to me to be able to cry, especially to be able to cry in public, without also wanting to die – the first time it happened, I was on a bus, on my way to a doctor’s appointment, and the driver had scolded me for not waiting close enough to the bus stop, but remaining at some distance, where there was a bench – he did not want to hear about how I can no longer stand up for the length of a song, let alone an unpredictable bus schedule. So I cried, but I wanted to live. And that was new.

It’s not always like that, though, especially in November – sometimes I do still want to die. It’s always been a difficult season for me, but with my ability to walk becoming less reliable, and with less access to basic needs, each struggle compounds one another until it seems futile to continue – embarrassing, even. When I imagined making art, offering Tarot readings, writing another zine – I felt this awful foreboding, like anyone who saw it would think, How dare you? How dare you try to live? How dare you try to connect, to support, to share, to ask? Why bother?

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I turned thirty a month ago. My twin came to the city, and we launched our split zine, Telegram #38 / Critical Breakfast #1. Among other things, we wrote about our Return of Saturn, which happened last November. Although it is not uncommon for me to cry while reading, it surprised me when I did at our launch because I hadn’t been feeling anything beforehand, hadn’t been feeling anything as I was reading. I laughed about it and kept reading – my throat choked and tears appeared, but I didn’t feel much. I am accustomed to feeling numb. Afterward, I offered pay-what-you-can Tarot readings, shuffling the vibrant cards of my Magic Mirrors deck, holding a small space, sometimes painful and sometimes sweet, for each question, each story.

You can buy our split zine through my Etsy, schoolformaps.etsy.com or my twin’s zine distro, Fight Boredom. In Telegram #38, I write about my Return of Saturn and turning thirty, learning how to interpret my birth chart, astrology as a method of self-exploration & healing, reconnecting with past selves and memories of being a teenage witch, practicing Tarot in daily life, lost time, friendship & jealousy, fragmentation, learning how to love myself, and recovery with trauma and chronic pain. In Critical Breakfast #1, Amber Dearest writes about her Saturn return, synchronicity, a bad landlord, working as a lab rat, sobriety, building self-confidence, and an auspicious Tarot reading.

I had no plans for this age, and I still don’t. I have no solid goals. My health is too unpredictable for long-term plans, too precarious for creating step-by-step guides to making dreams come true, for “manifestation,” for imagining anything beyond next week. But despite not knowing where the water will come from, not knowing what the harvest will look like, despite the seemingly toxic soil and shadows obscuring the sun, I plant seeds. I scatter them, not counting them, not noticing their shape or colour, not knowing if they’re root vegetables, healing herbs, or trees where squirrels will play; maybe they’re nothing. Maybe they’re already dead. But I have them. They’re mine.

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This Fall, I began offering online Tarot readings through my Etsy shop, and I am now offering readings in my home in downtown Toronto as well. I live in a little bachelor apartment I’ve named Amethyst Cove, and I’ve set up a small space, deep violet meditation cushions on a fluffy lavender rug on my kitchen floor, where we can explore the cards together. My spirituality is grounded in my ongoing experiences with madness and disability, and my Tarot practice prioritizes mad folks, crazy people, disabled folks, queers, trans folks; and writers, artists, and weirdos. Let’s collaborate with one another to create a space that is healing, inspiring, compassionate, wise, re-energizing, and caring – and, of course, confidential. My readings are also pay-what-you-can! Please read on for more information.

Zines, Tarot readings, blog entries, texts to friends, appointments, workshops, books, a cup of coffee – to carry the lazy but apt metaphor – they’re all seeds. I dare. This is how.

Goallessly Yours,
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P.S.: If you’ve benefited from my writing in any way – if my words have inspired you, helped you feel less alone, or sparked some weird feeling within you; if you’ve felt encouraged, or curious, or comforted – please consider compensating me by offering a donation of any amount. Whether you’ve been reading my writing for years, or just stumbled into me this afternoon, I invite you to help me sustain the process!

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making spaces accessible & scent-free to create opportunities for friendship, connection, & support!

I’ve been telling my pals I’m gonna write a blog entry about Multiple Chemical Sensitivity soon, but have been avoiding it because I don’t like talking about it. But it feels like it’s time now, so I’ll give it a try! First, I just wanna say that this is not intended to be a comprehensive text or resource about MCS; I’m not gonna say everything that could be said about it. I can’t. It’s just a few of my own experiences, my own stories, offered as a contribution to the information already available, and I hope it’ll get folks to feel some feelings about accessibility, disability, and chronic illnesses. I also wanna note that I’m not gonna try to write this well, or eloquently, or anything, because I don’t feel like it. The subject wears me out.

I’d also like to note that many disability justice activists and artists have already been talking about creating scent-free spaces for years, with various perspectives – certainly before I knew it was a thing and took it seriously, and definitely before I developed a chronic illness myself. I’ve also been talking about MCS in zines and online for a couple years, but it’s a daily frustration (read all those links before you try to talk to me about it!), so I’m bringing it up again.

When I write about accessibility, I prefer to share my own feelings on how it feels to lose access to spaces many of my pals can take for granted, to become ill in spaces that I am meant to be a part of, that I want to be a part of, but often can’t. There is magic in disability, yes!, but much of my experience of disability involves loss and disconnection. I don’t wanna write anymore how-to guides or try to convince non-disabled people give a fuck about me. I’ve tried being mean about accessibility, and I’ve tried being patient and kind. I don’t know what else to try. So I’ll try this.

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Like every other illness I have (I won’t write a list here, but I recently filled out some forms on which I was able to name fourteen diagnoses I’ve been given! Gosh!), MCS affects me in every moment, everyday, no matter where I am or what kind of headspace I’m in. I get sick and I get sick often. I didn’t always have MCS. I began to get sick from synthetic scents and cigarette smoke when I was in my early- mid-20’s, and it’s gotten progressively worse since then. When one has MCS, as well as various other disabilities and chronic illnesses, no space can be truly, fully accessible – often, not even our own homes, especially if we live in shared buildings or have roommates, etc. But we can work toward making spaces as accessible as possible!

Thanks to MCS, some of the places I get sick are: cafés, libraries, sidewalks, transit, 12-step meetings, theatres, concerts, readings, events, zinefests, parks, waiting rooms, bookstores, yoga classes, friends’ homes, and my own home. And that’s an incomplete list! Not everyone with MCS is allergic to the same things, or gets sick in the same way. Some folks are allergic to perfume and cologne; others are allergic to essential oils and incense; some folks with MCS are allergic to cigarette smoke, and others are smokers! Some folks will get sick right away when they come into contact with scents, others will get sick later.

For me, MCS does not operate on its own. It’s interconnected with my other illnesses, mental and physical. I have BPD, complex-PTSD, and fibromyalgia; among many other things, some of the physical manifestations of those conditions, for me, are fatigue, chronic headaches and migraines, and multiple chemical sensitivity. I like to think that my friends are conscious and knowledgeable about how to make spaces accessible for folks who’ve survived trauma, since so many of us have, but in my experience, MCS has almost never been taken seriously. My accessibility requests are inconvenient. People get miffed when you tell them scents make you sick! Like with so many of my conditions, I am just being “too sensitive.” And I don’t look sick enough, so it’s not real.

When I’m in a space where folks are wearing scents or smoking, I get nauseous and am unable to breathe, I have panic attacks, and I get a headache which often becomes a migraine, which leads to puking, weakness, and becoming bedridden, sometimes for days. I once had a four-day migraine that led me to ER. Sometimes scents can trigger traumatic flashbacks and dissociation. I keep a whole lot of meds and other fun things on me at all times, but it’s not always enough (and I’m on Disability, which covers some meds, not all them, and absolutely no other forms of treatment for physical and mental health conditions).

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Losing access to spaces means losing access to friendship, connection, meeting new people, gathering with friends, experiencing performances and readings, supporting friends & artists, etc.; it leads to loneliness and isolation. If someone already has a mental illness that involves chronic feelings of emptiness, loneliness, and isolation, spaces becoming physically inaccessible will exacerbate those symptoms.

I’ve been losing my ability to walk for a few years. I’ve been using a cane for a year and a half, but sometimes I can’t walk at all. Sometimes when I’m walking, I look totally okay, like I’m not experiencing pain at all. Sometimes people tell me my cane is cute, and they think it is an affectation, not a real thing. Other times, I do look sick, and I have a great deal of trouble walking. Sometimes I crawl through my apartment or cling to the walls for support. I have collapsed in public, alone, more than once, and not been offered help. A couple weeks ago, I fell, and I curled up in a ball on a busy sidewalk with my cane by my side for nearly half an hour before anybody asked if I needed help. I never, ever look sick enough.

MCS becomes more difficult to navigate with a chronic pain condition, and an unreliable, unpredictable ability to walk. I’m not sure if I know anyone with MCS who doesn’t also have at least a few other health conditions to take care of, including chronic pain. When someone wearing scents enters a space I’m in, I can no longer rely upon the option of simply getting up and walking away (not that I should have to). If I stay or if I go, I will become ill.

I don’t expect the planet to become scent-free. However, it’d be cool if my pals made efforts toward creating scent-free spaces anyway, to offer us just a few hours of justice and accessibility in an inaccessible world; I might get sick on my way to your event, or on my way back home, but it’d be cool to have the experience of being in a space where my accessibility requests are respected, and where I can hang out with my friends without worrying too much about puking on them or having to leave and miss out yet again (or stay and miss out anyway because when I’m triggered by scents, I am barely able to focus on conversations going on around me or stay present anyway). And maybe this request could go beyond one-time-only events and become integrated into our daily lives.

If you’re holding a scent-free event, it’s important to have a plan in place for if/when folks arrive wearing scents anyway (I’ve never, ever gone to a scent-free event where every single person was scent-free! And I’ve gone to scent-free events where the organizers were wearing scents!), and it is not up to folks with MCS to implement this plan; we’re gonna be busy trying not to puke, so someone else will have to approach them with the ol’ accessibility policy and ask them to wash off their scents or leave, okay? And I don’t want to judge anyone, or shame anyone, but I also don’t always have the patience to explain to folks why accessibility matters, and why their feelings about how very difficult it is to respect disabled folks’ accessibility needs don’t matter to me. That’s what “allies” are for.

And this is a fine time to note that you might as well become an ally (as much as I hate that word, and must remind you that it’s a verb, not a noun) now, because you will certainly become disabled at some point in your own life, and you’ll join my side of the struggle, trying to convince your pals that your experiences are real.

Sickeningly Yours,
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P.S.: If you’ve benefited from my writing in any way – if my words have inspired you, helped you feel less alone, or sparked some weird feeling within you; if you’ve felt encouraged, or curious, or comforted – please consider compensating me by offering a donation of any amount. Whether you’ve been reading my writing for years, or just stumbled into me this afternoon, I invite you to help me sustain the process!

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friendship, jealousy, & fear of being forgotten

I’ve been grappling with the idea of paranoia as an intense expression of one’s fear of being abandoned or forgotten. I am thinking of abandonment as an experience that happens to one before they have learned how to speak, and happens over and over in different ways as one grows up, creating such an intense fear that it becomes unclear which thoughts, emotions, and behaviours are rooted in that fear, and where that fear itself began. And I am thinking of being forgotten as less intense or intentional, less definable, but, the thing that happens accidentally, perhaps when two or more people with the experience commonly labeled as ‘lack of object constancy’ stumble into one another, share a moment of joy and validation, and then forget to call back, forget to reconnect.

I’ve also been thinking about what it means to prioritize friendship (or, to be more specific, to prioritize queer disabled mad femme friendship) when many of us are not fully “healed” or “recovered” and maybe never will be. (I know we all have different feelings about recovery and healing; my personal belief is that I am never going to come to the end of this path, realize my one true self, and be done with it – I will be in this process until the day I die: healing, recovering, learning, practicing…) When each person involved is sick in some way, or in pain, or crazy, or traumatized, or disabled, or broke, or all of the above and then some. When we all have our reasons for not being able to be present, physically or emotionally, as often as we’d like to be.

My friendships feel fragmented and inconsistent; but sometimes they feel joyful and magical, too. How can I find a safer balance of these feelings? Can I hold them all at once? How can I seek deeper connections? How do we learn how to trust and support one another? What does it mean to be visible through ones’s art & writing yet still feel deeply disconnected? How can we help one another feel validated, affirmed, and seen? Trauma, chronic pain, and anxiety all contribute to my friendships feeling detached or disembodied in some way, kept at some distance from my heart, reaching out but feeling incomplete; yet, if I were given the option never to have experienced these disabilities, I’d say no.

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Three of Cups: The Wild Unknown, Radiant Rider-Waite-Smith, and Kitty Kahane’s Magic Mirrors

The Three of Cups, for me, represents my ideal feelings of connection and friendship, including the fleeting and impermanent ones, because they are necessary to keep on going, too. This card often appears when I need a reminder that when I’m feeling lonely or disconnected, I do have good friends, I have the potential for working toward meaningful friendships, and unbelievable as it may seem, I have friends who think about me and care about me when I’m not around. I like to imagine the Three of Cups as a coven that has come together to deepen their practice after surviving trauma, invalidation, and self-doubt. I like to think of them as friends who haven’t always been present for one another, but are learning how to be more present and dedicated in their friendship, and how to share their feelings, their pain and their joy, how to make magic together. They are friends who would not have found each other if it weren’t for all their crazy coping mechanisms that kept them alive so they could experience this moment.

My BPD symptoms have become less visible in my daily life; I am less reactive than I used to be, I am significantly less destructive and self-destructive than I used to be, I am less impulsive, and my life is less chaotic. However, I still have fears of abandonment and being forgotten, issues with a sense of identity or stable, consistent sense of self, difficult and frequent emotional triggers, and anxiety. I have a lot of difficulty with interpersonal relationships, and sustaining meaningful friendships. There are still times when I worry my friends are gossiping about me or even actively organizing against me, making a plan to shut me out for good.

While my imagination can put me in all sorts of scenarios that are likely not actually happening, my fears of abandonment are not entirely irrational (I don’t believe any fear is irrational, no matter how “crazy” or ridiculous it might appear). While many of my fears began in early childhood experiences, I’ve also lost friends, or lost my trust in friends, enough times throughout my 20’s that I know that abandonment, disappointment, and loss are real risks, not just fears to let go (or maybe they are both). One of the emotions that has led to the endings of some of my friendships was jealousy.

Jealousy, for me, is part of my experience of fear of abandonment or of being forgotten. Jealousy is interconnected with fears, resentments, rage, and even, in the past (self-)destructive behaviour. I’ve been doing hard work with this specific emotion and the way it manifests in my life for years, and it still arrives more often than not, tugs at my heart and grips my throat, not done with me. And, as you may already know through personal experience, jealousy becomes so much more complex when we’re surviving experiences like BPD, (c-)PTSD, chronic pain and illness, etc. But those complications give us so many more opportunities to learn, as long as we can rest with them long enough to listen.

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Three of Cups: Tarot of the New Vision, The Collective Tarot, Thea’s Tarot

I’ve written about jealousy in the past, and I feel the need to share those pieces again. In 2012, I wrote Creativity and Jealousy: stories, how to deal, & questions, and in 2013 I wrote The Other Side of Jealousy. I don’t usually like to look at my old writing, but when I returned to these entries, I was happy to see that I’d come up with some valuable ways to cope with jealousy that are still useful to me today (even though I’m sure I’d hoped I wouldn’t need them anymore by now), and was also grateful that I’d been able, sort of, to name the fear that each time somebody made a piece of good art, there’d be less space for mine, less time for mine, rather than more.

Lemme say that again: One more good book / zine / blog / idea / performance / event / band / what-fucking-ever in the world makes more space for yours, not less. And I’m not being an arrogant jerk about this; this is a reminder than I need everyday, too.

One of the reasons I’ve worried about being forgotten is because I’ve become less visible in certain ways, sometimes by choice (like by deleting my Facebook account over a year ago, and blogging less), and sometimes not (like no longer being able to travel to zinefests, stay out late at night, or attend/organize as many events as I would like to). These experiences have given me opportunities for plenty of self-reflection, recovery-work, and magic-making, but it’s lonely, too. I’m trying to accept the paradox that the process of recovery can trigger the negative emotions and behaviours I’m recovering from. It’s okay.

I want to honour the part of myself who fears being forgotten, rather than react to it or try to escape it. I want to honour the hermit, the solitary, the quiet part of myself. I want to take a deep breath and know that all of my feelings and worries are valid; they may inform how I interact with the world but they don’t need to control it.

Fearfully Yours,

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P.S.: If you’ve benefited from my writing in any way – if my words have inspired you, helped you feel less alone, or sparked some weird feeling within you; if you’ve felt encouraged, or curious, or comforted – please consider compensating me by offering a donation of any amount. Whether you’ve been reading my writing for years, or just stumbled into me this afternoon, I invite you to help me sustain the process!

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