Dare yourselves to reach in.

Winter is lonely.

While Winter is difficult in the best of times, it is significantly more so for those of us who are disabled. Between inaccessible sidewalks covered in ice and snow, chronic pain flare-ups triggered by cold temperatures, and early sunsets eliciting depression, many of us end up stuck at home.

As somebody with a severe mental illness who’s also spent several Winters (and Autumns and Springs) housebound with chronic pain, I’ve had many opportunities to observe the ups and downs of these particular conditions. While I’ve found much joy in being indoors all day everyday (writing a million words a day! Reading hundreds of books! witnessing sunsets that look like rose quartz carnelian lapis lazuli bleeding through the sky! daydreaming! connecting with weirdo cripples near and afar! not being street harassed!), I’ve also fallen into such deep wells of loneliness that I became dissociated and disconnected from reality.

While Winter is difficult in the best of times, it is significantly more so for those of us who are disabled.
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Even for those who are not fully housebound, mobility becomes severely limited when it snows, and our participation in friendships, communities, and public spaces, as well as our ability to do boring survival stuff like run errands, is hindered. Remember, while some of your disabled pals might look cute and productive online, we are struggling at home.

Initially, as I was adjusting to becoming more-or-less housebound, the sheer aloneness of it all triggered some of my worst symptoms, including paranoia, suicidal thoughts, and intense rage and jealousy. I was also sincerely frightened. Frightened that my pain would get even worse, frightened that my friends would leave me. Those things did happen, but I’ve survived thus far, I’ve learned a hell of a lot, and I want to share some of it with you.

Before offering suggestions, I’d like to note that many disabled folks are either too shy to ask for support, overwhelmed with unlearning internalized ableism and navigating our culture’s insistence on self-reliance, or simply burned out. When conditions are chronic, and when we’ve been let down by friends in the past, many of us, myself included, are weary of reaching out.

If you have disabled friends — and most of us do, I hope — I can assure you that they’ve experienced at least one of these barriers to asking for support, if not all of them. Instead of waiting for us to reach out, please dare yourselves to reach in.

1. Bring us food.

Whether you’re gifting us with a take-out or delivery meal, carrying groceries, or cooking at your home or ours, disabled folks need warm, healthy food in Winter. We’re often not able to provide it for ourselves. Ask your friends if they have any food intolerances, and show up accordingly. Consider either gifting us with food, or working out a budget with us so we can give you cash (or a trade, like editing services or a Tarot reading!) to pick up necessities. I personally am fond of burritos (yam! Pulled pork! All the toppings!) and rotis (veggie korma! Lamb! Extra peas and broccoli, please!), and am often in need of vegetables, fresh greens, and bananas and avocados galore. Maybe cantaloupe, kiwi, and watermelon, too?

Disabled folks need warm, healthy food in Winter. We’re often not able to provide it for ourselves.
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Chopping fruits and vegetables is not always possible with chronic pain, so pre-cut and pre-packaged is a better way to go. Many disabled folks are poor, so it’s wise to check in and see what your friends can or cannot afford. For example, I have perishables delivered from Walmart, which means I eat a lot of discounted oatmeal and Mr. Noodles, but fresh produce delivery services, much-needed as they are, are beyond my financial means.

2. Come over and read with us.

Sometimes we don’t need intense conversation (though often we do!), but just company. I read 121 books in 2016, but haven’t had a lot of pals to discuss them with, and am not able to participate in book clubs for many reasons, multiple disabilities being at the top of that list. But I’ve been underlining, taking notes, asking questions, and dreaming. And I’ve been writing. I spend a lot of time in libraries, but that’s not a possibility in Winter. Reading different books in quiet company, chugging coffee together, interrupting the silence now and then to read a favorite line out loud or discuss an idea the author is describing, would be dreamy.

3. Send a text.

Send a text just to say Hi, I’m thinking of you. We don’t have to be BFF’s. If you haven’t talked to someone for three months, six months, a full year, please consider texting them to let them know you value them and haven’t forgotten them. Magic will happen. To be alone at home for such an extended period of time feels, and often is, a form of abandonment. It’s easy to believe you’ve been forgotten. There’ve been many times in my life when I’ve received a short text with a few cute little emojis at a moment of despair when they were needed the most. You could be the person who sends that text. (And hell, maybe we could dare each other to (re-)learn how to talk on the phone as well.)

4. Text to say more than just Hi.

Let’s have real, tough, vulnerable, magical conversations. Let’s share what’s going on in our lives beyond small talk and the weather (even though I actually love discussing the weather, and it’s something I’m doing this very moment). Let’s ask each other difficult questions. Let’s ask each other about our dreams and then work toward making them come true.

5. Set writing goals together.

I’m lucky to have many friends who are writers and zinesters. Whether or not we can be in the same space, we often share word count goals, writing prompts, and words of encouragement. Alone but together, we get stuff done. Writing can be lonely work. It makes a difference to have a few pals to check in and exchange ideas with.

6. Shovel and salt our sidewalks.

Many, if not most, of us are living in buildings with negligent landlords (to say the least). Whether or not other tenants in the building understand that we’re disabled and take these small tasks into mind, many don’t, nor should they have to. While general maintenance of the building is the landlord’s legal responsibility, in my experience, it’s been rare indeed to have a landlord who keeps up with ordinary chores. Have you ever tried to push a wheelchair through snow? Have you ever held your cane’s icepick toward the ground, only to watch it slip out from under you? Clear sidewalks are necessary for the safety of everyone, especially disabled folks. A small path cleared from our entrances to the sidewalks (and garbage bins!) is a lovely gift to give a friend. Remember to clear the pathways at your homes and workplaces, too.

7. When you invite us somewhere, please give us as much accessibility information as possible.

A few years ago, I created the term “accessible physically, financially, and emotionally” as an attempt to define and navigate various forms of in/accessibility beyond ramps. While exploring this term is beyond the realm of this specific piece, you’ll find it useful to think of these terms when describing spaces to your friends. Are there stairs? Is it scent-free? How much will it cost? Will there be seats to rest our sore bones? These are just some basic, beginning questions to ask. Whether you’re inviting us to a public event or into your own home, these queries are crucial.

8. Support our work.

As you may have noticed, disabled folks have tons and tons and tons of incredible writing and art online! And in books! And in zines! And more! And more! And more! And even more! We’re everywhere!

Disabled folks are creative as gosh.
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Disabled folks are creative as gosh, and many of us write compulsively — not because we’re getting paid or getting paid well, but because we must. If you like our writing, a) tell us so, b) share it, and c) keep clicking on our Paypals, Cash.Me’s, and ko-fis. I and many of my friends are on social assistance. Although it’s recommended that one spend 30% of their income on rent, most disabled people spend significantly more than that to live in substandard housing — for example, I spend 75% of my income, and rent in small towns and cities alike is only getting higher. That means literally every penny and every dollar count.

Be kind, be generous, show your appreciation! (But also, don’t just value — or co-opt! — our work: value us.)

9. Understand that while our pain must be acknowledged, it’s not the only thing we’re capable of talking about, and many of us may not want to discuss it at all.

I write about pain often, but I don’t love discussing it in person because it often turns into a trigger-y cryfest for me. Experiences of chronic pain are not only physical, but have emotional, financial, and spiritual repercussions as well. For those reasons, it’s a complex and stressful topic. If you haven’t experienced debilitating pain resulting in limited mobility, as well as the misunderstanding and invalidation inherent in the medical health-care system, please know that it can be a sensitive topic. If we don’t want to talk about it, please don’t take it personally.

10. If you say you’re gonna show up, please do your best to actually show up.

We all cancel plans for various reasons, and that’s okay, but when folks say they’ll be able to give us rides or help carry groceries, and then stop calling, this has devastating consequences on our mental and physical health. Here’s another term I recently created: “Inconsistent (or intermittent) interdependence.” In cripple communities and disability justice spaces, we talk a lot about interdependence. But because I’ve never felt a sense of belonging in a particular community, or experienced consistent and reliable care and support, I haven’t been able to relate to the interdependence model. Instead, I’ve labeled it as inconsistent, which is more true to my own experience, but leaves space open for possibilities — sometimes friends, new and old, really do show up!

This list is necessarily incomplete. I encourage you to try a few of the suggestions, see what works and what doesn’t, and write your own lists. Talk to your sick and disabled friends. Talk to each other. Stay warm, stay weird, and keep living.

Original illustrations by CB Lavery.

Although tempted to begin by qualifying myself as a borderline — telling the story of how I was diagnosed; listing the diagnostic criteria; describing how and when I started cutting myself, how and when I started drinking, how and when I became crazy, how many times I’ve tried to kill myself, how many times I’ve been hospitalized — I’m instead going to begin from a place of reclaiming. I’m writing for the borderlines who are sick of clichés, who are looking for new ways to describe ourselves, to dream ourselves. I’m writing for borderlines who wish to recreate our own meanings.

Rather than beginning with an origin story, I’ll begin with a suggestion, a dare: Let’s imagine the diagnostic criteria for borderline personality disorder as poems that were written about us, but not for us. Let’s imagine we were used as muses for the professionals who wrote the Diagnostic and Statistical Manual of Mental Disorders. Let’s imagine they’ve been at their easels and keyboards and sketchbooks and guitars for too long; now they’ve set down their artistic instruments and are in the next room taking a break. Here’s our chance to escape.

Let’s resituate ourselves. Let’s become the artists. Let’s escape their studio, rewrite their poems, and live our own meanings.

This essay is an invocation, one more piece in the unsolvable puzzle of reclaiming borderline. It is a contribution to what I’ve named borderline-thought, borderline-imagination.

The term borderline has always felt comfortable to me. It’s felt malleable, adaptable, unfixed. And I like words that are difficult to define. I’ve wrapped myself up in my cozy little diagnosis; it’s become a security blanket, tear-soaked and blood-stained, warm and soft and familiar. The diagnostic criteria has offered a problematic but still useful coherence to my psyche. Borderline is paradox and contradiction, noun and verb, forever changeable and in flux. Just like our moods, just like our co-existing selves.

Many folks with Borderline Personality Disorder (BPD) attempt to distance themselves from this term. Some feel confused, conflicted, or even repulsed by it. What’s soft and comfortable to me is sharp and itchy to others; what’s visionary to me seems dangerous to them. For as long as the diagnosis has existed, there have been attempts to rename it, reframe it. I won’t bore you with another list of every alternative name and definition that’s been proposed, but I will say I worry that they oversimplify the complex experience of borderline. I worry that renaming the so-called disorder is an expression of internalized ableism being externalized on those of us who still feel borderline, who still wish to claim and criticize and cultivate borderline. I worry that renaming the diagnosis without more critical thought is a sanitization and sane-itization of the madness of BPD.

For some, borderline makes one flinch, cringe, avoid. For some, borderline feels restrictive, obstructive, rigid. The diagnosis also has a long history of misogyny and saneism, the knowledge and experience of which I carry with me as I nonetheless reclaim it. Still, I love this word, this patchwork quilt of pain and care. I want to hold it, listen to it, and keep it safe.

Even the act of reclaiming borderline risks being viewed as pathological. Merely to have BPD and write about it garners accusations of narcissism and attention-seeking. To discuss pain, to describe not wanting to live, leads to accusations of manipulation.

Sometimes we’re described as lacking empathy, other times as overly empathic. We’ve been described as both over-sensitive and empty shells. We’ve been described as both highly imaginative and creative, both parasitic and self-absorbed.

I want to shift borderline from constricting to liberating, from given to taken, from victimhood to survival, from destructive to creative. I want to acknowledge the spaces between and around each of these words, and resist black-and-white thinking in my reclamations. I want to resist categorization and classification. I want my identities, my feelings, and my dreams to be a constellation or whole cosmology, necessarily contradictory.

I’m reclaiming borderline. This word belongs to me — it could belong to you, too. Let’s dream new meanings into it. I’m using the word borderline with affection, care, and reverence. I want this word, borderline, when I speak it, to conjure emotional sensitivity that sometimes looks like self-destruction, yes, but is also used to create criticism and compassion. I want it to conjure art, care, friendship, and resistance.

What do you want the word borderline to conjure? What do art, care, friendship, and resistance look and feel like to you?

People with BPD often distance themselves from words like manipulative or narcissistic, sometimes going so far as to use them as insults. But I’m fascinated by these particular words, fascinated by what are or are not socially acceptable ways of seeking attention or asking for support; I choose to embrace these words and explore them in my own odd ways.

I don’t wish to distance myself from the so-called negative traits of BPD, but to be honest about my experience with them. In embracing borderline, I acknowledge the unpleasant truths and realities as well. The suffering is real. And these particular words are contentious, I know. So this is not just a reclaiming, but potentially a provocation as well. Because I know those diagnosed with BPD and those not diagnosed might squirm as they read this piece. I’m okay with you squirming, as long as you listen.

Reclaiming borderline isn’t about being likeable. I like unlikeable characters. And I know that I’m not exempt from having caused harm. I’m living a messy, imperfect, mad life. Reclaiming borderline is about inhabiting opposites and multitudes. It’s about resisting the sane gaze. It’s a form of resuscitation and regeneration: anointing words like borderline, and recovery, and [fill in the blank with your own imagination] with new political significance — the way we have with mad, queer, crazy, crip/cripple; the way we’re doing with witch. It’s about locating the spaces between and around hope and futility, and reorienting ourselves.

Having been in and out of mental health treatment since childhood, and in and out of inpatient psych wards about a dozen times over the last decade, and then being diagnosed with BPD more than five years ago, my manifold and overlapping perspectives of how and why I was/am “crazy” are constantly shifting. Today, they continue to multiply. While BPD is often, and rightly, criticized as a form of pathologizing moods and behaviors that patriarchal institutions and those employed by them deem “too feminine” (for example: intense mood swings, a preoccupation with oneself, seemingly irrational behaviors and fears, irresponsibility, over-sensitivity, disturbing and uncomfortable feelings and ideas, rage or jealousy or paranoia that seems disproportionate to the situation, etc.), these are only a small portion of my borderline experience, and it’s also, to me, both a real illness and a valid way of being in the world.

I’ve experienced enough invalidation, either directly while attempting to access care, or through microaggressions and lack of understanding or compassion, both inside and outside of institutions, to know that borderline is a term I must reclaim, rather than abandon. (But as I said, I am not here to tell “the borderline story,” but rather to reimagine what that story could look like.)

I dream of borderlines — those I’ll know and those I’ll never know, those I’ve known and not known simultaneously — living their lives; I think of borderlines with and without access to diagnoses, with and without access to meaningful and competent care. I dream of borderlines who feel unsure of the word borderline, borderlines abandoned again and again. I dream of queer, disabled, lonely borderlines; crip, chronically ill borderlines; femme, feminist, trans, and non-binary borderlines.

I dream of borderlines who’ve died and who will die, who make a tough and conscious effort to stay alive each day; suicidal borderlines, artists, witches, weirdos, writers; borderlines who are out and borderlines who are not, alcoholic and sober borderlines, sensitive, crazy, hysterical borderlines; self-destructive and self-creative borderlines, shy borderlines, healing borderlines, borderlines who work and borderlines who can’t and borderlines who don’t want to. I dream of borderlines on social assistance, medicated and unmedicated borderlines, neurotic and psychotic borderlines, uncool and unpopular borderlines, survivor borderlines . . . and all us whose identities are overlapping, locating ourselves in the opposites and intersections.

What does it mean to identify with a diagnosis when the “goal” of “recovery” is to no longer qualify for diagnosis? What does it mean to be diagnosed with a condition that, for decades, if literature was available at all, was often — and sometimes continues to be — about how to eliminate us from your life, how to divorce us, how to recover from us, how to treat us, and how to no longer be us?

What would it mean to make borderline a desirable place to be? Is it resistance to pathologization and medicalization that compels one to resist the current borderline label, or is it internalized ableism and sexism?

What does it mean that so many of us are living in circumstances that feel unbearable? What does it mean to recover with borderline rather than from borderline? What does it mean to recognize there’s nothing inherently wrong with borderlines, but everything wrong with the cultures and systems we’re expected to endure? What would it look like to be able to talk about suicidal ideation without being called manipulative? What does it look like to resist the sanitization and sane-itization of mainstream narratives of BPD? What does it mean to not want to be post-borderline or ex-borderline? Can we reclaim borderline while resisting pathologization, ableism, classism, misogyny, transmisogyny, transphobia, and queerphobia? What would it mean to imagine, and to become, borderline elders with mad histories and lineages?

I want not only to provide hope, but to reimagine, reinterpret, and redefine recovery, healing, coping, creating; to renegotiate diagnostic language, and the inherent -isms and stigma contained within medical and diagnostic terms; to resist narratives of battling and overcoming and transcending and triumphing. I want to share my process and continue moving beyond stereotypes of BPD while acknowledging the times when I’ve knowingly or unknowingly conformed to particular stereotypes.

I want to claim borderline again and again, to move through my own preconceptions regarding what it means to be a borderline, what I might be capable of. And I wish to capture some of my visions in words, and encourage other borderlines to dream with me.