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I sit here contemplating the design of this psychiatric emergency unit. The psychiatrist has told me he won’t be admitting me. He said I have a history of being resistant to treatment, and that for people with Borderline Personality Disorder (like me), admission often fails. He’s not the first psychiatrist I’ve heard this from. Stigma still flourishes even among mental health professionals (sometimes most among the professionals). He tells me this while I am literally begging for help. My wife, in tears next to me, voices her own deep fears of the possibilities that come with the depth of this illness anytime I’m alone, while she is at work or sleeping.

He can’t send me home because I’ve stated I’m acutely suicidal. Perhaps, by leaving me to wait for long hours at a time, he is hoping that the design of this place will drive me to claim ‘sanity’ so that I will ask to go home. That way he can be rid of me, with a pat on his back for helping the hospital avoid a costly admission. I recognize this is likely not a conscious plan in his mind, but still am not convinced he hasn’t been trained to respond in such a manner as ‘best approach.’

So I sit here while other patients pace the halls screaming in their own terror and delusions; every footstep, every voice, every set of keys echoing through the empty rooms and hallways. The smell of piss saturates the poorly circulated air. There are no windows, only dingy beige walls marked by the aggressions of others, and heavy doors, almost all of which are locked. I lay on a mat on the floor of an almost empty room (if you have a family member with you, they will give you a chair). The sheets are often stained with what looks like blood and the flourescent lights blare unkindly.

A doctor comes sometime between four and ten hours later to see if anything has changed, if I now want to go home. And damnit, I want to go home so badly – to my own bed, to a clean toilet, to a place with hand soap and towels. Apparently even hospital grade non-alcoholic foaming hand sanitizer is to big of a risk for patients like us. So we take our chances with C-difficle, MRSA, and whatever else others bring in with them. Germaphobia does not combine itself well with other forms of panic.

Yes, I desperately want to leave this place. But I remember my promise to Kathryn, my desperate need for help and my inability to manage the fireball of emotions on my own. In one of my most vulnerable moments, I must find within myself strength to stay when my mind is screaming to flee.

So I tell them I’m not safe. I tell them about the racing thoughts and crushing pain. When asked if I will hurt myself if I am discharged, I answer with an honest yes.

The doctor leaves and says someone will come back “soon” to reassess me. I lay back down not knowing if my wish is for sleep or death. In the room next to me someone starts screaming again and inside, I start screaming too.

This must be hell, coming here is its own form of suicide.

The Bear, Part 1

Death consumes me.

I am fighting a bear that is 1000x stronger, 1000x more vicious than me.

They tell me to be brave, to have hope, to take one moment at a time.

I believe the voices that say I am stronger than him.

I tell the bear and he laughs and grows 100 more teeth to rip at my flesh.

He stalks me while I do the things that show that I’m still alive – while I put on clean socks, while I brush my teeth, while I try to sleep.

My death would mean less to the bear than a mosquito does to a windshield.

I beg the bear for a merciful death, for release. I can’t remember why I try to flee from him.

He does not show mercy. While he hunts me I can no more choose to die than I can choose to live.

The Bear, Part 2

Who is this bear that stalks me at night when I am alone, when I am most exposed?

Perhaps he is chemicals and broken synapses in my brain. A hallucination caused by disordered biology. I swallow the pills that they tell me will tame him.

Or, he is a loud roar, no more of a threat than the rolling thunder at night. A desperate cry composed only of Fear. Like dark clouds dispersed by a strong wind, he is quieted to sleep by their assurance that dawn will come and Love will Win.

Or, he is a fragmented part of me, a distortion in a fun house mirror. I invite him in, so that both he and I can become more whole.

Or, he is the escape I hold on to when being alive means experiencing pain. The dark shadows projected against cave walls intensify the size and threat of the bear. I have rejected my own nourishment so that he can grow stronger. I have given him more power than he deserves. When I call for help, the Universe answers with Light to help me see.

The bear and the terror are real. The struggle and the wounded flesh and the monstrosity of feeling caught between life and death are real.

Yet, even as he hunts me, I sharpen my weapons. I find strength left like bread crumbs by those who have been chased by their own bears. I reach through the isolation; my community is my arrows. I scratch my words into rock faces; my  voice is my spear.

I am hunted by him, but night by night I learn more of his secrets. For tonight, the bear and I will rest.

I am still alive. I can choose to live.

Stigma often places the blame of mental illness on the shoulders of those who struggle.

Resources are scarce and the system is overwhelmed.

We are expected to fight our way to wellness in a society that breeds anxiety and despair.

Those of us who are most sensitive are like canaries in the coalmines, but instead of others heeding our warnings, we are expected to adapt ourselves to the poison all around us.

I am a vase full of pain.

Every crack leaks pain out over those who are closest to me.

I want to destroy the vase and end the pain.

But it would spill out over everyone I love.

My sweet wife carries scars that are not hers. When the monster of mental illness grows strong within me, all too often Kathryn becomes its target. When I can barely keep myself alive, the monster feeds on her to destroy us both.

And still, she is here. Firmly by my side as the monster rages and whispers and crawls inside my skin. For the life of me I don’t understand why she stays. Her stated reason, “because I love you,” sounds like a foreign language, an echo I remember was once native to my own tongue.

She could wake from this nightmare, break free and leave the monster and me to live or die alone. But she stays, endlessly spinning the monster’s battles into a dance, a painful turning, full of the fear of losing me to the monster, the guilt of not always knowing the steps, and the worry that she’ll say or do something to make the monster hungry again.

The dance is slow, dizzying and lurching, our feet falling from under us. But she keeps dancing, pulls me into her, gathering my ragged emotions to her chest, my restless hands to her hips, my screaming and racing mind to her neck.

And for a few moments I forget to fear the monster. I forget the terror to flee and find instead the safety of embrace. A soft rhythm moves from her hips through my bones and together we sway like the river grasses against the coming storm’s wind. And maybe, for a fleeting second, I remember the distant call of playfulness, of silly laughter and simple gratitude and quiet peace. And I remember to breathe.

I remember to believe. With two hearts and eight limbs, our insightful minds, and abounding love, we will keep dancing through the panic till our blistered feet, aching bodies, and pounding skulls carry us away from the monster’s reach to a place where we can rest tangled in each other’s skin, waiting to learn whatever music comes to us next.

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Painting by Karis Kazuko Taylor

*”Dancing through the panic” is a reference to Leonard Cohen’s song Dance Me to the End of Love.

 

Having Borderline Personality Disorder sucks a lot. The struggle and pain of it all is so intense sometimes.

But I’m also discovering the gifts of highly sensitive emotional people.

  • We are naturally empathetic and compassionate
  • We are able to have deep and authentic relationships
  • Our joy is contagious and can be found in the simplest of things
  • We can’t ignore the pain and injustice we see around us
  • We make great artists and storytellers.

I’m glad I’m still myself with BPD and that having intense emotions isn’t inherently a bad thing. Emotions are signals that help us understand what is important to us, what we need in each moment, and how we relate to the world around us. I’m grateful for my emotions, even the sometimes really painful ones, because of who they make me.

I feel mixed about #BellLetsTalk today. Is it a start? Yes. Is it enough? Hardly.

We need a lot more than just talk. We need practical ways to support one another through times of crisis. We need to teach people emotional coping skills (preferably as children). We need actual answers to why our brains sometimes go off kilter. We need medication that isn’t just a guessing game and that so often comes with heavy negative side effects.

I’m not the only one I know who feels frustrated hearing “if you feel suicidal, reach out and talk to someone.” Friends and family can only do so much and find it very frightening and overwhelming. And crisis lines and emergency psychiatric services aren’t much better. Generally you get held until the intensity of the moment passes and you’re sent home, maybe to follow up with your GP. You’re alive, yes, but the root of the problem hasn’t gone anywhere and you might be less likely to reach out next time if you feel there is no hope of actually feeling differently, not just being forced to stay safe.

There isn’t a whole lot that can be done to get to the root of why some people feel suicidal so often (or even just occasionally) unless we have more funding for research and adequate treatment. Far too many people are given 6-8 weeks with a therapist or psychiatrist and that just doesn’t cut it.

The wait list for DBT (the recommended treatment for Borderline Personality Disorder) in Hamilton is now over a year long. And while DBT services are expanding, its not nearly quick enough for the number of people being diagnosed and referred to the treatment. It is available in just a handful of cities, meaning hundreds if not thousands of people who would benefit don’t even get a chance. For someone who is acutely in crisis, suicidal, impulsive, behaving dangerously and feels like life is intolerable this is NOT acceptable. We need funding, and that doesn’t come from just talking about mental illness.

Bell Let’s Talk seems to focus on anxiety and depression. Yes, we need to talk about those – but we also need better understanding of schizophrenia, eating disorders, bipolar disorder, personality disorders, and so many more. And we need to understand the complexities of mental illness, abuse, addiction, poverty, gender and race. It’s not just rich white people who struggle. And far too often the people who need treatment the most can’t afford the costly private services available and have to wait on the long waitlists.

I am so grateful to have what many others don’t – a support system I can fall back on, a net to catch me when I need it. And the resources to pay for the treatment I need (with the support of my family). What about those who don’t have either of these things? How can we expect them to reach out if we’re not reaching back?

Ultimately, awareness campaigns like Bell’s leave me desperate for so much more. My friend Kathleen said it best, “No one should have to bombard social media with free advertising for a corporation to get basic health care from our government.” Mental health care is basic health care and we need to start providing better services now, and that takes more than just talk.

If You Feel Too Much

Jamie Tworkowski, founder of TWLOHA

If you feel too much, there’s still a place for you here.
If you feel too much, don’t go.
If this world is too painful, stop and rest.
It’s okay to stop and rest.
If you need a break, it’s okay to say you need a break.
This life – it’s not a contest, not a race, not a performance, not a thing that you win.
It’s okay to slow down.
You are here for more than grades, more than a job, more than a promotion, more than keeping up, more than getting by.
This life is not about status or opinion or appearance.
You don’t have to fake it.
You do not have to fake it.
Other people feel this way too.
If your heart is broken, it’s okay to say your heart is broken.
If you feel stuck, it’s okay to say you feel stuck.
If you can’t let go, it’s okay to say you can’t let go.
You are not alone in these places.
Other people feel how you feel.
You are more than just your pain. You are more than wounds, more than drugs, more than death and silence.
There is still some time to be surprised.
There is still some time to ask for help.
There is still some time to start again.
There is still some time for love to find you.
It’s not too late.
You’re not alone.
It’s okay – whatever you need and however long it takes – it’s okay.
It’s okay.
If you feel too much, there’s still a place for you here.
If you feel too much, don’t go.
There is still some time.

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How can I sleep when I can’t trust my own mind?

It takes me down dark paths, wandering into woods I know I’ve been lost in before.

The constant questing, nagging, demanding fear is this: what if I’m wrong?

What if what I think will help me only makes things worse?

What if this attempt for peace of mind is really just a desperate plea for attention, for a demonstration of being loved?

Am I worth the concern that others show for me when I struggle most with my illness?

Am I just escaping my responsibilities by curling back into illness or I am actually challenging this illness with the hope for better treatment?

Aspects of hospitalization feel addictive – the safety of being surrounded by people, checked on every 30 minutes to ensure I’m not doing something to harm myself.

Nearly every trigger and method of suicide removed, a near risk-free environment.

Pressure to be productive and responsible and healthy all eased.

An enforced and regular schedule of meals and sleep, all without the challenges of cooking and tidying.

And of course, the outpouring of concern from friends and family.

But what is the cost?

Loneliness and boredom and too much time to think.

All the negative judgments of myself find evidence to support themselves.

I could curl up in this darkness, and just… stay.

Will being here really help me create long-term stability or is this just the start of another cycle of regression?

Am I actually ill or is this all in my mind?

A recent conversation with a friend led me to describe a technique Kathryn and I use regularly when I’m feeling overwhelmed. It is especially helpful when I experience the kind of panic that leads to racing thoughts and quick shallow breathing.

Often this feeling will race out of my body in frantic movements. I might rush from room to room with no purpose, fling pillows and blankets around on the bed, squeeze my eyes and fists and chest as tight as I can, hold my breath until I am desperate for air and start hyperventilating, or flail about in other unpredictable ways. Sometimes I’ve even acted in destructive or intimidating ways because of the rushing surge of panic that flows through me, and of course, this leads to greater problems in the long run.

This is, quite logically, distressing for Kathryn to witness. One time when feeling this way, I stood out on the balcony of our old apartment during a massive storm and let the wind and rain and thunder swirl and panic with me. The image of the wind blowing through the open door behind me and swirling around Kathryn too helped me understand just how this chaos spreads from me to her.

The chaos flows through us both.

She gets overwhelmed by a rushing desire to help me calm down, to ‘fix’ what I’m feeling.  And so she offers solutions – try ice, cold water, let’s go for a drive, just sit for a second, put lotion on your skin, play piano – on and on. She lists mindfulness skills that often help but seem useless to me in these moments. All she wants is to help us both settle, to prevent further escalation, and to begin the process of problem solving the source of the emotion. The real trouble, though, is that in these most frantic moments I seem to lack the ability to grab hold of a coping skill and stay focused. And her hurried attempts to help me calm only heighten my sense of anxiety. As I watch her begin to feel the chaos, guilt only increases my panic further.

And then about six months ago, she came up with a new idea seemingly out of nowhere. “Blow up a balloon.” That’s all she said and then she started doing it herself, imitating the kind of inhale and exhale one would use to inflate a large balloon. She has told me to take deep breaths many times before with little improvement to the sense of panic or my breathing, but somehow this clicked.

Just blow up balloons.

I don’t have to solve the current problem that is leading to the panic. I don’t have to convince myself to feel differently. I don’t have to focus on relaxing muscles or consciously slowing my breath. I just have to blow up balloons. I just have to imagine a balloon in my hand, and try to blow it up. My initial attempts are usually meagre at best, hurried little puffs that would do little to inflate a balloon. But then I take a deeper breath in, and blow again… and then again… and again.

And if I start to turn back to the panic, we just say it again. “Blow up a balloon.” I tell Kathryn the colour. I imagine the shape and how it would feel against my fingers, my lips. I get to the point that my inhaled breath is massive, deep into my belly, and my exhale is long, slow and forced through pursed lips. I feel my chest rising and falling with my breath, and as if by magic, my body and mind begin to calm too.

Calm.

As these balloons get bigger, I relax my breath – the sense of hurry leaves, and I find I am now casually blowing up balloons, no longer as if in a race. The tension in my muscles reduces, my movements slow down, the storm in my mind begins to clear and usually at this point I become much more able to focus on those coping skills and problem solving skills that will actually help whatever situation is causing the sense of panic.

As I told my friend Rob all of this, I realized why the skill works so well. Blowing up balloons is such a simple concept – it’s so easy to connect to it, regardless of a person’s emotional state of mind. And it’s a visual activity, our minds can picture it even when we are just pretending. It doesn’t take patience or a great deal of focus (which is lacking in these moments of panic), and anyone who is being triggered by someone else’s panic can model it, helping themselves stay calm in the process.

Anyone can use it as a skill.

About a week later, Rob, who is a nurse, told me that he pulled over at the scene of a car accident and one of the drivers was in a state of shock and panic. He took charge of the scene, pointed at her and said “Blow up balloons with me!” and demonstrated what he meant. They did this together for several minutes as he assessed her injuries and they waited for the ambulance to arrive on the scene. And somehow, incredibly, it helped.

There is magic in our breath. Grab ahold of yours in a moment of panic. Just blow up balloons.

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