Three years ago, I wrote a piece called Through the Screen Door. It was written from a hospital bed, during a long admission that seemed to have no end in sight. Hope felt next to non-existent. I didn’t believe that I would ever get better, or be able to build the life with Kathryn that I had imagined.

That post was about picturing kids playing in our backyard, knowing that some day Kathryn and I would be raising those kids together. It was about imagining a time when mental illness wasn’t the driving force in our daily life, and about using all we had learned through my illness to teach little ones to live with hope deep within them.

We had gone to a fertility clinic earlier that year for an initial consult. We had also spent long hours researching and talking about the pros and cons of anonymous vs known donor sperm. We had not set a specific timeline in motion, but we were well on our way to beginning to grow our family. I remember Friday nights spent wondering how much sperm was being tossed away in houses all around us.

I’ve wanted to be a mother since I was little. Probably since I knew that babies came from mommies’ tummies. I was the girl eager to babysit the neighbours’ kids, always volunteering in the nursery at church, enraptured by the pregnant women and babies that seemed to constantly flow through our community. I remember my grade one teacher, who had gone on maternity leave, bringing in her newborn infant for the class to meet and trying to get as close as I could to see the tiny one’s eyes, her lips and fingers. I was the little girl that imagined my wedding and picked out my kids’ names long before a healthy relationship was ever a reality in my life.

So when Kathryn came along and we got married, it seemed logical to start planning for kids almost immediately. I had a new motivation too – I desperately wanted to see her be a mother, and see aspects of her reflected in our children. I was in love with this woman, and couldn’t wait to nurture her through pregnancy and care for a child together. I probably would have agreed to pregnancy on the honeymoon if she was up for it. It’s a good thing she’s more practical about these matters.

But she was on board with planning for kids within a couple years of the wedding. She had never imagined getting married before she met me, and couldn’t imagine herself as a parent until I showed her what I saw in her. She developed a unique bond early in our relationship with my then ten year old niece. As more friends began having children, she too started to catch the baby bug. It was incredible to watch how children were drawn to her very laid-back approach. Even kids deemed timid eventually found their way into her lap.

And when that long year of hospitalizations came in 2014 and interrupted all our plans, it was painful for both of us. When our second niece was born that fall, my heart simultaneously burst and broke each time I watched Kathryn hold her, care for her, play with her and teach her things. I was so amazed (and still am!) at all the potential in her small body, at everything she had learned each time we saw her – to lift her head, or make eye contact, or roll over. The first time she said our names my heart melted.

But it wasn’t our time. I was ill, and getting better was the priority, and although it was the wisest thing to put off pregnancy-planning, it was still painful. So we actively imagined the future in order to build hope, we put the building blocks together piece by piece so that one day, it would be our turn. We bought a onesie and a teether together as a promise to each other that although the time was not yet, it would be.

Those items have been sitting in our cabinet next to my childhood stuffed bear and Kathryn’s stuffed lion for three years now.

And this spring, after a lot of processing with Kathryn and my therapist, we made the decision to let go of that promise. With the recent relapse of my illness came a realization that we may not ever be able to promise each other the stability that raising children would require.

A few people we have talked to have said, “you’re still young, you will change your minds.” Others have assured us that I won’t always struggle this way, that we can and should look forward to long periods of wellness. It’s also true that lots of people parent, and parent well, with mental illness.

There are a lot of reasons why we’ve made this choice, but here’s the key – even if I could guarantee five years or ten years of stability, the chances that at some point a deep struggle with suicidal ideation will re-emerge seems very likely. I’ve been dealing with suicidal thinking since middle school. And it seems that every time I finally begin to say I am free of the torment, it comes rushing back in to defeat me. I am not willing to put a child in a position where suicide is introduced to them as a way to cope or escape. It’s so fucking hard to reroute that neural pathway. And the stakes are way too high.

In some ways Kathryn has had an easier time accepting this new reality. Of course she has grieved through this process as well. But her world didn’t shatter the way mine initially did. It’s possible that part of the reason is because she had begun to question our plans earlier than I had. She says that her only desire is to have a fulfilling life with me, and that she’s spent a lot less time defining what that means to her. She also didn’t spend her teenage years imagining nursery colours or reading parenting books.

The message of a woman’s role as mother has bombarded me daily through this entire emotional process. The movies we watch, commercials on television, comments from others, and our own damn hormones all seem to reinforce motherhood as the ultimate definition and purpose of womanhood. I weep with all of you who have been accosted and accused by these messages. You aren’t alone in your grief, for whatever your reasons. We’re learning to sit with it too.

I don’t expect others to fully understand our decision. It’s true that things may change in the future, this isn’t written in stone. For now, for us, we decided we had to get to a point where we were okay with not being mothers, that our lives would not be defined by that role. And accepting that has been its own step toward hope. We’ve had to reimagine our future together. We’ve had to take apart all those pieces in order to find out what we have left to rebuild a new life.

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.

Screen Shot 2016-12-16 at 4.33.49 PM

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.

World Down Syndrome Day 2017 passed on March 21st. This day of celebration and raising awareness is organized by Down Syndrome International to give voice to individuals who aren’t often heard in the mainstream. Although there has been increasing advocacy in Canada for education, opportunities and jobs for people with Down Syndrome, there is still a need for strong advocates who will help others listen to them and work alongside them to build a more equitable society for all people, both with and without disabilities.

My friend Brian Sloan is one such individual. I met Brian when I worked at L’arche Hamilton in 2010-2011, where he shares a home with other core members and the assistants that support them. My wife and I have remained close friends with Brian ever since.

Brian was born with Down Syndrome, a developmental disability caused by an extra chromosome. Down Syndrome can affect a person’s development to a variable degree – some people with the disorder live a very normal life going to school, working at a job and living independently. Others require more assistance.

For Brian, who is in his fifties, he learned from an early age to depend on non-verbal forms of communication and never developed speech. Had he been given some of the opportunities, support and resources that are now available to young children with Down Syndrome, this may have been different, but we’ll never know.

What’s more important is that Brian’s lack of verbal skills does not hold him back from developing close relationships with friends and communicating his desires and emotions. If you ever get a chance to visit Brian, you will instantly discover his incredible ability to help you feel welcomed into his home – most likely by taking your hand and suggesting you spend some time colouring with him. He can be quite convincing and his joy as you colour together will show you the worthiness of this often overlooked pastime.

My friendship with Brian has taught me so much about non-verbal ways of communicating. He uses a moderate number of signs, mostly for activities he enjoys, people in his life, and of course, his favourite foods. But his eyes and his smile communicate so much more than words. I know this when he pulls me close for a hug, when we relax on the couch colouring together, when we’re dancing and laughing along to music, and when I sit with him in silent prayer.

Brian has taught me more about friendship, presence and joy than eloquence could ever express. I forget my fear of judgment when I’m with him and I learn true acceptance of myself and others by his example. He helps me remember that all the ways I communicate with others are important, not just the words I use.

Thank you, Brian, for teaching me language beyond words.

I don’t usually do much for Lent other than think about what I should/could/would do. But this year there’s something stirring deep down. A need for silence.

My brain works in a furious rush sometimes, and most of my life is filled with incredible life-giving moments, but sometimes the energy of those moments keeps me up at night because I just. can’t. shut. off.

My brain and my soul need a break. And I need to practice quiet.

I told someone yesterday that in grade nine a science teacher asked me to stop putting my hand up to answer questions so that other students would be more likely to participate. In grade twelve a teacher told me I take up too much verbal space.

Ya, I’m long-winded. And I’m sensitive about it. Nearly every time we leave a social gathering I ask Kathryn if I talked too much. It’s only just occurred to me in the last few months that I don’t need to (and don’t even benefit from) this compulsive desire to share and record every thought that comes swirling through my mind.

Kathryn’s highest love language is acts of service, and in my desire to love her well, I sometimes need to remind myself at bedtime that it is an act of service not to tell her every thought I have had all through the live long day. And then I have to tell myself it’s an act of service not to tell her I’m doing an act of service. The woman needs some sleep.

So, because of these heart stirrings, and because of a desire to deepen my internal peace, for the next forty days I plan to spend twenty minutes a day practicing external and internal quiet. I will sit quietly and focus on my breath and as thoughts come through my mind I will picture them as leaves on a river floating by, appreciated but not needing to be captured, and I will gently return to my breath.

Silence.

I tossed her collar on the seat next to me. The tags clinked together, and for the briefest moment, the part of me deeper than logic believed she was there.

How many car rides have we taken together? My Pavlovian response to the sound of the tags wanted to believe this ride was the same.

It was too early to go home. The sun had not fully risen yet. It was too early to walk through the front door without her. So we went to the water, her spirit-still-alive and I.

This was our stormy place, our late night thunder showers and whipping winds screaming place. This was where I could let my emotions rage with the storm.

But this morning, oh how different. I’ve never seen the water so silent. How far could I see and still make out the stone shapes on the lake bottom. No wind. No ripples. Clear glass water.

The sun rose and with it, her spirit, high into the daybright sky. I returned home and placed her collar, her red bandana, and her favourite rubber bone into a shoebox under my bed.

Picture 187

Loving Sasha
September 1998 – January 2010

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