I So Love The World

I’ve been listening to this song this holiday season. It’s the story of Bethlehem, in a modern setting, refugees seeking a safe place to call home.

It makes me lonesome, and at peace, at the same time. You see, I think I’ve been seeking some sort of refuge myself, for the past five years since my separation. It isn’t the same – it isn’t war. It isn’t utter poverty. It isn’t drought. But it is displacement. I’ve been learning how to rebuild. And so many, many people the world over have to learn this, have had to learn this so many times in so many places for all sorts of reasons. Some dire. But for many, it’s more commonplace. We all lose dreams, at some point. I’m learning not to dwell so much in the loss, but to appreciate what I’ve achieved, what I’ve won. I’ve won peace. And freedom.

My friend, who I met several years ago at a support group for survivors of violence – where I learned what psychological violence is, and that yes, I did belong there in that group of grieving, healing women – saw me yesterday. She saw me. She understood the feelings I am struggling with, regarding whether I can ever really love again, she understood my fears and my fierce protection of my space and time and autonomy. How trust is not a thing easily given, or once lost, ever really regained. She gets it. She has so many of the same scars too. She’s not ready to date, and I admire that for her, even am a bit envious of the differences in her life. How she has full custody. How she is able to blame, and name, and thus move on. Mine, in contrast, is not a story of good-guy-vs-bad-guy. So it’s not so easy to blame. Mine is a story of addiction and mental illness and trying too hard. Not believing in myself enough to walk away earlier. Wanting the future I envisioned so much that I couldn’t see the present that I had. Eventually his mental illness clashed up against mine, and a life-saving choice had to be made. Mine is a story of sadness, and making the best of what’s left. And my friend meets me there, she sees this, she sees me. And she reminded me of what I do have, now. The peace of not worrying about explosive rage – at least, not when my moody teenage son isn’t around. The quiet of a home free from endless debate and opinions and mockery and questions. The freedom from having to soothe tempers and resolve conflict and anticipate and prevent anxiety or constrain the need for control or believe anyone else’s version of reality. Release from isolation. Relief from a constant state of vigilance, every word, action, decision monitored and judged and found lacking.

And so I am thinking about refuge. About what that means. My Christmas tree this year is leaning, from the weight of handmade ornaments I’ve accumulated. That first Christmas, there was barely a handful, on the spindly deciduous tree I’d intentionally chosen, determined to make new traditions instead of just replacing what I’d left behind with copies of the same. And now, five years of rebuilding later, it’s time to either start giving some ornaments away, or buy a bigger tree. This, this is refuge. A new tree, waiting with empty branches, with hope and certainty that they will be filled. And they have been. Slowly, one new memory at a time.

This TED Talk I’ve been thinking about talks of psychological health. It talks about how we need to take this more seriously. How we need to protect it. How much more we value the body than we do the mind. It speaks of how loneliness is defined as how much you feel disconnected socially or emotionally from those around you. Failure also wounds you psychologically. As does rejection. Practicing emotional hygiene means working on your self-esteem, so that you are less vulnerable to emotional pain. It means tackling your rumination habits. It means living in the now, instead of the past (depression-oriented) or the future (anxiety-inducing). My sister likes to remind me that I’m the most cheerful person she knows. Which makes it hard for her to acknowledge my depression, or what I’ve been through. But it also compliments me, as cheerfulness is something I’ve chosen to consciously pursue, as a resilience characteristic, something within my reach, and within my control. My mood is generally not within my control. But my response to it is. And so, I can take my deep psychological wounds, examine them, and choose to address them. Yes, I still feel that deep loneliness, separated not just from my ex and my past, but also from many of my friends who simply don’t live anything that resembles my life. They don’t understand how I can’t identify with their complaints about their husbands not taking on enough of the childcare or housework, or how I can’t tackle my mountain of debt by kicking a latte habit, or how monitoring my kids’ screentime isn’t my biggest parenting challenge. They don’t understand my envy that one of my friends, after suffering a burnout, has chosen to freelance and contract from home from her easier and marketable skillset rather than going back to the tougher work she had been doing in a toxic environment. I admire and honour her choice. But I also wish I had the freedom to make it, too. She has a husband for a safety net, and no young children she has to house. Her work is now simply to recover, not my double duty of both recovering and preventing. But, I tell myself that I will get there too. Someday, my children will be grown and I will be able to downsize and get debt-free. I will be able to let go of a paycheque too. I will have the freedom to write full-time too. I’m practicing healthy self-talk like this, self-coaching, learning to be a better friend to myself. That helps more with loneliness than most social activities I pursue, and it helps me enjoy those that I do pursue more, because I can be fully present, instead of silently criticizing or doubting myself constantly in my head.

And in the meantime, while I wait to get to retirement when I can actually practice the pace my mind and body need, instead of contorting myself into a pace I can barely sustain, I am moving forward with my plan to make and sell some art prints. I’ve had to put this plan on hold in order to save up for the up-front costs of my printing, but Christmas has been kind to my art nest egg. So this one piece of my future is now no longer something I have to wait for. I can claim this for myself, get my art out into the world in a bigger way than just Instagraming it. This is a big step towards healing my sense of failure, of rejection, of building up my self-esteem. Reframing myself. I was an artist before I met my husband, before I had kids, before I began my career. It has been my outlet, my source of comfort, my therapy my whole life long, through every depressive episode and in between. It’s time to set some of it free to go live a life of its own out in the world. Someone somewhere might need to have the results of some of the lessons I’ve learned up on their wall.

I’m approaching my home in the same way. Choosing to make it the home that I want, not just the house I made my escape to. Not just the safe space it is, not just a refuge, but a loved space. A home. One small change at a time. A couple of years ago, I planted a pear tree in my yard. I harvested my first (and only) pear from it this summer. This coming Spring, I think I will try propagating a new tree from a cutting from its branches – I’d literally be branching out. I think I’m ready.

Refuge means so many things. Shelter. A safe place. A chance to take stock, find your feet again, recover. But at some point, we must move on. Refuge is only ever intended to be temporary. Relief. Now, I need more. And this, needing more, is itself an amazing sign of progress. It means I want more from my life – I want to build a life that isn’t just free from the psychological violence I’ve experienced, but that is full of love. Of happiness. Of many small and daily joys.

I heard that refuge song for the first time performed live for me by The Good Lovelies at the National Arts Centre in Ottawa, as a Christmas gift to me from my sister. The song talks about unfairness. I’ve learned not to look for fairness. But instead, like the song says, to wear my walking shoes, to ask the gates of hope to let me through. We can all choose to carry gifts of gold. To love the world.

At that concert, these three glorious women sang to me. They’ve been singing to me for years now – I discovered them, thanks to CBC Radio 2, after my separation, when music was often the only thing getting through to me. Music was mine. It was something I could hold on to, I could identify with, I could choose, that was free of my tarnished past or any manipulation. They’ve sung to me in the car, in my lonely kitchen, when I was on my knees sobbing in the shower. They’ve reminded me that no one gets more than they can take. That everything’s going to be alright. When they sang to me at that concert of seeing gold, of the shapeshifting I’ve done, of the heavy lifter that I am, tears dripped onto my lap. Tears of acknowledgement. Tears of knowing.

Every one of us has the choice to live the life we want. Whether we can change our circumstances or not. Whether it takes too many years to change those circumstances or not. We can choose to value the health of our minds as much as that of our bodies.

My Winter Solstice / New Year’s resolution this year is to establish a daily yoga practice in my life. Even if it’s only one stretch. One sun salutation. One breath. It’s OK to start small. But steady. To embrace my inner yogi, to make the time and space to breathe deeply every day, to remember the sacred being that I am, who I am at the core, beyond all the needs and demands and requests and questions and whinings and tasks, and especially, beyond the past. This is the life I want. A life full of music, art, laughter, yoga, health, love. A home, not just a refuge. Messy, and mine.

There are things to celebrate

I think I’m starting to unfog. Thaw. Shake it off. Whatever.

I’m starting to feel what I’d like to claim as normal. Where I have enough energy to not just get through the day – I still have to drag myself out of bed, I still stumble my way back into it for at least one nap a day – but where I have enough energy to actually enjoy parts of the day. Enough energy to actively live. To feel alive.

A slight medication adjustment is the cause, of course. Along with increased side effects to manage, also of course. I wish I could say it was because I started doing some new self-care thing, or that I’d had a life-changing epiphany, or that I’d started some new exercise or diet or something. But no. This somewhat improved outlook on life is all chemicals, Baby. I count my lucky stars that they work at all, so I’m not knocking my psychopharmacological wealth. Meds work. My meds work, at least, for me. After 4 and a half years of constant changes and adjustments and micro-dosing tweaks. It’s not an easy answer, but I’m grateful that there’s any answer at all.

My friends at the ESDC Innovation Lab recently hosted an amazing-looking “Minds Over Meals” session, discussing self-determination. (Which I sadly had to miss – darned overly-full life!) Self-determination is the theory that all sense of well-being in life can be distilled down to, or built up from, three things: autonomy, competence, and relatedness. “Across a wide variety of groups and contexts, satisfaction of these three basic psychological needs improves our ability to achieve our personal goals, helps us adapt in the face of difficulties, increases our sense of happiness, and enhances the quality of our relationships.”

Autonomy, I’ve got down pat. Single mom, charting her own economic and relational and health path – this, I know I’m good for.

Competence, I’ve had recent reminders from both work and parenting that I’ve got this one covered too, though my sense of self-worth needs some improvement, and there are constant reminders of other needed improvements. Teens are good for keeping parental humility in good working order. Thankfully, though, some 6-year-olds are still hero-worshipers.

Relatedness, I’m working on. Mostly, I’m working on my boundaries. Knowing my limits. Asking for what I need, even if (especially if?) that means being left alone.

So, if I’ve got the three psychological essentials reasonably well-managed, and I’m doing every self-care physical wellness thing I can possibly fit into my budget and into my day, and I’ve got some darn good cutting-edge drugs and a very engaged, creative, supportive doctor helping me develop my cocktail – then all I’ve got left to tell you is that no matter how well you manage it, when your plate’s overflowing, something’s going to splat onto the floor.

Consistently, for me, and for so many other parents of youngish children I know, the thing that takes it for the team is my wellbeing. By the time my kids’ needs are met, work is done, the house is kinda tidy and there are some clean and dry clothes to wear the next day, there isn’t any me left to take care of me.

I started going downhill in this latest depressive episode in mid-July. And I started coming back up for air in mid-November. Perhaps this could have been shortened if I hadn’t missed a 10-minute appointment with my shrink in late August due to a calendar malfunction, and thus had to wait 2 months to get back onto his roster. Perhaps not. We’ll never know. Regardless, 4 months is a pretty normal duration for a depressive episode for me – I certainly haven’t had one be shorter than 3 months in the last 5 years.

The constant challenge, especially for someone with bipolar traits, is not overdoing it, when that energy that’s been so noticeably lacking starts coming back. Spoon theory is useful, here. One of my partners likes to joke about how many knives I am getting myself poked with, too. Financial stress from needing to balance out the income lost from disability over the past five years with a debt repayment plan that may or may not get balanced out before I retire, with the added bonus of not knowing when that might be due to potential forced early retirement from same said disability, is a useful description of a knife. Just because a medication change may temporarily give me an extra spoon or two, getting stabbed with an extra knife or two at the same time kinda negates the gain. Another knife is the need to constantly do SO MUCH self-advocacy about my conditions, most especially when it is most hidden, such as when I get a temporary reprieve like this shifting of gears out of acute depression into potential, and temporary, recovery.

“We don’t have the energy to be battling healthcare providers for our dignity,” says this illustrative article on coping with an invisible, chronic illness in a system that denies its validity. But, as my 6yo demonstrate bluntly for me recently, we do need the energy to have to battle our friends and family. “Why were we late to school so much last year, and this year we haven’t missed the schoolbus a single time?” (Thank you, oh thank you, my Darling, for noticing.) And so I explained to her how until last Spring, I had been battling chronic sleep deprivation as one of my trade-offs for a an employability-level functional brain.

So, with my new, slight increase in energy, the trick is to use the gain in a way that will ensure its sustainability. Enter fork theory. So, instead of taking on more files at work, which, of course, is what work (and my excited brain) would like me to do, or catching up on my sorely neglected house, which is what the voice in my head that sounds like my mother would like me to do, I have to use my new spoons on gathering forks. Finding my flow. Using my energy to invest in those things that will either reduce the things that drain me, or increase those things that fill me up (okay, now I’m getting into bucket theory! Oh, the theories!), so that I can increasingly dig in. Highest priorities for self-care investment for me these days is financial management and going to the gym. After being rejected for loan consolidation from the bank last month, I’m back at it, jumping through hoops to get my credit limits increased and looking into third party debt management options, so that I can pay back-taxes on my constantly fluctuating income. In addition to endless unpleasant phonecalls trying to explain my situation to people who either want my money or who won’t give me more money, last week, I also went to the climbing gym for the first time in a month. The wall wasted no time telling me I had lost my edge. After, driving to book club with shaking arms, I reflected on the sense of calm well-being climbing always gives me, and why it is my most important PTSD and anxiety therapy. In short, it teaches me that there is no room for distraction when you’re trying not to fall off a wall. And that yes, when I need to, it is safe to Just. Let. Go.

In cancer speak, remission is how you describe remaining cancer-free for 5 years. I can’t manage to stay depression-free for more than 6 months. In fact, according to the cancer definition, I’ve not ever hit remission – the longest I’ve ever gone without a depressive episode is about 2 years, and that was before I had children. Also, with cancer, you have a label that people understand. When you’re recovering from surgery from a mastectomy, your family absolutely knows what you mean when you say you don’t have the energy for Christmas shopping and wrapping this year. You don’t get funny looks and the embarassing need to explain why you’re using your trekking pole inside the office when the dizziness is bad. You don’t need to go through two years of medical testing with multiple specialists to have someone take your symptoms seriously. There is evidence. There is knowledge. There is understanding. And, as scary as it is, and believe me, I don’t want one, but there is a timeline. My father, who has cancer, struggles to understand my medication side-effects, which are as powerful, but less-well understood or studied, than his. From his retired, happily married, comfortable Baby Boomer perspective, he fails to see how I’m fraying at the edges to be working so hard to be able to work. When we get together around the holiday table, we talk about his health. We don’t talk about mine.

But still, I’m celebrating, this season, full of spoons and forks and knives, full of both weariness and hope, full of autonomy and competence and relatedness. Full. And that is a beautiful thing.

Why Love Wins

There was a showdown at my house last night. A rodeo. The barely-controlled raging, kicking, flinging, flailing bull was my 12 year old Asperger’s son, complete with teenage hormones, 6 feet tall and over 300 pounds, angry at the world. The rider was me, trying to maintain parental boundaries while also shielding my 6 year old daughter, watching, transfixed, from the very real violence.

Parenting, any kind of parenting, but particularly parenting an autistic teenager, is not a spectator sport.

It’s muddy and messy, noisy, and sometimes, very, very scary.

I managed to get my son out of the house to let out the majority of his rage in relative safety. Only doors and dishes and his own hands ended up bruised. But it was a close call.

After the round was over, there was crying. Wailing. There were confessions of absolutely believed unloveability. There was darkness of the soul. There was full-contact hugging, and hugging, and hugging, until the hug was accepted, and eventually, returned.

There was a calm, after the storm. When everyone was spent. There was an apology. A family dinner. A poker game, with dominos as chips. We made pie. Some semblance, some remembrance, of order.

This morning, he plodded his usual way to the bus stop, his usual self, all volatility gone. Back to normal. He shakes it off, just as a bull does, sides heaving, muscles quivering, back to grazing and twitching ears and tail, snuffling through the pasture.

Me – not so much.

Me, with my PTSD, with my MDD currently in full-on-depressive-episode, with my anxiety/panic only tamed because it knows there’s no safe place for it to express itself right now, crisis mode overtaking, me, I’m numb. Floaty floaty disassociated numb. One foot in front of the other. Fuelled by grit.

A few weeks ago, my son asked if he could go live at his dad’s house. More, or most, of the time. Because, he says, he doesn’t feel as angry when he’s there. With me, with my emphasis on personal responsibility and a love-based approach, he’s lost. With his dad, with his routines, his strict expectations, his rules and structure, his consequence-based approach, he feels more sure of himself. At his dad’s house, he gets to be mad at his dad when things go wrong. At my house, he has no one to be mad at except himself. And he doesn’t know what to do with that. So, upon refusal to change custody arrangements from his father, and mediation between my son and I and his psychologist, my son advocated for more structure and agreed-upon consequences at my house. And thus, me following the exact steps he asked for himself when situations escalate, violence entered my home. Everything I’d warned the psychologist and my ex and my son would happen, did. Everything my approach has been consciously designed to avoid.

The most heartbreaking moment last night came when my son begged me, after, to tell him whether he’d hurt me, in his raging. Because he couldn’t remember. His spiral was so extreme that he blanked. And the only reason he didn’t hurt me is because I was very conscious to stay out of his way, to back up, to leave escape routes available behind me, to keep my body always in between him and his little sister. Advice I’d gotten from autism spectrum experts when he’d been 8, and somewhat nearer my size, when I’d had a toddler to protect and 2 broken bones from my latest bout of my early-onset osteoporosis. Advice I’ve followed. Advice that helped me build my parenting techniques that value safety in my home above blind routine and rules. Advice that my ex has never had to consider because he still outmasses his son and doesn’t break bones when he falls down and has a relationship with his daughter where she doesn’t treat him like he’s a marsupial.

“I’ll never give up on you,” I whispered into my shuddering, sob-wracked son’s ear last night, as I held him tight. “Love never gives up.” Hiccupping, he managed to whisper it back.

“How do you deal with it, Mom?” he asked, later, when calmer, worn out. “The feelings?” I told him I write. I run. I turn to music, to art. I climb until I fall off the wall in exhaustion. I walk, and walk, and walk. I pet the dog. I ask for hugs. But, I also told him that sometimes, I just don’t know. Sometimes I don’t think I deal with it well at all, bottling it up, keeping it inside, trying to seem just fine. He nodded. Diagnosed with his own MDD, he gets it. Sometimes there is no dealing with it. It just is.

No parent ever knows what they signed up for, when that new life arrives into their lives. I sure as hell didn’t expect this – to be parenting two neurodivergents, in the midst of my own disability issues, alone, both my parents and my sister each dealing with their own health issues, their own lives, with no energy to spare to help with my kids, with my co-parent actively undermining me as well as negating that any of the 4 of us has any issues at all. I didn’t see this coming. Last night’s tension, yes, I saw that coming, after much harsh experience. But I didn’t see this, year after year after lonely year, this chronic battle of battles. Each one harder than the one before.

It’s a good thing love never gives up. It’s a good thing love wins. It wins because it has to.

It has to.

A Day In The Life Of

It isn’t pretty.

It isn’t all that noticeable, either.

Humdrum.

Bleakness.

Bleakness isn’t black. It’s just dreary.

Damp.

Heavy.

It isn’t pretty.

But it is, mostly, unremarkable.

I get by.

I say my good mornings.

I mumble, and smile, briefly, while getting a cup of tea.

I can still drink the tea, and taste it, or at least the warmth of it, so that’s something.

Mostly I manage to eat. Enough, anyway. Not so’s you’d say I enjoy eating, but, at least I still can. Sort of.

I can walk.

Dreamily, with a bit of a stumble.

But I can walk.

Sometimes even with my head up enough to see the trees, notice the sunshine.

It isn’t all grey.

Just mostly.

But it isn’t pretty.

Soldiering On

I went for a long walk the other day.

With some running mixed in. And some limping.

I did my second half-marathon in the Army Run, in the disabled, ill and injured category.

It’s a big deal to me, walking up to that start line, and stepping over the rope, and taking my place next to other Canadians who have given some permanent part of themselves in service to our country. My disability is invisible almost all of the time. The fact that I earned some part of it as a civilian in support of military work is even more invisible. But that day, at that start line, for a few moments, it was seen. And I stood, being seen, with pride.

After, lying down after my long day, my legs were abuzz with electrical currents, my arthritis was alive with throbbing in knee and hip, my shoulders and neck ached with tension from using my trekking poles as needed mobility aids for hours. But I looked at the pictures of myself, before and after the race, and all I could see was triumph.

“Some day you will no longer be able to do this,” one of the encouraging handmade roadside signs said. “Today is not that day.”

And, once upon a time, I wasn’t able to do this. Not able to believe in myself enough. Not driven enough. Not dreaming big enough.

But, a decade ago, I ran my first 5K. And now I’m up to 21.1K. One day, a triumphant day, it will be a full marathon. But, you know, it’s not really about distance. In my case, it’s most certainly not about making a good time, or even beating a previous time. It’s about finishing. It’s about doing it. It’s about showing up.

When I started to do the work that led to me developing PTSD, I had no idea that I was doing anything at all difficult. I was just doing a job. Not even my job – something came along, and they needed some people to do it, and my team seemed suitable, and I was available. And soon, this work took over. And then it took over me.

I asked for help, but none was available. I asked to stop, but there were deadlines to meet. I asked to be reassigned, but I was the best one for the job. And the job needed doing. So I did it. Until I stopped being able to sleep, from the nightmares. And I stopped being able to eat, breathe, think, quite right. And I saw a counsellor. And got a diagnosis I couldn’t quite believe.

I didn’t know you could get PTSD from a desk job. I’ve never been in the field, in Theatre. I’ve never been a soldier. I always figured the worst injury a policy analyst could get is carpal tunnel. Tennis elbow from frenetic mouse-clicking. Maybe a bad back from sitting all day.

I also didn’t know that PTSD never really goes away.

So, standing at that starting line, next to wheelchairs, is a very big deal.

I always feel like a fraud. I haven’t lost any limbs. But then I remind myself of what I live with every day. Alone. Without any of the supports available to soldiers, to military families. Without any workers’ compensation, because my workplace at the time also didn’t know you could get PTSD from a desk job, and it was vastly more important that I get out and heal than it was to fight legal battles that weren’t going to help me in any measurable way. And, standing at that start line, in silence, a crowd of thousands standing at my back, also in respectful silence, I remind myself of all the other people with invisible disabilities who can’t stand next to me. Because they don’t have the strength, because they haven’t healed enough yet, because they don’t believe they should.

I’m one of the lucky ones. I’ve mostly healed. I still have nightmares, I still startle way too easily, I still have to manage my panic every day. But it is manageable.

Now, a few days later, my body has mostly stopped aching, my muscles feel loose and strong again, and I’m ready for my next race. There will be a few before the Army Run comes around again next year. There’s a beer run, which seems eminently sensible and worthwhile to me. There are some zombie runs, and runs with inflatables, and foam. There’s a New Year’s resolution run. I’m already signed up for my next half-marathon, in Ottawa’s Race Weekend in the Spring.

But most of all, I still feel proud. The memory of the day hasn’t faded, as most things do. I still remember how present I was, with every step. There was no dissociation that day, not during the race. Other worries have come crowding back in, of course – that’s the thing with mindfulness, it requires you to practice, every moment, to keep worry and worrying, at bay. But my feet remember that I ran that race, and they remind me. They remind me that I finished. That I did it. And that I can do it again.

They call it “no ordinary race”. No race is ordinary, for me.

But I did it.