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.

Success, and struggling, look much the same

I’m struggling these days. I’ve recently shifted to a 100% workweek, because I quite simply can no longer afford not to get 100% of my salary. My many credit instruments are 100% tapped out. It’s the most flexible, most accommodating, most understanding arrangement my bosses could possibly support, and I am endlessly grateful that we could work something out. To accommodate my daily fatigue and my need to task-switch frequently and my unreliably diminishing vision, I work my 8-hour day over a period of 9-12 hours, depending on what I need on any given day. And I get to use my ears as much as my eyes, listening to relevant audiobooks and talks. And I’m not tied to my desk – I get to leverage technology. It means I’m shifting my outputs to more presentations and fewer papers, more meetings and training and networking, and expanding the topics that I am developing expertise in. It also means that I feel like I am constantly working, always on. It has helped me work with, around, the physical aspects of my disease. It is, or will, slowly (very slowly) help me climb out of my mountain of debt that I’ve accumulated due to paying for my many treatments, and due to working less than full-time thanks to the inability to do what normal people do, and due to the many months of going without any pay at all when I was off work completely.

The currency I am paying in, in order to accomplish all of this, is my mood, my relationships, my sense of inner peace, my health. My quality of life. Work-life balance, you ask? I’m sorry, what? What’s that you say? Wait a sec, there’s such a thing?

No, I’m afraid not. Work-life balance is for the privileged. Not for persons with disabilities. We don’t get to have that luxury.

Maybe, if I’m very lucky, in 6-8 years my son will move out, and I’ll be able to downsize to a 2 bedroom apartment, and sell my house, and then I’ll be able to afford to reduce my hours to 80% again. I doubt it, seeing as he’s on the autism spectrum, and he can’t currently clean his own room or manage his compulsive eating on his own. But maybe. The goal is to raise a self-sufficient adult, and he’s managing to get through school OK so far, so there’s hope for eventual independence. And, the last 2 years of my career, I’ll have the option to go down to 50% hours without impacting my pension, if I can afford it, if I’ve made housing changes by then and moved into a 1 bedroom apartment or condo with both kids moved out. So, I really just need to make it 6 years, 8 years, 12 years, 14 more years. I can do that, right? One day at a time.

The irony is that I should be celebrating. Yes! I can do this! I’m well enough now to be part of the real world, and pass for a normal person! The bank might actually let me remortgage, eventually, and consolidate my debts, now that I will have a regular salary again! (Once I improve my credit rating substantially, that is.) A friend actually did congratulate me recently, thinking that I’d made my choice because I was feeling better. Not knowing that it’s neither a choice, nor that I’m actually better.

I’ll get through this. Relying upon my grit, as I do. Right now, to manage, I’m bunkering down. Focussing on self-care, silence, alone-time. Saying no to friends, family. Getting some exercise in, every day, even if the most I can manage is my walk to work. Making sure that the little bit I can eat is the healthiest food I can find. Greens. Fish. Legumes. Berries. Nuts. Chia seeds. All the good-mood foods. Many days I live off of my trailmix and overnight oats and hummous, but, that’ll do. Every once in a while things taste good, and my tummy doesn’t rebel, and I get to enjoy food fully. Sure does make one appreciate.

I’ve been keeping up with my daily meditation practice, as I fall into my daily nap, and it helps. It helps me remember my mindfulness the rest of the day, remember my body scan, body presence skills, remember my gratitude. It helps me stay out of dissociation. It helps me connect with my dog, sink into music, feel the sunshine. Next step is building a regular yoga routine into my day. That hasn’t consistently happened yet, but there’s a chance it might. To do it, I have to steal time and energy from something else, and since every moment is currently essential for some other essential thing, like sleep, or work, or getting the kids to school, or groceries, or chores, then yoga has been cornered into a class a week or the very rare yoga retreat weekend. But, I have the dream of a daily practice. And all new realities start with dreaming of them. Also, aiming to become a monk, or a yogi, is pretty financially sustainable. Thank goodness for the appeal of minimalism.

I am deeply, ever, grateful that I love my job. That I’m in the perfect position, and that I’m passionate about my work. This could never work otherwise. I could never slowly disappear, ounce by ounce, working for an employer, or a cause, I didn’t believe in. Then it wouldn’t be a slow wearing-down, it would be a total collapse. And I’m also ever grateful that work supports my studies, and that my academic and my professional interests align, the psychology of human behaviour, choices, incentives. So that if I do go off the rails again, and I suffer concurrent burnout and depression again, and I do have to eventually retire early for medical reasons and live off of a reduced pension, that I will have a back-up plan, that I will be able to research and write part-time to supplement my income for as long as I need to. And the back-up to my back-up plan is to become a part-time yoga teacher, so I feel relieved knowing that in the long run, I will manage. I will be OK.

I intellectualize, over-analyze, when I’m feeling numb. It’s my lifelong coping mechanism. Many depressives do – it’s a way to stay out of your feelings, when feeling is completely overwhelming. It’s one of the ways in which depression helpd us get through trauma, helps us overcome difficult circumstances. Depression is adaptive, ultimately. One of nature’s great species-preserving secrets. Helps keep us alive. Ironic, isn’t it, that the most noticeable aspect is how depression makes you not want to live?

For now, the goal is to stay out of complete relapse. I have my depressive cycles, but they are more manageable than they used to be, thanks to good medication and good coping skills and good habits I’ve made myself make non-negotiable in my daily routine. For the past 2 years, I’ve had more normal, healthy months than I’ve had depressive months, with my depressive episodes lasting closer to 3 months than 6, and my healthy periods the inverse. This is huge progress.

So, I do consider myself lucky to only be struggling, to only be in half relapse, to be managing to manage. My dog considers herself lucky to be getting extra cuddles. So, just like on my difficulty-eating days, I’ll just keep eating one bite at a time.

The Capacity For Joy

What does it mean to be joyful? Full of joy?

I have moments. Which is better than the many months when I didn’t have any. And the many days I still don’t. But, what I wonder, is will I ever know more than just moments? Stretches of days, weeks, months, years, that aren’t perpetually clouded over?

I dunno.

Most of the time, I think that time has passed. If ever there was one.

Maybe I’m just old, now. At the ripe old age of 41. Cynical, and jaded, and worn down by life.

I’ve just come from seeing the amazing musical “Come From Away”. It was feet-stomping, standing ovation good. The story of how all the Eastern Seaboard airplanes got diverted to Gander, Newfoundland, Canada, on 9/11. Heart-wrenchingly full of memories for me, as I, like many millions, billions, of others, remember exactly where I was standing when I heard the news, how surreal it felt, that day. My babysitter, taking care of my kids so that I could go out with my generous-ticket-buying dad to the play, hadn’t yet been born, the day the Twin Towers fell. How do I tell her that even this, being submerged in the reenactment of that day, can’t make tears come to my eyes?

It’s not just the capacity for joy that depression takes away. It also numbs grief, and terror.

I remember the look on my son’s face the first time he saw the footage of the planes crashing into the sides of the buildings. He was 4 years old, and we were at the War Museum in Ottawa, and the news video was on a loop on a screen in a room he’d walked into ahead of me, and I didn’t think to shield him in time. I caught sight of his stocky, stock-still body, this ADHD child who vibrated 24/7, and I knew something was wrong just from his stillness. As I came to see, I saw the tears streaming down his face, and only once I followed his gaze did I realize what room we were in, what century of war we’d just walked into. “Why did that plane just crash into that building, Mom? Are those people jumping out of those windows? What happened to the pilot? Were there passengers on the plane? What kind of accident was it? Why is there so much smoke?” Recently, now 12, my son told me that he still remembers that day. That he still remembers what it felt like to learn that it hadn’t been an accident. But that now, he doesn’t feel it so keenly. Life has numbed him, too.

It’s not just TVs in museums that I’ve learned to fear. Now my kids learn what lockdown drills are in kindergarten. There are many dimensions of terrorism.

I saw cynicism on another face, today. Greta Thunberg just landed in New York from her 2-week sail across the Atlantic. I was showing the video to my 6-year-old, vegetarian, climate-incensed daughter, and I think Greta Thunberg is her, and my, new hero. And I agree with this courageous, poised young woman, that it is insane that it should take a 16 year old taking time off of school to get the UN, and the world, to pay attention to climate change.

What does it take, to care, to care again, when the unimaginable has become commonplace? Sometimes I wonder if it isn’t just me, but the whole world, that is experiencing depression. A dulled, numb, grey wash of remoteness.

Something pierced that numbness for me, recently. Brought me an hour of joy, enough to make my smile hurt. I marched in the Ottawa Pride Parade for the first time, with one of my partners, and it wasn’t the floats, it wasn’t the costumes and get-ups, it wasn’t the large crowds that filled my heart. It was the signs, all the many signs, that said “Free Mom Hugs”. I stopped walking and rushed over for a hug from every single one of the moms holding one of those signs. And from the one, lone, dad, offering free dad hugs.

Love is love. In tonight’s musical, there was a song. There were a lot of special songs, but there was one in particular. It combined an old Christian hymn with a Jewish song, and Hindus and Muslims joined the Christians and Jews praying, kneeling, worshipping together. I know the Newfies in Gander would have offered every one of the 7000 people diverted to their town because of 9/11 free mom hugs. In fact, they did. And that’s why now there is a Broadway musical about it.

My daughter came home to me today and asked me “why does Daddy say you’re selfish?” What to say to her of that? This is the man who took my children away from me half the time, due to me saying that I wasn’t OK with his infidelity. This is the man who catapulted me into a four-year-long depression I have just now barely climbed out onto a precarious ledge of and am teetering, not sure whether my next step will be up or down.

So, instead of answering such an unanswerable absurdity, I ask her what her heart says. And she snuggle-hugs me and giggles: “Oh Mom. You know my heart knows that you’re the best.”

“Well, let’s just make sure you always know to listen to your heart, forever, OK? Not other people. You know that all the answers are there inside of you, just waiting to be found.”

A line from Come From Away:

Why are Newfies so bad at knock-knock jokes?

Stranger: “Knock knock.”

Newfie: “Well don’t just stand there, c’mon in!”

We Canadians don’t get so many Broadway musicals made about us. We tend not to have so many 6-year-old climate change activist celebrities. Maybe most of us are a little, or a lot, cynical, jaded, and worn down by life.

But the Newfies know how to answer a knock. The kind on the door, and the kind that fells you. They know that the answers all lie within their own hearts. And my kids do too. I just have to hang on a little longer, and keep asking, to find mine.