Fifty Candles

Two very annoying things happened this week, and they are related to one big thing that will happen later this month: my 50th birthday.

First, after three years of working on my own and some bad work and life situations that have left me financially drained, I need to find a ‘real’ job. I had an interview for a senior position a couple of weeks ago. It was a policy position for which I was perfectly qualified. It was between me and a man who is 27 and right out of grad school. This week, I got a phone call that the job was offered to the younger man. I was immensely qualified, I was told, and my experience was impressive…but they’d decided to go with someone who might have “some longevity with the organization.” 

In other words, I am too old.

Of course I was pissed off. But I also had a chuckle, because this is like some weird Gen X twilight zone. When I was in my 20s, I got turned down for job after job because they went to Boomers who had more experience. Now, I have TOO much experience and am losing out to Millenials. At some point in the past 15 years, for a good three months or so, I might have been exactly the right age to hire. I wish I’d known when that was happening.

The other thing that happened was that the “Oh, what are you doing for your birthday?” questions started. I was at an appointment, and the person had seen my birthdate on my file. 

“Ooh, this is a big one! What are you doing to celebrate?” she asked, breathlessly. 

I shrugged. “Not much.”

She pooh-poohed this, insisting I MUST do something monumental for my 50th. She and her friends had gone to Vegas. Or maybe my husband would throw me a big party?

I shook my head. I had neither the necessary people or resources to make either of those things happen. Plus, as an introvert, my idea of the Bad Place would be a surprise party or a weekend in Vegas. 

“I will be at home, with my cats and kids, eating a lot of cake,” I insisted. It seemed ideal to me, really. But this woman looked at me like this was the saddest idea in the world.

I’ve never really enjoyed birthdays or New Year’s Eve, or any event for which you are made to feel required by law to have a good time no matter what else is going on in your life. Don’t get me wrong – I am not giving in completely to my inner Eeyore and indulging in a pity-party for my birthday. I do not intend to spend my birthday staring mournfully out my window and thinking about everything that’s wrong. But somehow, having a giggly wine-bash just because that’s what social media says I should do doesn’t seem right to me. That’s not what I want. It’s *my* 50th, damn it, and I should mark it the way I want.

There are a lot of good things in my life, and things I’m proud of. know I have a lot of privilege, and I’m grateful for what I have. But I feel the weight of these 50 years. I bear the scars of having survived them when, a few times, I was sure I wouldn’t. Lately, I can’t seem to get out from under the weight of my life, and that weight obscures all but the dark things. My kids are unhappy and struggling. My parents are ill. I have no job or income. My personal life in no way resembles what I thought it would be a whole lifetime ago, when I was 25. I cannot say that I am a success in any of the areas of life that are important to me.

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To no one’s surprise, this was one of my favourite books when I was little. 

Am I wrong for not wanting to throw a party to shine a light on that?

I know there are things I can’t change in my life. There are things I need to just keep pushing through. But maybe I can light these 50 birthday candles and shine a light to find the joy.

To help me think about what the next part of my life will look like (and what I need to do to get there), I recently did a Joy Audit. A Joy Audit (or Life Audit) is a series of reflective questions about key parts of your life — personal, professional, spiritual, financial — that helps you focus on what is bringing you joy, what you need more of, and what you need to cut loose. 

What my Joy Audits always remind me is that I need to be true to the things that have been important to me since I was a little girl: things like writing and being creative, helping people, taking care of myself spiritually, and being independent. This time, my Joy Audit also helped me think about how I want to mark this approaching milestone birthday.

My Joy Audit reminded me that one of the things that brings me joy is doing something to leave a legacy to the world. If my years in this realm are slipping through the hourglass, how can I leave a mark that says I was here? How can I be sure the fact that I existed made a difference? How can I bring joy to others?

So my celebration of this milestone birthday will be quiet and personal, but it will last the whole month (I’m wondering if this means a month of cake, too, and I think the answer is yes. Because 50, damn it). 

Every day until my birthday on November 28th, I’m giving myself four gifts:

  • I’ll focus on one thing I’m grateful for, and do whatever I can to amplify the joy it brings.
  • I’ll make time for the gifts I’ve already been given, like writing just for the pleasure it gives me. I won’t let it be pushed to the back burner (helpful that my birthday falls during #NaNoWriMo!).
  • I’ll choose one gift I can give the world, in whatever small way. This might be a small act of kindness. It might be joining a board of an organization where I know I can make a difference. Whatever it is, in a small way, it will help me leave the world a better place.
  • I’ll choose one gift to give to myself. Not a material thing, but something that brings me everyday joy. A walk in the forest with my dog. Coffee with a friend. Reading one of the books piled on my nightstand. Forgiving myself for not being who or where I expected to be.

Fifty candles can shine a lot of light. They can burn down what’s not needed. They can give warmth and comfort.

That’s what I can do, too.

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The wolf and the trail of breadcrumbs

Over the past two years, I’ve shared a story at a few national conferences on digital health and patient engagement. It’s the story of how we first learned that Puck has Tourette Syndrome (TS), and the first time I realized how much energy and know-how it would take to navigate our health care system. It was a disempowering experience, but looking back, it pales in comparison to the messes we’ve encountered in trying to access care in the mental health system.

When Puck was eight, he started having severe headaches. He’d already been diagnosed with severe learning disabilities a year earlier, but he’d never really had any physical health issues. Our family doctor believed his headaches were migraines. She recommended getting some blood tests, and she suggested a CT scan just to rule out anything else.

We got the CT scan within a week. A few days later, on the Thursday afternoon before Easter, my doctor phoned me. (You know that’s never good: it’s usually the office manager or receptionist who phones, not the actual doctor.) She told me that  ‘something suspicious’ had shown up on the scan of Puck’s brain, and that while we shouldn’t assume the worst, we should prepare for it. 

There have been few times in my life when I felt as weak as at that moment.

The doctor said she’d send a requisition for the next available MRI, so that we could get a better idea of what was on Puck’s brain. All we could do was wait.

Weeks went by. Every time Puck got a headache, I imagined a ticking bomb in his head. I waited to hear about our MRI appointment. At work, I phoned my home answering machine every hour, hoping there’d be a message. There was nothing. After almost three weeks, I phoned my doctor’s office. The receptionist put me on hold for a long time, and then came back and said, “Oh sorry – we actually forgot to send that requisition. We’ll do it right now.”

And so, we waited some more. 

At the time this was happening, I’d recently finished working as the senior policy advisor to Nova Scotia’s Minister of Health and Wellness. I knew first-hand about the challenges with the health system. I read the frustrated letters from people who couldn’t access the care they needed in a timely manner. Almost weekly, the Minister and I spoke with people who were upset they couldn’t access specialized treatments or drugs they needed (or believed would help). I had thought that most people’s frustration with our health care system came from needing something extra; something more than our health system could reasonably offer. But now, going through this myself, I knew it was about the whole system: the lack of coordination, the lack of empathy, the lack of timely access to even the most routine care. 

Don’t get me wrong: I am a huge supporter of our Canadian health care system. But I believe many of the problems we face are not a Canada-only problem. So much of people’s frustration with any health system comes from the complete lack of compassion and information – the lack of patient connection to the decisions and communication about our care. Those are problems found in most systems, whether universal or insurance-based. Information IS power. It gives you a sense of control over a very out-of-control situation, and that goes a long way to giving someone peace of mind. Not knowing where we were in the system, or if anyone was even paying attention, was a horrible, powerless feeling that only compounded the powerlessness you feel when dealing with a sick child. 

Around this time, I complained about the whole MRI situation to a physician I knew through my work. She told me she might be able to help. She said her clinic used a personal health record, and that she’d be willing to take Puck on as a patient. I didn’t see how a health record on a computer could possibly help, but I was willing to try anything. So she helped me set up Puck’s record, sent him for loads more blood tests, and sent an MRI requisition to all of Nova Scotia’s then nine health districts to try to get us in faster, somewhere.

Puck had the blood tests the next day. Two days after that, I got a notification on my phone that the test results had arrived. I could go online and see all of them, in detail. I’m not a medical professional, and I can’t interpret medical tests. But each result came with an indication of what was considered a normal range, so I could see where Puck’s results fell. The doctor had also sent a note explaining which test results indicated a need for follow-up. Finally, I had information. It might not be the ‘smoking gun’ that would tell us what was causing Puck’s headaches, but it was, at least, a piece of the puzzle. I could look at those test results, and know what things I could STOP worrying about. For a parent with a vivid imagination and not a lot of information, that was powerful. Being able to access health information online was a huge step in addressing the power imbalance that exists between health professionals and patients.

We managed to get an MRI in another part of the province with a shorter wait. The doctor had also arranged an appointment with a neurologist at the children’s hospital (in a brighter, far more cheery part of the hospital than the mental health ER we later became too acquainted with). The neurologist was a delight. He played soccer with Puck in the hallway, put him at ease, and told us, happily, that the ‘suspicious thing’ on Puck’s brain was nothing to be concerned about – it was just an enlarged space between blood vessels. The headaches were, indeed, migraines. 

However, through all the testing and family history he did, he discovered that Puck has Tourette Syndrome. Incidentally, I was diagnosed with OCD at the same time – the two often go hand-in-hand, and I’d been living with manageable symptoms at the lower end of a spectrum my whole life. (My partner told the neurologist my symptoms made me ‘mildly annoying to live with’. I told him they made me ‘quirky’.)

 As it turns out, these things were all part of a long trail of breadcrumbs that we’re still following for Puck – a trail that now includes learning disabilities and severe mood disorders. I suspect we’ll soon be adding new breadcrumbs to the trail. Every time I think I’ve got the trail figured out, the signposts disappear, or the trail stops altogether – or the Big Bad Wolf, in the guise of the health care system, comes along and gobbles up the trail, leaving us lost and alone.

There is no easy way for parents to navigate complex health systems. Throw in both physical and mental health systems — which, after all, are not integrated and are two completely different experiences — and it’s twice as confusing and time-consuming to navigate. As a parent, you have to know who to talk to, and you need to know how to speak their language. 

I know how lucky I am. I had connections I could call on for help. I knew the language. Most parents don’t have that. I remember sitting and waiting, as Puck was motionless inside the MRI machine. I was so anxious, so terrified of what they might find. Seeing him stuck in there broke my heart, and I had a premonition that it was only the beginning of many such heartbreaks, as our journey through the health system unfolded. I remember, too, thinking of all the parents who couldn’t follow the breadcrumbs. Maybe they didn’t know who to turn to for answers, or they didn’t even think you should question your doctor. My heart broke for those parents…the ones who are still waiting by the phone, waiting for an appointment for a test that might give them answers, even though the requisition was lost weeks ago or sent to the wrong fax number. 

We have a right to expect that our information will be handled in the most efficient and compassionate way possible (are fax machines really that efficient, these days?). Parents with children experiencing a health crisis – whether that’s physical or mental – are in crisis, too. The system shouldn’t add further burden to these families asking them to create their own trails, alone.

We’ll never get back where we were before we started on this journey. And with this huge wolf following behind, eating the breadcrumbs…how will we ever find the trail that takes us where we need to go?

Beneath the surface

A typical conversation with anyone, these days:

Them: How is Puck? He seems fine?

Me: Everything is fine.

(Everything is not fine).

Them: How are you doing? You’re doing such great work! Things seem to be going really well!

Me: Everything is fine.

(Everything is not fine).

Things look so great on the surface, don’t they? It’s summer, and everyone is posting their fabulous vacation photos. Bikini photos. Summer party photos.

That’s just the surface, though. Those are the images, the narrative, we can control. You never really know what’s going on. Below the surface, things get murky.

We have a family cottage on a lake. It’s idyllic. I like to sit on the dock and dip my feet in the water, watching the kids and the dog spend the whole day swimming and playing. It’s been so hot lately, and the water is so refreshing…but I don’t go in. There is a part of my imagination that is still six years-old and imagines there are monsters below the surface. I hear the Police song Synchronicity II in my head as I draw my fingers across the dark water. I am NOT going in there. 

It looks beautiful; it feels tempting. But I am scared. I don’t know what I might be jumping into. And I am so tired, I might sink like a stone.

I’ve been waking up tired for months, despite sleeping well. It’s a different kind of tired; a tired that parents of kids with special needs know well — a kind of psychic tired. The tired you get when you are always walking on eggshells, waiting for the next crisis (because, of course, things are never as calm as they appear on the surface). The kind of tired you get when your own needs are shoved back and ignored for years, just so you can all keep everything and everyone going.  The kind of tired you get when you’re expected to be an expert in something you were never trained to be an expert in. The kind of tired you get when you’re too often reduced to ‘mom’ and forget who else you meant to be. The kind of tired that far too many women, frankly, consider normal, because if we don’t do this emotional labour, who will?

It’s the kind of tired you get when you’ve been fighting against accepting what life has dealt you.

Everything has been in limbo for so many years now, as we’ve waited for things to get better with Puck…to get back to ‘normal’. I’ve had to jettison anything that weighed me down so that I could just keep treading water. Friendships. My career. Self-care. Reading a book that isn’t about a particular neurological disorder. Writing my own book. I jettisoned so much, in fact, that as I sat on the dock by the lake this summer, I realized how little of me was left. I felt as translucent as the little dragonflies that skimmed across the lake’s surface. 

Who am I, anymore? Where are all the parts of me that once defined me?

I found myself sitting on the shore of a lake and asking myself, like in the Talking Heads song, “Well, how did I get here?”

Where is my beautiful job?

Where is my fabulous life?

I sloughed them off, long ago. I am left with this translucency. When the little dragonflies skim the surface of the lake, water droplets create rainbows on their tiny translucent wings. I’m jealous of them. I want their colours.

My summer’s work seems to be to come to terms with our ‘normal’: this is it. There will be no return to some nostalgic family life that I’m not sure even existed for us before Puck’s troubles began. Puck’s needs and our constraints are real and they are permanent, and I have to work with that.  I’ve been mourning the things I jettisoned as the things that defined me: the 9-5 office job and the financial security it represented, the career ladder. The wardrobe that consisted of more than pyjama pants and jeans. But that’s who I used to be.

And if I’m honest, a lot of the things I’ve jettisoned weren’t such a loss. My new, self-employed way of working may not be financially stable (yet), but it gives me freedom and flexibility. I’ve lost touch with a few friends, maybe, but the true ones are still around, and I’ve managed to find a tribe of creative, supportive women who understand my choices, because they’ve made tough ones of their own. There are a lot of dragonflies out there.

And then, sitting on that dock, an idea: Who’s to say what lurks below the surface of the lake is bad? What if, instead of finding monsters, I found something wonderful? What would happen if I actually dove in?

I recently made the decision to end a work contract I’ve had for a couple of years. I know it’s the right, healthy decision for me, but it’s scary: there’s nothing to fill that financial void. I have to trust that it will come. I have to take a leap, and learn to swim once I’m in the water.

Others have told me I have so much to offer, so much experience, so much skill — things will happen, they assure me. But we all know that sometimes, it doesn’t work like that. Experience and skill sometimes aren’t enough. Look, I’m middle-aged (there, I’ve said it.) This is not a time for reinvention or to figure out what you want to be when you grow up. But there you are. That’s what I’m doing.  (And you may ask yourself, how do I work this?)

I am a translucent dragonfly, but I’m finding my colours. I’ve started working on my novel again – an act that feels reckless and brave and true. I’m revisiting things I used to do and love long ago, and listening to myself more. I’ve talked to so many women in the past few weeks who have encouraged me to think outside of the box and use my talents to make change in the world…I’m just not sure how, exactly, but I’m working on it.

The person I am becoming is not who I was or who I thought I should be. But it will be who I need to be — for me, and for Puck. That’s a gift he’s given me.

What lies below might be good. I need to dive in.

The Island of Misfit Parents

School starts in one more sleep. Puck is excited, for the first time ever.

I am apprehensive.

His new school seems to sense the apprehension parents will feel. It offered a ‘Parent Orientation Night’ a week before school starts, to help ease our fears.

Daisy is almost 14, and Puck is 11. I’m a seasoned veteran of Parent Nights.

For the past six years, I’ve attended the Parent Information Night at Daisy and Puck’s liberal arts private school. They’re social events, held in the cafeteria of the newish, bright and cheerful, purpose-built school. Parents are served wine and beer, cheese and snacks. I usually rush to Parent Nights after work, so the wine and cheese does double duty as social anesthesia and my supper. Perfect.

The parents mingle – some, who socialize with each other regularly, mingle readily. Some Socially Awkward Penguins (like me) fiddle with our wine glasses and hope the actual information part of the meeting begins quickly.

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The past couple of years, as Puck’s behaviour deteriorated, have been increasingly awkward. His classmates’ parents give me wan smiles and drift on past. I am marked as That Mother. The one with the ‘Bad Kid’ who always gets sent home from school. The one their own kids tell them about breathlessly across the supper table.

The school Puck will go to this year isn’t bright and new. It’s a repurposed 1960s-era neighbourhood school, patched up and old-school in every sense. Cloakrooms. Blackboards. Dim, long corridors. On Parent Night, parents shuffled quietly into a gym that smelled of decades’ worth of rubber-soled shoes and floor polish. There were no refreshments, no socializing. I found a seat in the middle of the room, and looked at the families around me.

My discomfort was immediate. Some parents had brought a child with them — perhaps unable to get child care, or perhaps hoping to make the child more comfortable in the new school surroundings. These children were not like the children at Puck’s old school. They looked…different. They were 12-year olds who hid their heads in a parent’s shoulder. They were eight-year olds rocking in their chairs. They were high school students, biting their nails and tapping their feet to diffuse anxiety and energy, oblivious to the room around them.

They made me nervous.Read More »

These (fat) legs were meant for walking (all over your stupid sexist BS).

I spent the entire decade of my twenties hating my body. No, not just hating it – actively trying to destroy it. I starved it and abused it. I punished it for crimes for which it wasn’t guilty. In my mind, all my young life’s problems stemmed not from my mind or spirit or environment, but from the failings of my body.

I consumed little, while my eating disorder consumed me.

At its worst, I was unable to think rationally, to work, or to do anything but obsess about my caloric intake. Dreams and goals and relationships were destroyed, along with my mental and physical health. It was the most painful ten years of my life.

Eating disorders are the most lethal mental illness. 10% of people diagnosed with anorexia will be dead within ten years. At times, when I could feel my heartbeat fluttering, or I became faint from the workouts I forced myself to do despite having not eaten, a sane voice in my head warned that I was in real danger. But the eating disorder voice was always stronger.

“Just a bit longer,” it whispered to me. “Once your body is perfect, you can stop.”

But your body is never ‘perfect’ to the eating disorder. And you can’t stop so easily.

Recovery from an eating disorder isn’t straightforward. It’s hard, and it’s long, and relapses are common. Recovery isn’t a final destination, either. Once you come through to the other side, you realize how much the eating disorder took from you. Once you’ve started to restore your body and mind, you understand how much work you need to do to repair your relationships, your bank account, your education, your career. It’s exhausting.

I’ve sustained recovery for many years now. My body is healthy, and I nourish it.  But recovery requires an almost daily choice to accept myself as ‘enough’ in a society that is so damn eager to tell me I’m not. Read More »

Always something there to remind me.

My 13 year-old daughter decided to clean her bedroom last weekend. Yes, this happens so seldom that it’s worth writing about.

For a year or so, her room has reflected her own internal transformation: artifacts of little girl fantasy bumping up against young teen reality. Tinkerbell and Barbie coexisting uneasily with algebra tests and bras.

I’d been telling her for months that she needed to clean her room. I’d intended only that she straighten things up. It was her own decision to do such a radical purge. (I like to see this as a successful change management strategy: I got her to think it was her idea, and she fully embraced it). She wanted to make space for the new parts of her life, and to hide the immature remnants that embarrass her now. She wasn’t just cleaning a room. She was curating an identity; translating the changes she’s been navigating as a middle schooler into her own surroundings.

She grabbed boxes and recycling bags and got ready to purge. I sat on the edge of her bed and got ready to save.Read More »

Don’t think about it. Just eat it.

My father eats gross things. Head cheese. Liver. Fried baloney. I never tried the first two. Baloney, however, was a lunch staple at our house, especially if my mum wasn’t home and Dad was in charge of feeding me. I didn’t like it, but I’d eat it, because I liked hanging out with my dad, and enjoyed the knowledge  that we were eating something my mother wouldn’t approve of.

I recall one day, standing next to him at the stove and reading the label on the tube-shaped slab of baloney. Dad slapped my hand away from it.

“Don’t think about it what’s in it,” he warned. “Just eat it.”Read More »