Time and Tide

I like to tell my children two facts to dazzle them with proof of my advancing years:

1. I was born (slightly) before humans went to the moon, and;

2. Three-quarters of my life (and most of its most significant events) came before social media. 

Of these two facts, it’s the latter that my kids find most shocking, because a life without social media — without a digital trail of your every move, just a click away— feels more alien to them than a trip to space.

Most of the hard proof of my existence is analog, not digital. It’s photos and memorabilia, and it’s scarce and scattered. It’s shoved, out of order, into photo albums and shoeboxes and slide carousels. It’s hidden in cupboards and cabinets and basements. It’s gathering dust in mysterious undeveloped rolls of film in a junk drawer. It’s falling out of yearbooks, along with pressed flowers and notes whose importance I’ve forgotten (although they were important enough for 16-year-old me to keep them forever, certain that middle-aged me would remember and be impressed). 

It’s easy to ignore analog memories. Don’t want to think about it? Don’t look at it. Hide that photo. Pack away the yearbook. If I don’t think of them, the memories stay hidden and unconfronted. Many exist nowhere but in my mind. And memories, I’m all too aware, are tenuous things. Keep them hidden too long, and they may well fade or get lost forever…much like an old Polaroid fades, its image slipping away.

The digital world, though, doesn’t let things slip away. We trip over the memories it throws in our path, unbidden and out of context. It’s not the shoebox hidden under the bed; it’s Pandora’s Box opened in front of the world.

I was reminded of this last week when Facebook showed me what I was doing eleven years ago. Memories from that far back don’t usually pop up in my timeline; back in my early social media days, I didn’t post much, unless it was something really important. And this had been important: my parents’ 50th wedding anniversary. We’d spent it at White Point Beach Resort on Nova Scotia’s south shore. The early October days had been warm enough for my kids, then just two and four, to play in the ocean. My parents happily spent hours with them on the beach, sharing stories and making memories. 

The picture that popped up in my timeline was sweet: a photo of the two most important females in my life — my mother and my daughter — walking on the sand, backs to the camera, marching purposefully toward an adventure. In this photo, Daisy is a lively little strawberry-blond girl whose biggest problem in life is figuring out which Disney princess is her favourite. She is walking next to my mother: a tall, vibrant redhead, intently telling Daisy stories and secrets.

The photo took my breath away. It took me by the shoulders and forced me to acknowledge how much things have changed in eleven years. When it popped into my timeline, I’d just returned from visiting my parents for their 61st wedding anniversary. When I visit my mother these days, I note the repetition, the lost memories, the uncertain questions about how old Daisy and Puck are and what they are doing. I notice that my parents’ house is not as well cared for as it used to be, and that my mother doesn’t want to leave the house, at all. I see that the brilliant red hair is faded to silver-streaked copper.  I note all these things, but I hold them at arms-length. I don’t’ look at them too closely. She is, I tell myself, 81. We are all getting older. That’s all it is. Nothing has changed, so much.

But this photo. More than anything in the last five years, it’s forced me to look at what’s happened to her – to us. Even more than that time, five years ago, when my parents were going away and she showed up at my house with twelve loaves of half-eaten, partly-moldy bread for ‘safekeeping’. Even more than two Christmases ago, when she gave 12-year-old Daisy a size 4T sweater.  Even more than the several times she’s confused me with her late sister-in-law, calling me by her name and giving me the cold shoulder because they never got along well.

This photo forces me to look at the before and after. I am jolted by the realization of how much she’s failed in just eleven years, how quickly dementia has pulled at the threads of both her mental and physical self, loosening the weave that held her together. She is a faded Polaroid of who she once was. I am struck by how willfully I haven’t looked at it.

I show the photo to Daisy, asking her if she remembers that day. She cocks her head to the side and thinks.

‘I remember getting in bed with Nana and Papa early in the morning,” she tells me. “Papa was snoring. But Nana told me stories. She told me the story of little Red Riding Hood.”

I smile, picturing my redheads sharing that story in the dawn hours.

Daisy wrinkles her nose at the photo. “I was all in pink,” she says. “I was such a girly-girl.”

Daisy sees little in common with the tiny girl on the beach. She doesn’t like pink anymore. She’s known for a while that she’d rather find a princess than a prince. She barely recognizes herself in the photo. I, though, see her, still. I will always recognize her, as my soul recognized her’s the first time I held her and looked into her eyes. She’s the same, though grown. The photo shows her walking eagerly toward adventure. She’s well on the path, now.

Daisy doesn’t recognize my mother, either. She doesn’t really remember a time when my mother was lively and ready to go for walks and adventures. She only remembers the more fragile, uncertain grandmother.

My mother, too, is still there, although it’s harder to recognize her. As the bright red hair fades, I feel her essence is fading, too. Who she was in this photo is disappearing like a footprint in the sand. It’s only the memories that will preserve the way she was. I’ve been hesitant to look at those memories. I see now that I have to look and to remember before it all fades – before time and tide shift it all, and rub it out altogether.

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Grey sky. Bright leaves.

Are you as exhausted as me?

This week has been HARD. I should know to stay away from the news. But I couldn’t. I kept watching, even while a sexual assault survivor was mocked, the whole world became more hostile, and anger and pain seeped out of every social media channel I checked into.

I felt frayed. Every cell in me felt shrill, like I was screaming from deep inside and no one could hear me (or no one would listen). My eyes burned with tears that wouldn’t fall. My head ached. I think a lot of women felt like that, this week. 

That would have been more than enough, frankly. But I was also struggling personally this week. I had a child in crisis (not the usual child, either) and felt like a failure as a parent. I had a mother who couldn’t remember that I’d called already, who hinted I was a failure as a daughter. I was trying to move on from a job I’d left, with suggestions that I hadn’t done enough.

Messages of failure, all around.

I wanted to crawl into my bed and hide. But I couldn’t. My husband was away, my kids needed me, and life had to go on. I had to be the adult, even though I felt like I’d failed at being an adult.

By mid-week, I felt alone. I felt unloved. I felt (as many of us do) tired of fighting the same fight, over and over again. I felt lost. I had nothing more to give.

What pulled me through? Not self-care. Not bubble baths or meditation. This was beyond that, frankly.

What pulled me through was other people, and gratitude. Messages of love, all around.

All it took were a few messages. A few people who checked in to see how I was doing. People I haven’t heard from in a long time, but who, I was so happy to know, still thought about me. 

Never underestimate the power that has.

If you are thinking about someone, tell them. A simple email or text asking someone how they’re doing can make all the difference in the world to someone who feels alone and is struggling. It’s those delicate but strong little spider webs of connection that can hold us in place. I needed to know, this week, that someone saw me; that someone heard me. I needed to know, this week, that someone thought about me fondly. I needed to know I mattered.

Knowing that other people care about us can help us to care for ourselves. These messages of care lit a match in my darkness. They showed me I wasn’t alone, and that there was a path in front of me. They pulled me to my feet and gave me the energy to keep going.

I often hear it said that we can’t be loved until we love ourselves. There is truth in that, to be sure. But love doesn’t happen in a vacuum. We need to know we matter. We need to know there is a place for us, and that someone sees us. Connection is a huge determinant of health. None of us can do this journey alone.

That doesn’t mean having a huge friends list or a non-stop social life. It can mean a connection to one or two people who really see you. It means connecting to people who see your value and your flaws and care for you, just the same. It means connection to people who, ultimately, allow you to not be strong or have a perfect image all the time. This gives us permission to not be strong all the time. Sometimes, like this week, we just can’t.

It’s Thanksgiving, and all through this rotten week, I was also reminded that I’m supposed to be grateful. It sounds trite when you’re feeling really low, but finding even small, mundane things to be grateful for can help make the flame that lights our way a little brighter. Even with all the crap in the world and in my life, there is still gratitude:

I’m grateful that my kids are able and willing to open up to me about what they’re experiencing.

I’m grateful for new beginnings.

I’m grateful for the courage to revisit paths that are important to me but that I’ve strayed from. I’m also grateful for the courage to step onto a completely new, somewhat surprising and completely different path — one I’m going to travel simply because it can bring others joy.

I’m grateful for my cats.

I’m grateful for friends, especially those I thought I’d lost.

I’m grateful for the brilliantly coloured leaves that flare against this morning’s grey sky, reminding me that there is hope in the bleakest moments, and that change can be beautiful.

What are you giving thanks for?

Cold milk, warm cookies, & magic.

Every evening after supper, my son and I take the dog for a walk. And every evening on our walk, we have the same conversation – one of us will ask the other, “If you were at Disney right now, what would you be doing?”

No matter how hard his day was at school, or how intense his anxiety and depression, talking about Disney brightens Puck’s mood. His face animates as he tells me which park he’d be in, and which ride or attraction he’d visit. We talk about which restaurants we’d go to, and which treats we wish we could eat right now (Mickey bars and Mickey waffles are two of our favourites). We imagine which resort we’d be staying at, in which type of room. We even reminisce fondly about the Orlando airport, or the beautiful boat ride from Port Orleans French Quarters to Disney Springs. By the time the walk is over, we’re both feeling happier and have planned out a whole day’s activities for a vacation we aren’t even planning to take any time soon. And we’ll do it all over again the next night.

IMG_0170Yes, we are one of *those* families. We’ve been to Disney – a lot. We’ve been on a Disney cruise. We’ve gone on other vacations as a family, too, but it’s Disney that holds our hearts.  I’ve been fortunate to travel a fair bit. I’ve been (and lived) from coast to coast in Canada, and I’ve traveled throughout the United States. I’ve traveled to several islands in the Caribbean, and several countries in Europe. But it’s Disney that we keep returning to as a family. Some people don’t get it, and question why we go back over and over. It certainly wasn’t what I had planned. I was going to show my kids the whole world. But for us, Disney provides a dependable happiness and a retreat from reality that we haven’t found anywhere else. The rest of the world can wait. We’re searching for a world of magic.

Don’t get me wrong: my history of vacationing at Disney is not one of perfect family time or unbridled joy. We are not the happy family you see in commercials. Each trip has come with its own challenges, but also lessons. As a teen, I traveled with a mother who actually didn’t like Disney at all, and a father who wasn’t keen on most rides. I learned to appreciate everything else the parks have to offer. My first trip with children of my own was as an extended family. At the time, my father-in-law was in the early stages of dementia and was confused and prone to getting lost. My mother-in-law was recovering from a hip replacement but in her typical no-nonsense fashion, refused any help. I learned to slow down and not try to do everything. 

Other trips have been planned to balance my daughter’s “let’s do everything!” style with the ups and downs of Puck’s constellation of challenges. Sometimes, sounds were a problem for him, so we learned which attractions or places to avoid. On other trips, it was the crowds, so we learned where to watch fireworks in a less intense setting.

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Tinkerbell and Daisy in a deep fairy discussion.

Although we used a travel agent for our first two trips, I quickly became an expert at doing the planning on my own, focussing on my family’s special needs. I learned what Disney had available to help us, and created detailed itineraries that helped Puck understand what was going to happen each day, while still giving us the flexibility to have fun. I learned how to help Daisy do the things that would make magical memories while keeping Puck happy and calm.

We go back because even though Disney can be a non-stop, intense destination, it actually does a lot to cater to families like ours. Never was this more clear than on our last trip. My father-in-law’s dementia has worsened to the point where it is impossible for him and my mother-in-law to travel on their own. We knew it would be hard, but we wanted to take one last big trip together, as a family. 

I was so hesitant. I knew caring for him and my mother-in-law (who is game for anything, although frailer than she’d admit) on a cruise and then at Walt Disney World was going to be a challenge. On top of that, we had our own kids to think about – including Puck, who would turn 12 on the trip, and who had been having a terrible year with clinical depression and anxiety. I honestly didn’t know what to expect. Even though a dear friend and Disney travel specialist helped plan the details of the trip for us, I had very low expectations.

We didn’t get off to a good start. Puck’s anxiety about leaving his routine kicked in at the airport, and he was in the bathroom being sick right up until our flight boarded. My father-in-law had no idea why we were on a plane or where we were going. We spent the five hours of travel explaining to him, every ten minutes or so, that we were all going on a vacation together. 

Everyone was tense.  I was sure we’d made a big mistake.

We were leaving on a cruise the next day. But first, we’d have a night at a Disney resort. We got settled in our rooms and headed to the Magic Kingdom for the evening. My father-in-law had been agitated and confused, asking repeatedly where we were. Puck was weak and anxious from being sick and was popping ginger tablets like candy. The rest of us were tired and a bit defeated, feeling certain the trip was going to be a disaster. 

But when we got off the bus, got everyone through security, and walked onto Main Street, everything changed.

My father-in-law stopped and stared at the castle in the distance. “Oh!” he said, a big smile spreading across his face. “We’re at Disney!”. And he proceeded to tell us stories from visits 40 years earlier, when he’d gone there with his young children. He could remember those trips in detail, and while sitting on Pirates of the Caribbean, he marveled at how things were just as he’d remembered. He grabbed Puck’s arm and said, “Oh, the jail scene with the dog is coming up next!”

He couldn’t remember how we got to Florida or why, exactly, we were there, but somehow, he remembered what scene was coming up in a ride he hadn’t been on in years. He was smiling and relaxed and having fun — something that happens too little, these days. 

Puck, too, changed as soon as we were in the Magic Kingdom. The anxiety melted as he saw familiar sites he loves. Puck’s challenges make him a bit less mature than his age would suggest, but that doesn’t matter at Disney. Everyone – even me, who was just turning 49 — can be a child. There is no pressure to be mature, and no one judges you for acting like an excited child. He can act younger than his age. I (a grown woman) can get excited to the point of tears over hugging Eeyore. It’s all good.

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You’re never too old to hug Pooh bear.

Later that night, when we got back to our resort, my father-in-law wanted a ‘bed snack’. We went to the quick service restaurant, and my mother-in-law chose some cookies for him. At the cash register, my father-in-law became distraught: he couldn’t eat cookies without milk, he wailed. He was on the verge of tears. My mother-in-law panicked; she didn’t know where the milk was, and she couldn’t leave my father-in-law to go look. She was worried about him making a scene, and not being able to calm him down. The cashier came to the rescue.

“Of course you need milk!” she assured him. “You can’t eat cookies without milk! Let me get you some.” 

My mother-in-law was fretting, though, because she hadn’t brought enough cash for milk (and didn’t understand she could charge things to her room).  The cashier waved off her concern.

“Don’t worry about the milk,” she told her. “It’s a gift from Mickey. He wants Mister to enjoy his milk and cookies.”

When my mother-in-law told me this,  we both cried. She didn’t remember the name of the cashier, so I went to the front desk and thanked asked them to thank the restaurant staff for their kindness.

When we got on the cruise, warm cookies and a glass of milk were magically brought to my in-laws’ room every night at bedtime. Screen Shot 2018-09-29 at 11.52.44 AM.png

THAT’s why we keep going back to Disney. 

Yes, it can be a crazy, overwhelming place, but even for a family like ours (with proper planning) it can be the best vacation you’ve ever had, with people who work so hard to make magic for you. For families like mine — with parents exhausted from trying to manage and micro-manage every detail of the day, who have come to expect that people will not understand, will judge, or will let you down — this is amazing. That’s why my son and I talk about it every night when we’re walking the dog. It’s an escape, to be sure, but it’s also familiar and warm. It’s a place where burdened adults can be children, even just for a while, and where children who sometimes don’t feel confident can discover they are actually brave enough to ride Splash Mountain. 

Even though we talk and plan every day, it’s not likely we’ll be going back anytime soon (our finances don’t stretch to that, at the moment). But still, we dream. We talk. I help other people plan their vacations and live vicariously through them. In fact, I’ve actually thought about becoming a Disney vacation planner, so that I can help other families with special needs realize that spending time together on such a trip is not logistically impossible. I’ve done a lot of work in my life to improve services for people with special needs and mental health issues on a policy level. Maybe I could also create some magic for people at a family level. 

Families like mine need some cold milk, warm cookies, and a heaping serving of magic to keep going. Really, these days, we all do.

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?

The Leap

Sometimes the universe gives us a nudge. This summer, it’s been hurrying me along with a finger in the back, steering me in a certain direction. 

These summer days have been long, heavy, and wickedly humid. The sun is too hot outside; indoors, I move about in a perpetual twilight, with the shades drawn to keep out the heat. The weather isn’t the only thing that’s intense. There is an electricity in the air that transcends summer thunderstorms. It’s so much lighter and livelier than the oppressive heat. Have you felt it? It’s an energy. It’s like magic.

Something magical has happened to me this summer. I’ve revisited old ways of exploring my intuition and connection to the world.  I’ve tapped into a well of creativity I didn’t know was still there. I’ve surrounded myself with like-minded creative people who see there are different ways of doing things and different definitions of success. There are signs and serendipity everywhere — in forgotten songs I randomly hear; old friends who once again drift into my sphere; shooting stars; the peace I feel while writing. 

A few weeks ago, I wrote here about my need to take a deep dive into life — to leave safety and complacency on the dock, and jump in and see what the water holds for me.

I have taken the leap.

I am going to make my living by writing, as I’ve wanted to do since I was a child.

I feel naive and even a bit silly writing this. Who am I to think I can succeed at anything on my own, let alone this sort of endeavour?  

Well…who am I to think I can’t?

I was raised to believe things happen a certain way when it comes to careers and money: you go to school. You do well. And then you get a job…and you STAY at the job, because a job is safety. A job is identity. A job is status, and your future.

I started down that road. There were many wonderful opportunities, and I was ‘successful’. But somewhere along the road, a nagging little doubt crept into my thoughts: “Is this really what I’m supposed to be doing? Is this it? Is this who I am? Still, I stayed. That’s what we do, isn’t it? It felt too late to change paths. It would be too risky. I had a pension, security. I had responsibilities. I was climbing the ladder. A person can’t just jump off and start again. 

Then, I was pushed off the ladder. It felt like the end of the world, but as is so often the case, it was a gift. It’s been three years since my very good job with the government ended abruptly, and I took my first wobbly steps as a consultant. First, I worked under the umbrella of a wise and established mentor. Then, I left to take a contract with a non-profit. 

It was always meant to be something temporary: once Puck’s issues got sorted, I would go back to a straight 9-5 office job. I would figure out what I wanted to be when I grew up, and I would find security. I was looking only at what I’d given up — all those traditional notions about status, bonuses and job titles. 

I realized last year, though, that I couldn’t get back on that ladder. Puck’s issues weren’t going to magically go away. We would always need more flexibility than a traditional office job offers. The magic, such as it is, would have to come from me. I would have to make it for myself.

I spent a while feeling very sorry for myself about this. I compared my path to those of friends’. I looked at social media posts with envy,  comparing my own situation to their seemingly interesting and secure jobs. I saw only what I didn’t have.

This summer, I flipped that thought: I started looking at what I do have. I have freedom, and I have honesty.  The flexibility that is a necessity is also a gift. Through all the struggle we’ve been through, I’ve had to have a hard look at what is important to me, how I define myself, and how I define success. And for me, success means being creative. It means being content. It means telling the stories inside me, and helping others tell theirs. 

I’ve spent the summer revisiting a novel I began many years ago. Rewriting and discussing it with a trusted writing coach has brought me joy I haven’t known in any ‘professional’ work setting. It’s given me the courage to take the leap.

So how am I taking this leap? Well, I’ll be helping people tell their stories. All kinds of stories, in all kinds of contexts. That might include:

  • editing personal or professional writing;fullsizeoutput_289a
  • researching and writing documents;
  • preparing grant proposals;
  • creating content for blog posts or websites;
  • creating newsletters and communications materials;
  • writing articles;
  • writing your cover letter or polishing your CV;
  • presenting to groups small or large about mental health, digital health, and the history of social work in Canada.

Thanks to Danielle Crowell, I have a beautiful website that highlights work I’ve done (https://www.michellehebertboyd.com). Please share it with anyone you think might be interested, and keep me in mind for your writing and editing projects.  I have researched and written documents for government departments and national agencies. I have helped small non-profits create policies and communications materials. I have helped individuals edit work submissions, blog posts, and manuscripts. I can’t wait to see what other stories I can help bring into the world.

I am not brave, by the way. This is as much a leap of necessity and faith as it is an act of courage. I have to trust that the work will come, and have to accept that I may not be as financially secure as I was brought up to believe I must be. Ultimately, though, I have to believe that work isn’t just about making a living and getting to retirement; work is about creating a life.

This seems like a radical idea. I hope you’ll join me in it. Let’s create together. 

Breaking Up

It’s never fun, as a parent, to see your kids bullied by mean girls, or left out of social groups, or losing a friend. It’s a rotten part of parenting, but we can hope our kids have  the resilience to manage these social interactions (with our support) — to learn from them, move on, and find new places where they can belong and thrive.

That becomes a little harder when your child is dealing with mental health and neurological issues.

Puck recently spent a day with his long-time best friend — a boy he’s known since Primary, at his old school. I knew something was wrong when Puck texted me to pick him up early from the friend’s house (he’s usually begging to stay longer). He went straight to his room and shut the door.

It took him a few hours to tell me what had happened: his friend had told him he has a new best friend now.

Puck cried when he told me, and kept crying for a day. He’s still heartbroken. He has other friends, but this was his best friend, and was one of the few positive links he had to his old school. 

At times like this, I don’t know the words to make it better. I can’t kiss it and make it stop hurting. I am simply a sponge: I sit with him and absorb the tears, the emotions that are still too big for him. I add them to my own big fears and upsets, and squeeze it all out when I’m alone so that the sponge is ready again when he needs it. And he needs it, often.

Rejection is such a theme for us, lately. I keep trying to help Puck find the places where he’ll belong and thrive: friends, school, activities, the mental health system. We find rejection at every corner.

The same week his best friend “broke up” with him, he got dumped by his psychologist. This was the third psychologist in the past six years to suggest it just isn’t working out. Once, it was blamed (rightly) on Puck (he was uncommunicative and resistant to therapy). The second therapist, who Puck had actually warmed to, left the city. This time, the therapist graciously bowed out after eight months,  saying some version of “It’s not you, it’s me” (except, it was clear she really felt it was about Puck, not her). We were sent on our way, with a ‘good luck’ and not much else.

Therapy, like friendship, is an intimate relationship — especially for a child like Puck, who fears opening up about his feelings after years of feeling judged and rejected. We can’t expect friends to always be there for us, perhaps. But shouldn’t we be able to expect that mental health professionals will try their hardest not to underline the feelings of rejection and inadequacy that are already in play? It’s good to admit that you aren’t the right one to help, or that you’ve taken it as far as your skills allow. But if you aren’t the right one to help…who is? Where do we go from here? How do we find what we need?

We are back at the start, with no mental health support. Alone.

Puck is not unaware that he’s been rejected, again. He’s old enough to understand what’s happened; he understands his role in it. He also understands that he needs some support in working through his emotions and developing coping strategies. He knows he’ll need to find that somewhere, and that the whole process will begin from step one. That’s an exhausting prospect for him.

Where does this leave us? Well, I can go through the listings or get recommendations from friends or professionals I know, and try to figure out who might be a good fit. Then, we’d go through the screening process again, maybe even costly psychological testing again (out of pocket, because we’ve long ago maxed out our insurance for the year). And then, we’d once again spend months in the ‘getting to know you’ phase, watching Puck bristle at having to explain to adults, once more, what he struggles to understand himself.  We would be months away from any actual constructive therapy.

The other route available to us is to call the children’s hospital and go through their mental health referral process. We’ve tried this before, and I have friends who’ve recently done it, too. 

It did not go well.

It begins with a phone screening, during which the person reading from the script refers to you consistently as (you guessed it) “Mom”,  because you are obviously just a generic sketch of a parental-type person as opposed to an adult trying to hold together a family in crisis. After you have broken down in tears from frustration and their lack of empathy, you will be given an appointment with a mental health professional, anywhere from two to six months away. You’ll later receive a letter stating the time and date of the appointment. These appointments are in the middle of the work/school day, making it difficult (if not impossible) for many parents to accept them without losing work and pay. If you miss that appointment, your file is closed. If you request a change in date/time, you might be waiting another couple of months.

It’s not a system that’s friendly to financially marginalized families, or any family that doesn’t have the flexibility to get to an appointment in downtown Halifax in the middle of the day.

When months have passed and the appointment finally comes, you get asked all the same questions you’ve answered before. As a parent, you’ll be asked to fill in more questionnaires about your child’s behaviours and symptoms, and how it is affecting them and your family. A friend of mine had the awful experience of having the answers she’d written about her child (which she thought were confidential) read back, word-for-word, to the child. Not great for building trust at a time when emotions are already fraught.

At the end of the appointment, you’ll get handed some brochures and helpful websites to visit or books to read (at this point, I seriously think I’ve read every book and could redesign every website, especially since that’s the only help I can access in the months between mental health appointments). 

And then comes the moment of truth: what will they do with you? 

There might be some community-based resources they could refer you to — but too often, when this is requested, the professional isn’t familiar with the community resources available.

You could get sent to a psychiatrist or psychologist in the hospital’s clinic (I’ve never actually met anyone who was offered this option).

You can be referred to a phone-based family coaching program. This program is award-winning, and I personally have not taken it, so perhaps I shouldn’t comment. But I do know people who have taken it. Again, the times for the phone check-ins are not always flexible, so not helpful for shift-workers or for people with family commitments beyond this one child in crisis. Building skills and family resilience are absolutely important, but many I know who’ve taken this program came away feeling blamed; they left feeling it was their inadequate parenting skills that got them in this mess. If they just knew the right things to say, if only they behaved better, little Johnny wouldn’t have a mental illness.

(I bet they’re also referred to as “Mom” on those phone check-ins.)

You can be put on a waitlist for group support. For Puck, this would be a support group for kids with anxiety disorders (which is only about 30% of what’s actually going on with him). The group only happens a few times a year, and there is always a wait list for registration. So you’re looking at other six-12 months for that option. If Puck was offered this, by the time his place on the waitlist came up, he’d likely be placed in the group for 13+. However, he is immature for his age. He’d be better served in a group with younger kids, not teenagers. But that wouldn’t be an option. I know him — he would be intimidated by those bigger kids, and wouldn’t go. Another six-12 month of waiting, wasted.

Puck will start school in September, and his teachers will have the expectation that we’ll have conferences with his support team…which is now non-existent. I am, once again, his support team. It falls on me to be the expert in things I’ve never been an expert in. I will be the one to research possible interventions, to figure out why he is reacting a certain way, to try to find a path forward (at least I’m putting my social work degrees to good use, I suppose). We are fortunate to have a fabulous family doctor with a background and interest in mental health, so at least we aren’t entirely on our own. But realistically, we’re a good eight to 10 months away from any meaningful mental health support. 

Add to that the fact that even if we managed to get psychological help, there is no holistic approach. I certainly don’t expect someone to have expertise in all the issues Puck has going on: Tourette, learning disabilities, anxiety, depression. But there should be help for parents like me to put all those puzzle pieces together and find the experts who can help, who will talk to one another, who will see kids like Puck not as one issue to be treated, but as complex individuals with lots of things going on. I am SO tired of explaining, “This is probably not the anxiety, it’s likely Tourette…”. Someone else needs to help connect these dots.

We need a Tinder for mental health professionals… swipe right for ones that work with your specific issues, have actual availability, and won’t call you Mom.

It would be nice, too, if at least one of them asked how I, as the parent who lives with these issues 24/7, is doing with all of this. (Not. One. Ever. Has.) The generic “Mom” is supposed to be some kind of super-robot, I guess, who is capable of handling all the emotion, confusion and screwed up family dynamics, while managing to work outside the home, and function as an enlightened liaison between home, professionals, and school. 

Our mental health system claims to use an ecological/systems approach that considers the complex interplay between the client and their environment. I see little evidence of that. The effort to get kids through the system quickly and reduce numbers on wait lists means that kids are reduced to a single issue to be treated, not a complex mix of strengths and challenges. They are boxes to be ticked off; files to be dealt with and closed. They are widgets to be pushed through an increasingly dehumanized system, rejected out the other end, and sent back to Mom to deal with.

And ‘Mom’ has to be that super-robot, capable of providing support without any impact to her own emotions, because, too often, we’re the only mental health resource our kids have. 

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.