It has been approximately one year since I last experienced the emotion of joy.
I don’t mean that I’ve been miserable non-stop, or even that I haven’t been happy.
I have a lot in my life to feel grateful for and to enjoy, from my kids to the weightlessness of water when I swim.
But if I want to think of a time when I felt unadulteratedly happy – truly joyful – it’s last summer.
I was sitting down with a friend and the husband of another friend (who is a sound technician) to record the audiobook of my novel. And my friend read the book so well, and it just made me so happy.
Things have really gone to shit since then.
For one thing, the book never got done. We almost finished it… but life started getting in the way. My friend returned to work after mat leave and it got harder to schedule times when we could record and she obviously wasn’t enjoying the sessions much so I just dropped it.
I’m not sure I did it fast enough, though – our friendship never returned to what it was before we started the audiobook.
I don’t even know if that’s related – my friend is busy as hell with work and motherhood, and sometimes people just get busy and don’t have room in their life right now.
God knows my life is full enough, so I know how it is.
But if you’re like me, and you have a history of pissing people off without even knowing why and finding out it’s because you said something and they thought you meant something else and so they just decided to, like, dump you from your life… well… you tend to fret over stuff like that.
It’s the kind of thing you chew over and get weepy about at two in the morning when you can’t sleep.
Or it is for me, anyway.
Anyway, I had bigger problems than audiobooks and busy friends.
…Which is probably one of the reasons why people are drifting away – my family has been in crisis mode for YEARS now and God, that must be exhausting for people. I can’t blame them for wanting to get away from it.
Anyway, PH’s depression was as bad as ever and his ability to do work around the house or look after the kids was pretty much nil.
I was obviously cracking under the strain so we made yet another call to my mother in law to please come out and help for a while.
In the past, my mother-in-law’s visits were delights because she is delightful. She genuinely seems to enjoy cooking breakfast for children in the morning, which to me is like walking on LEGO.
But this time was different.
My husband was sick of our kids sharing a room and he wanted our third bedroom, which we used as a book/computer room, cleared out and turned into an actual bedroom so Owl and Fritter didn’t have to squash in together anymore.
It was a noble goal, and between him and his mother, it was achieved. But it certainly didn’t relieve my strain.
If anything, coming home and finding the house upended, my mother-in-law exhausted from lifting more stuff than a woman her age should be lifting, and stacks of papers everywhere increased my anxiety.
Maybe if we had known, at the time, that I’m probably autistic, PH would have been more understanding about my stress regarding the total reorganization of the upstairs. But we didn’t, and I couldn’t seem to make him understand that this was the opposite of a vacation for me.
Rest, for me, is stability and lack of responsibility. This was neither.
Especially since when I tried to rest, PH would barge in and order me to help – please grab that stack of books and go file them, please order a pizza, because my mother has done enough work today. That sort of thing.
Plus, I absolutely couldn’t handle moving my daughter into a room that didn’t look like a BEDROOM so I insisted not painting it, which thankfully a friend helped me do.
When I did get time to rest I couldn’t really because everything was topsy turvy.
But they achieved the impossible and shifted our hundreds and hundreds of books onto shelves in other places and Fritter was delighted with her new room, so it was all in all a good thing.
Just… a really stressful thing.
And then my mother in law was gone again and I was worse than ever. PH, exhausted from the effort of rearranging the upstairs, went back to sleeping all the time, and we were at square one again.
I tried anti-anxiety medications – the doctor put me on SSRIs as well as my Welbutrin – but at first they made me worse. I lost my temper with the kids and shouted at them, which then made PH shout at me because he strongly believes that children should not be shouted at.
He’s not wrong, but it certainly added to the family tension.
Then when the SSRIs finally took full effect I ended up feeling… nothing. I wasn’t crying at night anymore but I also lost interest in… everything. I could barely bring myself to finish editing my book and get it published. I certainly couldn’t write anything new. I didn’t feel anything.
I certainly didn’t feel GOOD. I was still unhappy and anxious. Just… in a flatter way.
When my father died in February, I didn’t even cry.
That’s when I put the SSRIs away for good.
My father was the world’s sweetest man.
He was handsome, he adored my mother, and he adored me.
He was a successful banker who never really liked his job but considered it a necessary evil and he always did it to the best of his ability. When we moved to Curacao, he taught himself Papiamentu – the local creole – so he could speak with the local employees in their mother language.
I can’t remember receiving a single critical word from him in my entire life.
And when he died, I had no tears to mourn him with.
Mind you, that’s not all the SSRIs. Sure, they made me feel a little flatter, but Dad’s death was as much a relief as anything else.
His Alzheimer’s had stolen his ability to play guitar, then his ability to walk, and finally his ability to speak. He knew who I was – he could still manage a “goodnight, kitten,” when we tucked him into bed – but whatever thoughts were in his mind died mid-sentence. He couldn’t dress himself, use the toilet himself, or speak for himself.
Dad was always a vocal believer in euthanasia. He thought it was cruel to prolong the dying process, and he believed strongly in death with dignity. And yet I couldn’t give him that.
Eventually, he gave it to himself. He closed his mouth and stopped taking pills, food, or liquid. So we accepted his decision and let him go.
In the days after his death, it was hard for me to feel sad for him when I was also happy for him. And his presence was so strong in my mind – my memories of him as a younger man suddenly felt near and clear – that it was hard to accept that he was even gone.
I cried once – when they gave us his ashes and I held the box and felt the weight of my father’s skeleton, reduced to a fine powder, and they handed us his wedding band. I had never seen it off his finger.
That… that was hard.
We returned from our three-week-long trip to Nova Scotia in early March.
In late March, Beloved Dog died.
He was 14. He had heart disease. We knew his time was running out. But one day he was scrounging french fries on the beach, and the next day he was turning his nose up at food.
His kidneys had suddenly shut down. And when, after two days of IV fluids and anti-nausea medications, his kidneys failed to recover and his lungs began to fill with excess fluid, I took him into the vet clinic and did for him what I was unable to do for my father.
At least, by then, the SSRIs were out of my system and I could cry for him. My baby dog, who had accompanied me through my twenties, through two relationships, a marriage, and two children. He was a part of my identity, in a way. And now he was gone.
Then, in May, PH’s father died suddenly of heart failure.
My father in law’s death was the opposite of my father’s – he didn’t even know he died, it was so sudden. But that made it all the more terrible and traumatic for his family, especially his wife who was with him when it happened. While my mother spent years slowly taking on responsibilities as Dad’s disease progressed, my poor mother in law was totally unprepared to become a widow on a sunny day in May.
PH spent days and days going through his father’s study, looking for life insurance, while his eldest brother helped try to figure out the banking situation.
…2018 has not been a great year for us, is what I’m trying to say.
There have been bright spots, though.
Beautiful days spent at Cultus Lake, floating in the cool water and looking at the mountains.
A family camping trip to Leavenworth, where I could – and did – spend hours swimming in the Wenatchee River, absolutely blissing-out on the feel of the water rushing over and past my body as I swam against the current.
It wasn’t quite joy. But it felt very good.
Most days, though, that vice of dread is firmly in place around my heart and I live each day quietly suppressing the absolute terror that inhabits my every waking moment.
While I’m still not officially autistic – I have an assessment booked for November, so we’ll see how that goes – my autism is considered basic fact in our household these days. It actually solved a lot of problems that PH and I had with communication.
“Now I know that you really aren’t being passive aggressive when you say those things that hurt me,” he said once.
“But I always TOLD you that I just meant what I said and didn’t intend any of those arbitrary layers of meaning you kept slathering onto my sentences,” I said.
“Yes, but now I believe you,” he said.
Similarly, if he had known I was autistic back during the Great Room Upheaval of 2017, he would probably have had more patience for the way I seemed more irritated and upset than grateful for all the hard work he and his mother were doing.
Autistic people don’t like change.
We like routine. We like stability. In a world where things often seem to happen unexpectedly or for no clear reason, we like as few moving parts as possible. It’s too much to track, too much to follow, too much to figure out.
…My life has a LOT of moving parts.
I have the kids and all of their stuff which they constantly move around and leave places and then expect me to know where that stuff is when they want it.
I have my dog training business which is an absolute snake’s nest of appointments and clients and emails and voicemails.
And then there are all of those basic adulty things that people are supposed to just be able to, like, do… like laundry and dishes and sweeping and cleaning the bathroom. And back when I didn’t have the moving parts of the kids and the dog training I could dedicate some time to those things although I did it poorly. But now it’s just like hahahahahahahaha no.
PH has been out of commission almost entirely for the last year or so. It’s rare, now, for him to be able to cook dinner or run laundry. He sleeps a lot, or lies in his bed and looks at his tablet. Whenever he tries to do more, his mood crashes and he’s forced to crawl back into bed.
He’s house-bound and often lonely. The only way he can socialize is if people come to him, and since all of our friends our parents now, they can’t come over without a babysitter, and that’s just too much trouble. Our house is too small – and let’s face it, filthy – for kids to play comfortably in, and we never had much room for social gatherings anyway.
So no one comes over, now.
I’m lonely, too.
It’s lonely to get up with your kids in the morning while your partner sleeps. It’s lonely to feed your kids dinner while your partner sleeps upstairs. It’s lonely to sit downstairs at night while your partner sleeps upstairs. And knowing that it’s because he’s sick doesn’t make it less lonely.
But when he’s awake, he’s a wonderful father and a loving partner. You just need to go visit him in the bedroom if you want hugs and a few kind words. The kids often “go visit Daddy,” when they want some special attention. Sometimes I’ll lie in bed with him and we’ll watch a show or something on his tablet – he can’t usually make it downstairs to the TV.
But without PH to stabilize my life – to put things away and tidy and plan – I live with gripping anxiety.
I’m dog training full-time now. I had to leave the vet clinic because my hours just didn’t work. PH couldn’t pick Owl up from school or take care of the kids until I got off work at six.
Some good friends were doing that for us multiple times a week. I got in the habit of simply going to their place for dinner and maybe a board game after work, but that often meant getting the kids to bed late.
Plus it meant putting a heavy burden on my friends. I couldn’t expect them to act as my unpaid after-school care providers indefinitely. And the vet clinic simply couldn’t offer me hours that worked with a school schedule.
So now my primary income is the dog training, which some supplementation from my book sales.
Here’s the thing with the dog training.
WHEN I am training a dog, I enjoy myself. I often enjoy my appointments.
I hate everything else about it.
The training sessions wear me out. I’m emotionally exhausted from being “On” and active.
But worse – the training session are irregular.
*Cue horror music*
Every. Single. Day. Is. Different. From. The. Last.
It’s a nightmare.
One day I have two appointments. The next day I have one. The day after I have three. All are at different places with different people.
And who is booking those appointments? ME.
I have to carefully construct a schedule for every single day. Nothing is ever routine, or taken for granted. I have to build each day block by block, time slot by time slot.
It’s like a game of Super Mario where you’re jumping from one moving plank to another. You constantly have to look ahead and time each move. There’s nowhere I can blindly step knowing what is going to happen. There’s no routine I can lean into, no stability to take the burden.
For some people that might be annoying, or exhausting. For me, it’s terrifying.
It feels like I’m trying to make my way down a cliff. And if I don’t watch where I put my foot with every step, I’m going to fall.
And I get so tired that sometimes I just want to close my eyes and let it happen.
And there are voicemails to answer – God, I hate those. I ignore them for days, which is GREAT business practice I’m sure – and emails and texts.
I have to call people back and put their information into my invoicing system and confirm their appointments and calculate travel times and contact people and ask if I can move their appointment 15 minutes because my appointment before them is further away than I thought and I’m not sure I can make it from point A to point B in time.
I’ve turned off my google ads but people keep contacting me. And we need the money – GOD, we need the money, so I can’t bring myself to turn them down. I’m driving to downtown Vancouver one day and into the Fraser Valley the next.
I have Saturdays at home with my children.
Every other day of the week they’re being cared for by someone else. Monday through Friday they’re in school/daycare until I pick them up – which I can do, now, at least. On Sundays I leave them with a rotating schedule of friends so I can train dogs for people who aren’t available Mon- Fri 10-2.
I’m constantly – constantly – fretting about my schedule. Who has the kids this Sunday? How many appointments do I have? Can I fit in another one?
EVEN THOUGH I REALLY DON’T WANT TO?
And the pathetic part is it’s not like I’m even THAT busy. I’m still not really making enough to make ends meet. But unless I want to give up that one day a week with my children, it’s all I can do.
Every now and then I get a day where I have no appointments, and I aggressively do nothing for those precious hours when Owl is in school and Fritter in daycare.
But quite frankly, I need a lot of downtime to recuperate from the crushing anxiety of simply existing without a stable schedule and it isn’t enough.
Then there’s the house situation.
Mess REALLY bothers me. Clutter and disorganization eat at me – I fret about those books on the floor getting stepped on. I worry that those important papers will get lost. I wrinkle my nose at the smell of the garbage.
But can I do anything about it?
So the books DO get stepped on and the papers DO get lost and it makes me FREAK OUT.
For someone who loves to be in an organized tidy environment I really really suck at creating organized tidy environments. I create mess constantly – as do the kids – and that same mess makes me so anxious I can’t relax in my own home.
Don’t ask me why I can’t just put things away, because I don’t know.
I know that I can and DO put some things away – if they have obvious places where they go. I take dishes that are clean and put them with the other clean dishes, for example.
But most things don’t have obvious places where they go and then I’m paralyzed.
Or things just get so messy that I don’t know where to start and I’m overwhelmed and just looking at the mess makes me feel like I’m being knocked right off of that cliff I’m clinging to.
So, basically, not only do I feel like I’m clinging to a cliff – often during an earthquake, when something happens to rattle the tenuous routines I do have – but rocks keep falling and I don’t know how to dodge them.
Dad and Beloved Dog were big, BIG rocks.
The constant clutter, the worry that my children will end up as messed up as their rooms are, the dirt, the emails, the phone calls… are a constant shower of scree from above.
There’s only one reason why I haven’t fallen off that cliff into utter breakdown.
Those same friends who were picking up my kids and feeding me regularly when I was at the vet clinic got used to me hanging around. They’ve adopted my family like we’re some stray kittens they found and got attached to.
When I’m too exhausted from smiling and teaching people how to stop messing up their dogs, when I feel like every single object in my house is screaming “PUT ME AWAY!” but I don’t know where anything goes and the thought of going into that house is just too terrible to bear…
…I can ask them, “what’s for dinner?” and they’ll say, “dunno, pick up some buns and by the time you get here we’ll have something figured out.”
And they genuinely seem to like me. They miss me if I don’t come over for dinner on a regular basis.
Like… I’ve had a lot of great friends, but people have lives. And their lives can get really full. I know mine is.
But this family had room for us in their lives. They just added two kids to their number of children and added me as a secondary wife/mother and told me to pick up some buns on the way over.
That saved me.
When I’m at their place, dinner is served and dishes are washed. Fritter is told, “come sit over here so your mummy can eat in peace.” My friend’s husband hands me a Diet Pepsi. The kids all run off to play with each other. The grown-ups complain about Trump or play board games.
My own contributions are things like wiping the table or setting up a game of Dominion. Small, simple responsibilities that I can handle. And if I can’t, that’s okay, they’ll do it.
It’s not my home, not my stability, not my routine, but it is still the most stability and routine that I have in my life right now and it’s the thing that catches me when I start to slip.
These people are my safety net.
So that means I also live in fear of losing them, fear that they’ll get sick of me and drift away like so many people do.
And then there’s my husband to consider
In order for me to go to The House Of Rest, I have to leave PH behind. Don’t get me wrong – he’s welcome there because they, like pretty much everyone who has ever met PH, adore him. But it involves leaving the house and being exposed to other humans and their children and PH just… can’t.
So I always feel like I’m choosing – do I choose to be home with my partner but swamped by overwhelming responsibility and chaos, or in someone else’s home, surrounded by routine, being cared for?
Do I live my own life, or mooch off someone else’s?
I’ve been treading water for years, now, while the Sharks of Sudden Change constantly circle around me, and I’m both scared and exhausted from trying to survive it.
My adoptive family provides a lifeboat when I need to rest, but it’s only ever briefly. Next thing you know it’s time to take the kids home to bed and it’s splash – back in the water.
There are a lot of things that I love about my life.
I love that I train dogs for a living – just what I dreamed of as a kid.
I love that I’m a writer, with fans. Also what I dreamed of as a kid.
I love that I have a boy and a girl, and they are awesome and I like them both as people.
I have an adoring partner who tells me that he loves me often.
I have an amazing support system of friends, and even more friends who I may not see regularly but who I know would – and have – come rushing to help if I called them and said I needed them.
I’m not unhappy with my life. Not from the big picture.
But I do miss safety. I miss security.
I miss relaxation.
I miss joy.
And I’m exhausted and scared as hell that I’m going to fall off of this damn cliff because at some point, surely, I will fall asleep and something terrible will happen.