When chest pain wakes you out of a sound sleep and won’t go away … listen
When your blood pressure goes up to 144/100, but only intermittently … listen.
When the doctors say ‘your heart is fine, your lungs are fine, your chest wall is fine … follow up with your GP” … listen.
When your GP says ‘perhaps it is stress that you aren’t consciously aware of’ … listen.
I didn’t want to listen. I know what stress is, thank you very much. I’ve had two round trip tickets to Hell and lived to tell the tale – I know stress really, really well, and this ain’t it. My life is better now than it has ever been! How could I be suffering so much stress now
that I’d be in pain, unable to sleep, and feeling like my head’s about to explode … when I managed just fine when things really were
It just made no sense.
But my body would not be quiet. The pain got worse.
Listen, my body said. Listen to me. It’s time.
Time for what?
Time to finish the old work.
I’m too busy. Go away.
You are not too busy, and I am not going away. Listen.
I have things to do. Can’t this wait?
It’s waited long enough.
And so I booked myself off of work and sat down to hear what my body was trying to tell me.
Some days I feel like I’ve already lived two lifetimes. My first child died the day she was born (Valentine’s Day, 1995) from a severe neural tube defect. The pain of that loss changed my life completely – that’s when I really started to wake up and take a look at what it is to truly live, to be in the present moment, to really make the most of the time we are given. That was the first trip to Hell. Nothing in my whole life has ever hurt as much as saying goodbye to my baby – it felt like someone reached into my chest and tore out my still-beating heart. I got so tired of crying and hurting and missing her, it was exhausting and sad and unfair and it hurt
The Boy was born a year later, and things got better. His smiling face healed many of my sorrows – though the pain of my daughter’s death did not fully ease for several years, and once in awhile it still catches me off guard. Rarely now, though. She’d have been 16 this year. I do wonder what she’d have looked like at sixteen. She had dark hair and dusky skin and a round face, and she was beautiful to me, even in death.
Just before the turn of the millennium, my marriage started to fall apart. My husband, The Engineer, who had always been a fairly even tempered kind of guy, suddenly became insanely jealous and controlling. I tried everything I could think of to mollify him and keep him happy – I gave up my friends, I stopped going to the gym, I kept my opinions to myself … and I slowly died inside. We went to counselling: it didn’t seem to make any difference. Eventually I moved out in a last-ditch effort to save the marriage: perhaps, if we started ‘dating’ each other again, and weren’t faced with the multitude of challenges of living in the same space every day, we could put things back together. For the sake of The Boy, too, we had to find a way to live peacefully – even if that meant living in two households.
It wasn’t until I was in my own condo with the door safely locked behind me that I realized I’d spent months huddled on the very edge of the bed, unable to relax, even in sleep. I was so afraid of him, yet he said he loved me, he never hit me, and I could not articulate the source of my fear. All I knew was that if I was meeting him for the first time, now, I wouldn’t have had anything to do with him. In five short years he had gone from the love of my life to a total stranger, and I had no idea how this had happened.
Just before Thanksgiving he was admitted for what they assumed was a nervous breakdown of some kind. I wasn’t there – friends of his took him in after he started acting strangely during dinner at their house, and I was asked to stay away lest my presence make things worse. The next day I got a phone call at work: it was the neurologist who’d examined him, and she had bad news. “He has a brain tumour,” she said, “and he is refusing to let us contact his parents.”
And the conductor shouted “All aboard for Hell!”, the train whistle blew, and I was dragged on board again.
Thus began the worst years of my life. The tumour was located in the part of the brain that governs personality, which of course explained why he had changed so drastically from the person I had known. This also meant that for the rest of his life, I had to deal with a complete stranger whose brain was scrambled in a way that made him utterly self-centered and with no trace of empathy for anyone … not even his own child.
I probably could’ve found a way to work with that stranger, though it would not have been easy. I did try though - when we realized what was going on, I moved back home to care for him. I took my vows seriously: in sickness and in health
. I leased out my condo, quit my job and borrowed money from the bank and from friends to buy him all the fancy toys he wanted for his ‘last go’ – including a Lexus SUV. We lived in Fort McMurray and he was employed by one of the big oil companies there … I knew that his disability pay would cover our living expenses, and that when the inevitable occurred, life insurance would pay the bills for his toys. We’d be fine.
A month later, his parents stepped in and reclaimed their son with the ferocity of a pack of wolves fighting a stranger off their territory. I was to blame for his illness – I was a bad wife, I stressed him out, and stress causes cancer. I know they were hurting parents who needed someone to blame and I was the convenient target but oh, the drama that ensued.
I was kicked out of the house: he had a friend convey his “need” to have the house to himself, and didn’t blink when I said if I was leaving, The Boy was coming with me. He wasn’t allowed to drive and didn’t want the Lexus anymore, so I should just keep it – though I couldn’t possibly afford the payments for it, nor the fuel to drive it. I was unemployed, and having been a contractor I had no EI, and I was faced with the costs of setting up my own household again.
In less than two weeks, I found a job in Edmonton for half the pay I’d been making as a contractor up north. I rented an apartment and moved my own things out of our house – the spare bed (which I’d had as a girl), my son’s things, the every day dishes and cutlery, a few pots and some Corningware, a fold out couch I’d had in university and the old table from out on the deck. I left all the ‘good things’ behind without a backward look, blessed the salesman who gave me a good trade on the Lexus for a 4Runner, found a daycare for The Boy, and went to work.
The next two years were one crisis after another. I was served with court papers demanding regular visitation and I offered generous terms (every Saturday and every other weekend from Saturday morning until Sunday night) and was granted my request that all visits be supervised, in light of the medical issues at play. As The Engineer was effectively living with his parents, this wasn’t really a big issue, though it was perceived as a grave insult.
See, The Engineer and his family chose denial as their coping strategy, and I chose to face the truth. He was fine! How dare I suggest otherwise! Then they found out that I also chose to tell The Boy the truth as I understood it: I showed him the scans and the huge mass in Daddy’s skull. Even a child could identify it as ‘wrong’. I told him that the doctors would try hard to fix it, but this kind of tumour isn’t the kind they are able to fix. Nobody knows when, but probably before you are big, Daddy will die. He accepted this calmly, as most children do. They can handle the truth – it’s the lies they can’t accept.
I refuse to lie to my child. However, his grandparents were appalled by my candour and told him I was wrong. There’s no tumour, it went away!
He didn’t believe them, but was confused by their strange pronouncements: a kid who is in the middle of potty training recognizes both a commode chair and waterproof pads … so why was Grandpa telling him that the commode chair was just a garbage can and the waterproof pads were just to keep Daddy from slipping in his seat? Every week I spent the drive home from their house trying first to follow my child’s convoluted narratives to figure out what he was talking about, then reframing things for him so that he would still be able to love his father and not be crushed by his grandparents’ lies.
At Christmas time, for several days they told The Boy that Daddy couldn’t come to the phone because he’d lost his voice. They never mentioned that they wouldn’t be at the school Christmas concert, they just didn’t show up: when we called, they said they didn’t come because it was raining. After a week of the stories not making sense, we finally realized that The Engineer was in the hospital – but he refused to see The Boy. I don’t suppose I will ever know why. I was just the enemy and had to be kept in the dark at all costs.
Eventually, the tumour made it’s last charge: The Boy told me that Daddy was now in a bed in the living room and not talking to him. I explained that it wasn’t because he didn’t want
to talk, it was because he couldn’t.
The next weekend, on our way there, The Boy quietly said from the back seat, “Mom, do you think my dad will talk to me this time?” I told him, sadly, that he probably wouldn’t be able to. A few minutes later that same quiet voice said, “But it’s okay to hope, right?” It was all I could do to see the road through my tears.
Daddy didn’t talk to him that day, and before The Boy’s next visit, I got a phone call at work. It was “a message for The Boy”, he said, “Tell him that his Dad died this morning.” That was it. The Boy wasn’t allowed to go say goodbye, his father was cremated, and I was told that we were not welcome to sit with the family at the funeral – I should stand at the back of the church. I didn’t … I sat at the side with my own friends and family, and during the Sign of Peace I carried my little boy over to shake hands and offer peace to those who had treated us so badly for so long. The priest had to wait for us to get back to our seats before he could resume the service. It was a small victory, in the heaping coals of flame on their heads
kind of way.
Then my child support payments stopped, and I was told that nothing could be done until the will was probated (this is patently untrue, but I had no money to pay a lawyer to get it sorted out). The Boy asked for some of his toys and a few mementos of his father, and we were ignored. Eventually, a few things showed up on our doorstep, but it was all so difficult, we just gave up and did without.
When the will was sorted out, a year later, the back support was paid up and regular payments resumed, but that year had been long. When I was finally able to get the value of The Boy’s actual inheritance (and this took me more than a year and the intervention of a lawyer), there was so little there I was shocked. The generous life insurance was not left to him. All the costs for two funerals were taken out of the estate (i.e. The Boy’s inheritance), not paid for by the insurance money (wherever it went) nor from the bank account that had been made joint with The Engineer’s father for convenience during his illness. So much disappeared … and all I could think was that The Engineer could not possibly have intended for things to end up this way. But, by the time the decisions were being made, he was not himself anymore, and his parents’ hatred guided the decisions that were made. Apparently it didn’t occur to anyone that if the household the supposedly-beloved-grandchild lives in is short of money, the grandchild suffers too, and that sending a card that says “we love you so much” with a Lego set a couple of times a year doesn’t really make up for the hurt that has been done nor the lies that have been told.
Eventually the drama quieted down, though it never really did get resolved. The original child support order is not legally enforceable, because it has The Engineer’s name on it: we need a judge to scribble “The Estate of” in front of his name and put a new stamp on it and then it’ll be legal again, but I’ve been unable to get this done in the five years I’ve been trying. The last time we tried, we got a year and a half worth of post dated support cheques instead … which was fine, except that the year and a half ended in January 2011 and there aren’t any more cheques and none seem to be forthcoming. So once again, I’m paying a lawyer to try to enforce my son’s father’s wishes, because the “loving grandparents” are too angry to see that hurting me
hurts The Boy
And so here I sit, with my chest tight and my head aching, off work for however long it takes to get all of this sorted out in my head and to get my body’s alarm system reset to a lower threshold. My counsellor describes it as Delayed Post Traumatic Stress Disorder, and that rings true.
I’m trying to help my body let go of the tension and fear: it’s safe now, but I’ve run at high throttle for so long it’s a lot of work getting my body to reset. This will take some time and a lot of concerted effort.
I’m also trying to find the path to forgiveness, but it is a difficult road. I’m still really angry at the injustice of it all, and I long for things to be made right. I can’t change the situation, though, so I have to change my outlook. It’s not easy, but I’m working on it. It’s the only road to peace.
So why write this? Why go through all of the old stories again, feeling the hurt and pain anew?
Because I am a Scribe, it is part of who I am. Tell the story and heal your past.
By listening to me here, you help me heal. Thank you for your courage: my stories are hard to hear, and I know it. They’re hard to tell, too.
May we all find the path of forgiveness and peace.
It's now 2017: I have, indeed, found the path of forgiveness and peace: I even wrote a book
My body has been permanently changed by the trauma I survived, and my PTSD is chronic and complex. However, my soul is at peace, and I am content.