Is it ok not to be ok?
Not really. Not when your wife is dying. When her brain has been invaded by a task force of tumours. When she can’t move her left leg and when the steroids have wreaked havoc on her personality. (The same steroid, by the way, that is now the great hope for treating Coronavirus).
She may have weeks, months, or even a year to live. Just weeks ago was active healthy and literally full of life. Walking, talking, drinking, telling stories, and engaging everyone she met.
Today she is in a wheelchair and can walk only short distances with the aid of a cumbersome walking frame. She is angry. I don’t blame her. So am I. She’s just 51 and this cancer has been a ubiquitous bitch. We thought it was beaten — first from the lung, then from the neck.
Now it is doing all in its malevolent power to beat us. Again and again and again.
It’s not about me. Except also it is. It’s about all of us in different ways. My wife, me, my two sons and two daughters, my in-laws — and everyone who is close to us. Even the dog who senses a confusing change in the household’s atmospheric pressure.
My wife is dying. Not only is she dying, consciously aware of the weight of every ticking minute sliding irrevocably by, but she is now — suddenly — partially and perhaps permanently disabled thanks to a seizure triggered by the pressure from one of the 10 stealthy tumours blooming in the back of her head.
My wife is angry. Not just for the obvious reasons. But because of how she was treated in hospital and by us while suffering steroid psychosis. For several days, she was virtually locked inside herself, unable to talk or move for extended periods, and agitated, paranoid and aggressive when she wasn’t.
My wife is strong and determined. She wants order in the chaos, no loose ends, no slipping of standards nor cutting of corners. She wants to leave a legacy of perfect project management and strong values. A well-stocked garden, a neat house, things for the kids.
So now, back home again, she is a flow of dissatisfaction. With the state of the floors, with how I move her leg, with the design and running of the kitchen, with the way I handle the wheelchair, with a rising tide of my personal inadequacies: my financial incompetence, selfishness, and even my well-documented limitations in the DIY sphere. I feel like a member of staff — dispatched with a sharp word to provide services I am apparently ill-prepared for.
She issues a stream of demands to be fulfilled immediately. She produces handwritten notes for drinks and food. There are lists for everything. And a growing collection of plastic bags filled with a diverse range of supporting materials necessary for some unspoken progress which must always be close at hand.
I try to be supportive and patient. But I quickly fail and it’s getting worse. I hurt when she cries in frustration, hurt each time she shouts at the children, hurt when I see them retreat more and more into the safety of their bedrooms. First struggling with the idea of losing their mother, then with her anger, then with my frustration, anger, and hurt. They seem to support me more than I can support them. And that in itself is unforgivable.
So, I am not ok. I’m not ok that I am losing my wife. That she is in such despair. That she feels so full of guilt for dying. That I am failing to help in the right way. That my patience is so shallow. That her anger and my lack of understanding will eclipse the quality of time we have left. That we only have so little if that time left…
And I realise that the person I depend on when I’m not ok is also not ok. It is her. And I cannot talk to her. I can’t even breathe a heavy sigh in her presence that she would normally instantly alert her that I was on the cusp of another, rather pathetic cry for help.
I do not know what to do, how to feel, what to say. I watch from inside my head and am aghast at how badly I am handling it all. It’s like watching a film and shouting at the screen for the character to get a grip. “Can you not see you are doing the exact opposite of what you should be?! WTF!”
So I’m not ok and it’s not ok. Nothing is ok. Ok?