My mother would only let the paramedics take her to her chair in the front room. She wouldn't let them look at her so they went away. For the next two weeks she sat in that chair, with my father bringing her a bowl to use as a toilet and a bowl to use to clean herself. Every night, she prayed to God for a miracle, for her leg to mend itself. She felt a fear so great that to permanently cripple herself was the safer alternative to venturing out of her own house. My mother is agoraphobic.
It might seem strange to other people that our family didn't make her accept the help of the paramedics, or cajole her into going to the hospital for her own good. But when you've spent years living under the shadow of a condition as powerful and all-encompassing as agoraphobia, it becomes an opponent seemingly unbeatable. Its warped logic becomes terrifyingly clear and bright and powerful.
In the end, we made a doctor come to the house - she had no choice but to see him. I was sure she'd be happier, relieved, but after he left she shook with the rage and the fear she felt. And she burnt with a hatred of us for having betrayed her.
While agoraphobia is a terror of open spaces, of unfamiliar places, it also means so much more. It holds total tyranny over the life of the sufferer and the lives of those around them. And agoraphobia doesn't just happen when the sufferer takes a peep and a tentative step out that door. It's not like a fear of spiders or cats or flying. You can avoid those and still live a "normal" everyday life. For my mother, everything spins around her fear. For the greater part of her adult life, the reach of her existence has stretched no further than the garden gate. Her house became her empire, a mansion of fears. And a reminder every single second of the paralysis of her life.
Strangers scare her (she has hidden in cupboards when tradesmen have come to the door, and I could hear the fear in her voice when I suggested I bring my new girlfriend to visit). But the known scares her too. It's hard to have a positive outlook when everything has the capacity to blacken around you.
I was the youngest of her four children - I appeared on the scene in the summer of her fortieth year, her nineteenth year of captivity - so I arrived into a world where my mother's "condition" (illness, disease, state of mind?) was so thoroughly normal it was never mentioned at all. When my mother was in a bad way, we shrugged or cursed her for "another one of her moods". When she railed against the world for the damage it inflicted and locked herself in rooms with vague threats of "killing herself if she had the strength" we listened at the door, holding our breath the better to hear the reassuring sound of her sobs.
Children can't understand such things - I didn't. When I was little I used to avoid her as much as I could, and hated her a lot. Silence, hysteria, no-one allowed to come near the house; when you're young you cope because it all seems normal, so you just deal with it. But today I'm still shocked and shy in busy, sociable households. I am carved into the shape of a loner.
The house was not a home so much as a mission - to classify and order, to control. It was all she had and she guarded it jealously. Visitors were not welcome. With our house several miles out of town, I'd await the start of the school holidays in July knowing that I would not see anyone till September.
Thursdays were her worst day, and so they were mine. Thursday was the day that she would religiously clean the bedrooms, and religiously each week she'd upset herself. My brother and sister were the untidy ones by nature but no worse than all the average teenagers. And every week I'd be first home from school and I'd find her, crying, sometimes searingly silent, sometimes screaming and crashing around at the mess that she found. As I was first home, I always got the full weight of her tears and her anger, which had blown itself out by the time my messy siblings straggled in. Even now, my girlfriend berates what she calls my own "obsessive" need for tidiness.
There were no holidays, no swimming lessons, no Scouts - nothing that most of the people I meet take so much for granted in their own childhood. As a child I didn't mind, I did not know what I was missing - it's only today when people laugh in disbelief at my lack of achievements that it really stings. My mother was agoraphobic and my father was always out. He came home home at midnight everyday bar Christmas. He had a lot of work to do. But I can't blame him. Everyone in my family has abandoned my mother over the years. We visit, we write and sometimes we talk on the phone. But we had to get away, from her and from each other. For our own survival. Living with a mental illness is exhausting in every way, - the more so if everyone has to keep up the facade of normality.
But, for every one of us, everyday, even now, living with agoraphobia is living with guilt. Living with our own failure to help her and living with the knowledge that she is still there while we struggled from her wreckage and went off to live our own lives.
Her panic attacks started soon after she gave birth to her first child, my big brother. Agoraphobia crashed into the mundanity of her everyday life, and began to eat away at it. She was going to the Gas Board to pay a bill, then on to the shops for the usual bits and pieces. Within the turning of a moment a panic attack came on her and she knew, irrevocably, that she was going to die. Sometimes, I worry I might get like her, and I know my sisters feel the same way. It's a double terror - fear of being like her, consumed and blinded by this darkness, and fear of understanding what it would be like to have to deal with me, that I would make people suffer. My mother knows that she has damaged us in the midst of her own damage and her guilt is just another burden. The other fear, of course, is that my loved ones might abandon me like I abandoned her.
Her agoraphobia began at a time before therapy and psychiatrists were fashionable. Her own mother was ashamed of her and shouted and cajoled her. After a brief try with the medical profession, my mother's fear got the better of her and she decided to just ignore the problem. No-one commented on her "strange behaviour"; when each of us in turn began to see it wasn't normal, we all just went in on ourselves. We were taught for years never to face it, and now the weight of the pain of her life would just be too great to bear. So, you do the little things, ease the tiny burdens if you can. Years ago, when I was doing my A-levels, we were all given two weeks study-leave for revision. Of course, it was a Thursday when I went home and told her and she railed at me and screamed and cried and told me she was going to take me out of that school. She could not bear the corruption of her known routine. So, I didn't mention it again.
Instead, each morning of that two weeks I got up, as normal, put on my school uniform, as normal, and went out. I spent the days sat by the river, or in the stall of a public toilet if it was raining. And then I came home again at four o'clock. As normal. At the time, I was angry and hurt and felt terribly unwanted. But it was a small thing to have to do in the face of her great nightmare.
I'm 27 now and moved away years ago, but to this day I can't begin to imagine what it is like for her. And I don't try. I can't just hate her because now I'm an adult and I understand she's ill and that nothing is as simple as it seems to a child. But the added complications just make it harder to know what to do with all the stuff inside yourself. I try to avoid the subject. How can you not, when this person you love so much, despite everything, has suffered so much every single normal, boring, mundane day of your life and you've never been able to do anything significant to make it stop. And yet, with the passing of the years, I find myself thinking more than anything of her great strength in managing to bring up four children in the face of a disabling mental illness that no-one ever really acknowledged.Reuse content