‘A Time Life Showed Me I Wasn’t In Control’
I was 28 years old when illness flattened me. It had been coming for some time. The doctor faithfully took notes of all my neuroses over the years, and sent me away time and again with little more than a pat on the head. I’d already started using a cane just prior to my health crashing. It was a humbling experience having to purchase and walk around with a cane, as an officially ‘healthy person’; a healthy person suffering from vertigo so severe I’d regularly have to drop to my knees and feel for the ground in order to tell which way was up.
One day whilst walking with my daughter home from her school (she was six, about to turn seven) and just prior to crossing the train tracks the air suddenly turned heavy. Really heavy. I trudged, more and more bent over – and just as we reached the other side of the tracks, I collapsed. The sensation of huge hands pressed me to sit on the ground before pushing me backward at the shoulders. I remember feeling gravel under my flattened body. It was like lying on the softest cushion. The sky was perfectly blue, perfectly clear. My daughter’s voice was crowded out by the sound of my breath, as though I were breathing directly into my own ears. After a while, it felt like my chest opened up, birds flew out into that big sky… I was water, I was air… I did not need to breathe any more.
In my periphery emerged my daughter’s concerned face. Within my head, at the back right hand side near the base of my skull, I heard a voice. My voice –
“Get UP! What are you DOING?? You can’t leave her here, alone, by the TRAIN TRACKS!! It is dangerous here! Come on, get UP!!”
I eventually felt myself sit up like a marionette. In the middle distance a car had stopped in the dead end of the road by the train tracks. There were a bunch of people inside. They were hollering, gesturing.
“I’m OK” (The voice didn’t sound like mine)
“You sure don’t look ok. Hop in. We’ll take you home”
Seeing-but-not-seeing, hearing-but-not-hearing, my girl helped me get to the car and we fell into the back seat. Family. I sensed family in the car. My heart told me this was safest for my daughter. She directed the driver around the corner to our house and helped me in. I collapsed just inside the front door for an hour or two.
That was the first glimpse of what was to come. Shortly thereafter I had a dream that I was outside the house and everything spun. I fell backwards in the shared driveway after calling out to our neighbour for help. Couldn’t talk, nothing. She was standing over me on the phone to emergency services, querying whether I’d had a stroke. Within weeks I lived that scenario, awake.
No stroke. No heart attack. Doctors figured out I had developed severe dysautonomia. The automatic, usually not considered (until they screw up) functions of my body had let go of the reins, so to speak. I spent about a year flat on my back – at the end of which I recall having to train my neck muscles to hold my head up again. I was in and out of hospital many times. Dysautonomia is a cruel illness; what fixes one thing often unbalances another to the point where the ‘fix’ isn’t a fix so much as a substitution of crippling symptoms. There is no effective treatment for many with dysautonomia, and there sure as heck isn’t a cure. Prognosis is variable.
It’s coming up six years now since I was steamrollered by this illness. Soon I’ll have been this way for half of my daughter’s life. Some of the things I miss most? The weekend adventures we used to go on together – husband, daughter and me. Being able to eat more than ten individual foods and drink anything other than electrolyte solution. Going out by myself. Going out whenever I feel like it, or need to. Swimming. Holding hands and walking down the road with a loved one.
When I was ill-but-not-officially, as things became more and more difficult, I tried to turn my coping mechanisms into a bit of a game for my daughter. On the way home from school we’d have to sit or lie down multiple times. Even in winter we’d wear rain suits and lie in the grass looking up at the sky. My daughter would pick leaves out of the grass to show me. We paid detailed attention to what was around us. For a time, each day on the walk home a Tui bird would meet us at a particular kowhai tree and sing joyously – the perfect excuse for another sit down. Looking back, those were good times.
Life has well and truly shown me that I am not in control. In fact, life has shown me this in various traumatic ways since birth… and I have wasted much energy railing against the reality.
A week or two ago I wrote the following in my journal:
Big and strong
We are still subject
to the same dangers
One is delusion
The other is not
One is constant struggle
The other is not
By denying my vulnerability I deny my true nature;
I deny who I am.
I am as vulnerable as a mouse.
Not an extra smart mouse.
Not a super brave mouse.
Just an ordinary mouse.
I am finally learning to love my vulnerable self, and my vulnerable life.