In my last post I wrote about a disturbing incident that happened to me yesterday when, as part of current management practice, HandyDART substituted a Yellow Cab for my ride.
In reality it probably won’t be yesterday for me for some time. Once the switch is flipped the sun rises on one very long day. Dreamland isn’t high on the list of hyper-vigilance happy places.
So as long as I am awake – and by that I mean NASCAR pit crew level alert – I thought I would try to write – even though my body would prefer a punching bag to a keyboard.
I want to explain why we need HandyDART drivers and the important role they play.
There are a lot of unsung heroes these days. I suppose there always were.
But at a time when words like decent and hard working have been ruinously redefined by those who know little of either and superficiality is the new substance, the only way I can explain why HandyDART drivers matter is to talk about what they did for me.
First, let me introduce you to me as I was when they first pulled up.
I became ill at a very inopportune moment. New city – new career. My savings spent –family crisis- and as a result I was living from paycheck to paycheck.
At the time this didn’t concern me because I was young – and who gets sick-sick when they are young?
When your body changes, your life changes.
My boyfriend of nearly a seven years left – actually more like evaporated – magician disappearing trick departure.
The nurses at the hospital said it is something they see often.
“When the men are ill, the women stay. When the women are ill, the men leave,” they told me.
If I am honest – and I try to be – his leaving was a good thing. Ending the relationship was right. How he did it was wrong.
Most of my friends were people I worked with, so when I stopped working they stopped being friends. My other friends – the ones that were now far away – did their best to be long-distance support. Long talks on the phone are invaluable but if there is ever a time when you require ‘boots on the ground’ – it’s when you are sick.
What complicated things more was that my illness is rare – there are no ribbons or ice buckets with the name of my disease on them – and thus there are no support groups or resources to draw from.
Having a rare disease also meant it took three years to diagnose. In that time my condition deteriorated rather dramatically. Alongside it, my finances, etc.
Without a name for my illness, people – including some doctors – wondered aloud or to themselves if I wasn’t just making this all up.
In one instance a doctor became so convinced of this he actually ordered two physiotherapists to take me to the ‘gym’ and push me out of the wheelchair to force me to stand.
That was a really bad day – for both of us.
There were lots of bad days. Nausea so bad that the slightest nod of my head was enough for a geyser of stomach acids to spray forth. Pain. Unrelenting, ‘is-there-an-inch-anywhere-that-doesn’t-hurt’ pain. Body parts transforming into temperamental divas shrieking over their similarly restless understudies. Bodily functions that should be autonomic stop being so and ones that should be wired to work on command – don’t.
But the hurt from what was happening inside was nothing compared to the stuff going on outside.
People were the worst moments of my day. Their pity. Their awkwardness. Their abandonment. Their outright hostility. Their advice. Their truisms. Their fallacies. Their celebrity-endorsed cures. Their need to deny their own mortality and vulnerability and therefore me.
The pain my body produced, my brain coped with.
The pain people inflicted, my heart could not.
My life before was not easy so my illness and definitely not my disability, don’t even make it into the top three list of most challenging things I’ve ever faced.
But it may top the loneliest.
I was buried under a barrage of nonsense and ‘this is just like’ tales that really weren’t anything like it at all.
Daily affirmations, favourite lifehacks, quote memes, the reductionist wisdom of cats – all things that genuinely challenge my commitment to defending free speech – were thrown my way.
I just wanted someone to be normal.
Someone to not be uncomfortable or ‘caring’ or ‘concerned’ – I swear earnestness belongs as a cause of death on some coroner reports.
Someone to not look at me like I was ‘special’ or ‘amazing’ or ‘inspirational’ or worst of all – ‘angelic.’ (Salt on a wound.)
Someone to not act like I am an object instead of a person and push my chair – with me in it – out of the way of whatever it is they think I am in the way of without speaking to me first.
Enter the HandyDART driver.
They make jokes – or don’t.
They ask how you are feeling – or don’t.
They tell you about their day – or don’t.
Whatever they do or don’t do – they are doing or not doing exactly the same thing with you as they would with someone not in a wheelchair.
It’s like respite from the able-bodied – their ignorance, their misplaced pity and most of all the way every single piece of the world they built is constructed with assumptions about what they think is normal.
Some days I just want to scream at people – “Did you ever think you might be the one that needs fixing?”
My rides were moments where I didn’t have to explain or expand or prove or deal with any of ‘your’ (you in the global sense) crap. I could just be. Quiet. Talkative. Sad. Happy.
With remarkable accuracy the drivers read and respected my mood.
This happens, in part, I assume because the job is self-selective. You don’t apply unless you aren’t creeped out by someone who is ill or ‘different.’ And in part, because of exposure – which is one of the *many reasons I am committed to using public transit as much as possible.
But that’s me.
I can do that – or at least I could and hope to be able to again soon when I can sit facing backwards on a moving bus and not have my lunch land on my lap.
That’s me now – it wasn’t me then.
When I first left hospital – after a 13 month run, which followed a few two-month runs – I was depressed, worn out and beaten down. Going to doctor’s appointments and for tests and procedures would leave me more so.
I remember leaving VGH with more teeth pulled than left in my head– a complicated consequence of various things including some medications and medical errors. There is a considerable lag time between loss and replacement of teeth and I was planning to spend it in a cave. The HandyDART driver saw my hand over my mouth, the tears in my eyes and pretended not to notice.
Once behind the wheel he said, ‘ You like hockey?’
‘Yeah’ I answered.
‘Just tell people you’ve got a Bobby Clarke smile.’
I laughed and put my hand down.
‘Women’s wheelchair hockey star?’ I suggested.
‘Exactly!’ he said.
‘I can sell it’ I said.
‘Knew you could’ he answered.
See here’s the thing – HandyDART drivers are sort of home care on wheels.
Me – I’m not so big on ‘help’ and less so on ‘helpers.’ I don’t like messages that tell me to hug myself or mugs that say I’m beautiful.
I am not an easy person to support.
Maybe I will write about that part of me later on in this long day.
But HandyDART drivers are like expert interrogators. They get you when you aren’t paying attention. They ease on in and before you know you it – for a moment, a very special moment – you aren’t alone. You aren’t a stereotype or a spectacle. You are just someone to talk old school with.
Taxi drivers ask ‘how did this happen to you?
HandyDART drivers ask ‘You seen that movie with…?’
It’s not that I’ve never discussed my condition with a driver, on occasion I have. But a) I bring it up and b) it is about as interesting and novel to them as it is to me – which is to say – I am kind of bored of the subject and there are so many more interesting things in the world that I would rather talk about.
Of course not all drivers are wonderful. I have had one bad experience and one unpleasant one. I began using service about 7 years ago so I think that’s a pretty good run.
Also, most of the other drivers decimate the bell curve- they aren’t just satisfactory – they are honour role.
I prefer not to use HandyDART because I prefer to use the same services as everyone else whenever possible.
But man, am I ever glad I have the choice.
* Other reasons include that I am aware of the extra costs services like HandyDART incur and try to treat public money as I would my own – which really, it is.
** This is a rough approximation of the conversation. I didn’t take notes.