Strange looks, uncomfortable journeys and people who simply will not leave you alone? Sound familiar? Find out how Cora manages public transport and MS.
Every summer I head to a London University to conduct doctoral vivas. Essentially people wanting to become doctors in Educational Psychology don full plate, pick up a rapier, and defend their thesis against a full assault from two doctors armed with halberds and the occasional broadsword.
After my last major relapse I was, let’s say reluctant, to move to the wheelchair I now call home, and last year I was barely managing to stay on my feet with a combination of canes, crutches, and sheer stubbornness. I carried my crutches on my back in a sword case while I used my cane and switched between them when things got shaky, though if I’m honest things were routinely shaky.
After the vivas I boarded a homebound train with a friend who was acting as my carer for the few days we were in London. I had to go to the toilet as soon as we boarded because my bladder, it turns out, is enthusiastic about urination, a huge fan, and just can’t get enough of it.
When I finally got myself out of the toilet, I lost my friend on the busy train and I was alone, over encumbered with my sword case on my back, and with plenty of people standing in the corridors. My friend, I later discovered, had characteristically found a seat and reserved one next to him for me, but I could not find him.
Without being able to locate a chair I instead scouted a space on the floor to sit my quickly deflating backside and I parked myself down. I didn’t have to get up for well over an hour and while the floor wasn’t exactly comfortable, I had time to rest before I needed to stand again.
There are always onlookers. There are sometimes commenters, folk who feel compelled to tell you about how they see your life, always exclusively as either tragedy or inspiration, and less commonly to offer prayer.
It is not a good feeling.
But rarely there’s a hero. I love heroes. A hero once carried me up a flight of stairs in my chair at a Japanese tea garden in California; never mind that I didn’t need carrying up the stairs, I can walk, but you can’t convince a hero not to save you.
That’s the thing with heroes, while they are, well, heroic, they also in my experience tend to play it fast and loose with the issue of consent.
My would-be hero was a kindly woman who saw me sitting on the ground with my crutches and felt compelled to intervene. I immediately clocked her interest and did my best to blend into the obscure pattern of the stained train carpet. She found me anyway.
‘Shall I see if I can find you a seat..?’
Of course the problem here is the implicit assumption that I’m incapable of finding myself a seat, as though the option to simply head out and ask some folks to kindly move was well beyond my clearly limited capabilities, never mind that I had conducted a doctoral examination merely hours before.
I wanted to say, ‘No, please don’t, please for the love of all that is good in this world do not draw attention to me, I stand out enough and I just want to sit here with my headphones on and do my best to disappear into the darkening void between them.’
But I was more reserved when I responded, ‘No thanks, I’m fine’. The kindly woman looked at me, her face shifting familiar expressions from one full of pity to one full of resolve and I pleaded with her with my eyes. It was no use.
The woman looked at me, shook her head, and said, ‘I’m sorry’. It wasn’t the sombre apology of someone resigned to the situation I was in, but the defiant apology of someone who had decided to act regardless of my protest.
My hero strode into the train carriage and called as loud as she could: ‘Can someone please give up their seat, I have a disabled woman here!?’ with all the desperate emphasis of Gondor calling for aid.
Silence.
It did not acquiesce. They say that placing a hand upon a burning stove makes seconds pass like hours.
Well, the silence lasted for an epoch. Civilisations rose and fell while I sat there trying in vain to implode.
Finally a young man stood up… ‘I will give up my seat!’. King Theoden answered the call.
I hauled myself off the floor and into the carriage. It’s honestly all the onlookers could do not to applaud. I thanked this young man profusely for his kindness and I clutched at what pride I had remaining and resisted the pressure to swoon.
I dragged myself to the empty seat and wished now only to sit down quietly and gracefully …
Well, instead I crashed into the seat like a rocket ship, with rapid unscheduled disassembly.
After this adventure I made the decision to buy myself a wheelchair. It is cheap, falling apart almost, and to anyone who knows anything about wheelchairs it is surprising, almost miraculous, that this vehicle at all gets me to my destination.
I call her Firefly.
A year passes.
I sit outside the London University, two new viva examinations complete, and ready myself for my journey. I’ve planned out my trip home with accessible stations selected, level access ensured, and with me having spent the last year working out to be able to move long distances in a wheelchair.
I think about how far I’ve come, from unable to move more than a few feet in my chair to now becoming a confident wheelchair user, wheeling off-road, down steps, and with the strength enough to be free to look in a direction, to want to go in that direction, and to be able to.
Little did I know that this journey would feature Google’s headquarters, a Greek restaurant, three broken elevators, wheeling down my first escalator, and rolling around the dark streets of Winchester at night. But that’s a story for another time.
Outside the London University I pull on my headphones, I look to home, and smiling I push myself out onto the London streets …
