I didn’t know anger before I was diagnosed. I had never lost my temper. I’d never, in fury, short circuited and lacerated others with words completely unmeditated. I had more tolerance for the little things and the big things, in my immediate world at least, were ok. Political and global issues rankled of course and I supported work to end injustice, but utter personal outrage was not a place I had been to.
The anger took some time to arrive. I was expecting it, as one of the stages you are supposed to pass through in ‘grieving’ about your diagnosis. Yet it still caught me unawares when it did show up.
At first it was frustration when little things weren’t quite right and I didn’t have the energy or eyesight to fix them. It felt quite literally that things ‘got on my nerves’ more. Then as a busier London life resumed anger manifested itself in my dealings with internet, telecommunications and travel companies when service fell short. I penned detailed letters of complaint, from ‘(very) angry of East London’. As I saw it human kind hadn’t discovered too much about MS, but we have worked out, in the main, how to deliver decent customer service. So why weren’t people getting it right? I transferred my anger at the ‘injustice’ of being stuck with a disease which science wasn’t able to effectively treat, onto the insignificant things that I knew could be fixed with a bit of tenacious complaint. Instead of shaking my fist at the Gods I shook it at the more earthly customer service assistants of Vodafone.
Then things developed. After a few months and some time with an NHS chronic health psychologist (highly recommended) I began to see that being understood was important to me: I needed people to understand I had MS. This explains my desire to broadcast the news from the rooftops, or at least the national media, but also my rising anger in situations where it went unknown.
On public transport, and especially London public transport where communication with fellow passengers is utterly taboo, I began to struggle. Travelling on buses with a fatigued left leg and compromised balance, I often needed a seat, but was too cowardly to ask without a legitimising stick. So as I clung onto a pole as the bus swerved its way around the streets of the East End, I would incinerate inside; angry at the situation and myself for lacking the assertiveness to deal with it.
My worse flare up was whilst travelling on a train during a relapse in the summer of 2010. Fatigued and experiencing muscle weakness in my left side for the first time, on the empty train I’d got on I stowed my suitcase next to me, unable to lift it to the rails above. Nearing the capital the carriage began filling up. Someone asked if I would be able to move the suitcase so they could sit down. I asked if they would be able to put it up on the rails for me. They declined and an older lady listening-in from a seat ahead turned and judgementally said I should stow it under some seats down the aisle. That was what she’d done, and of course she was an older lady, not a young healthy girl like myself. I could feel the tide of public opinion in the carriage stirring against me. I said nothing, but ached with anger inside. I limped down the aisle rather pathetically hauling my suitcase with obvious difficulty into the appropriate spot. I hoped people would now be able to understand my position, that it was difficult for me to move myself and my suitcase. Something of course I could’ve and should’ve communicated first.
But the rush of passive aggression continued and once again in my seat I proceeded to hammer home my disability by booking a taxi over the phone to take me from the station to my hospital (which has a suitably serious sounding name). The woman next to me was now too embarrassed to look in my direction, the older lady in front kept very quiet and when the train reached London a couple hung back and offered to carry my suitcase off the train. I gratefully accepted, but realised I’d likely overdone the drama. Definitely not my finest hour.
Looking back at this incident I can see clearly I had the ‘why me’ anger I disowned last year. I didn’t want to deny my MS and pretend everything was alright; I wanted others to engage with the shock of it as well. Why me out of all the people on the train, did I look young but move with difficulty. I wanted others to be as horrified as I was at this upending of fortune. I was not interested in pretending I was fine. I wasn’t and as my writing suggests I wanted more people to understand what it felt like. Unfortunately sometimes my anger meant I went about this in an unconstructive way.
It’s taken me about eighteen months and umpteen attempts to write out and understand these episodes of rage. The move to the sea, away from the millions of Londoners who ‘don’t understand my MS’, has unsurprisingly made me a lot more serene, as well as the happy incidents recorded in my last post. Gradually I am able even to relish being perceived as a normal healthy 30 something as well as on occasion being assertive enough to explain why I might need some assistance. I still have a long way to go with this and as different symptoms occur it is likely to kick off the anger all over again. Next time let’s hope I can give my fellow passengers an easier ride.
Copyright (c) Cathy John 2012. All rights reserved