I’ve never had a 9-5 job. OK, so I’ve had shifts at places when I’ve done roughly these hours many times, but rarely has it been stipulated by The Boss. I was going to say my first job was at a supermarket checkout, but really I found ways of earning money before that: I waited on friends and family at about nine years old for Sunday dinners, did some babysitting as soon as I could, and served post-match food to hockey players on Saturdays. Then I worked at the supermarket because I was 16 so could earn ‘proper’ money. I remember always having really cold hands from handling cold food and the metal of the scanner being equally cold. I also felt I ‘needed’ a Yorkie bar in my 15 minute break just to get me through the tedium of the rest of my shift. There was something very satisfying about the chunkiness of this, along with the pleasure of eating it despite the ‘not for girls’ slogan (do they still do this???).
My first full time job was at a local council. I still remember my first day; thinking I had to get there for 9am and therefore getting to the office for 8.30am…and then the boss didn’t arrive until at least 9.30 which gave me plenty of time to up the nerves. I quickly learnt about ‘flexitime’ and ‘flexible working’, which for me meant lying in bed for an hour in the morning, tapping away at work from there, rather than battling the commute and my grumpy morning persona to get a move on.
For the next 10 years I continued to work in the city and every job I started there, I was lucky enough to love. As time went on, I also learnt the pain of dreading going into work, to staring out the window and wishing I’d made different decisions, or wondering if I could just quit and not work for a few months. I watched people walking past, saw pictures drawn in the snow as I looked down from the high-rise building I was in and generally daydreamed about what else was ‘out there’. Sound familiar?
For me, – and like my partner Tom – health issues battered us into crisis point with our work. Tom went full-pelt, full time at his own business before ‘the end’ whereas I gradually lost my head from above water. I had gone from episodic migraine (defined as fewer than 15 days a month of ill health but really who can still work full time when you’re ill for 12??) to chronic and so I went from 40, to 20, to 16 hours a week of work. In those days, working flexibly had been a saviour and my worst enemy. Looking back from my current position of working up to five hours a month, I can see that being able to work at any time meant I could catch up on work I missed, but also meant I could think about it at any time of day or night, which was a massive drain on my energes.
I couldn’t have afforded to stay living in my house and working less (more on finances in a future blog), but moving onto Tom’s narrowboat and renting my little house out was just about doable. He had made it work those three years ago, and our similar stories gave me confidence that it would be a good option to at least try.
Even if I somehow miraculously stopped having migraine, I would never choose to work full time again. What I value most about being ill is what it’s taught me about what I want from life. In the past my ego wanted lists of achievements, of ventures ticked off, of promotions and to some extent, higher pay. I wanted to connect, to help, to be recommended, to link up the pieces of the puzzle and see the results. I’ve got to do a few pretty cool things in my work, including getting about 100 medical folk to sit to stand on cue, to talk to people high up in the health system about why stories matter, and had about 70 people singing (without the permission and risk assessment the Council said we needed…) right in front of the Council House itself.
I now flicker between wondering – hoping – if i’ll get to do some of those things again, and fully accepting that I never will. I’ve recently been inspired by Sheryl Chan from A Chronic Voice to think of not what I want from life, but what it wants from me. Does Life want me to do these things again? It’s a question I’ll keep asking.
My future I spied a butterfly
Into the cocoon to wait, not die
And emerge reborn, not sad or ill
When wide-eyed hope has had its fill
Not so me, but that and thee
Will flicker about, steadfastly