Wednesday, 28 October 2015

Forty four – Entrepreneurs with Chronic Illness

Romeo’s gluten free bakery was in Islington. The thing is, I love gluten; it’s one of my favourite food groups. I didn’t want to go to a gluten free bakery. A cake without gluten is like air without oxygen: suffocatingly pointless. Plus, I didn’t really want to go to Islington.

My phone told me to catch a bus from Holborn. It also told me that half an hour later I would be deposited, pretty much, outside the bakery. My phone had become an invaluable Meetup tool. Over the weeks, it had become my guide and companion: it always knew where to go. I, on the other hand, was often confused and lost, relying on familiar trails and memories of earlier Meetups.

The event had a subtitle of ‘share stories, create goals and get practical tips’. It was a group for people who called themselves ‘spoonies’; people who have chronic conditions. I had heard the term before; I have a friend who calls herself a spoonie.  The term comes from writer and blogger Christine Miserandino who runs a website called ‘but you don’t look sick’.

The metaphor is a simple and compelling one. If you’re fit and active, you might be given loads of ‘spoons’ in the morning. Spoons, as I understand it, represent energy. If you have a chronic condition, you might be only given a limited number of spoons; day to day activities use up your ‘spoons’. Some days you might wake up having lots of spoons, whereas on other days, you might only have a few.

The Meetup sounded like an interesting idea, and I was intrigued by what discussions might take place. I read that some spoonies need flexibility, but employers need you to be at your desk; you really can’t say to a prospective employer, ‘I don’t know how well I’ll be tomorrow’. An implicit theme behind the Meetup was the question about how technology might be able to help.

I stepped into Romeo’s café. It was empty except for three people; one solitary person at the back, and two people sitting at a table by a wall. The instructions were to look out for people ‘at the side’. I had found them.

The spooniepreneurs, as they called themselves, were a pair of North American women called Sally and Hayley, both in their early twenties. I introduced myself, thanked them for having me along and quickly disclosed that I didn’t have any medical conditions and that I wasn’t an entrepreneur. Despite my profound gastronomic reservations about the palatability of gluten free cake, I accepted Sally’s recommendation and ordered a slice of carrot cake.

‘How many of these events have you run?’ I asked.

‘This is the second. There were hardly any people on the first one. Although people joined, I think the problem is, you know, people find it difficult to come along; that’s how things are. We’re thinking of moving it online, to webcasts, you know? That way more people might be able to participate.’ I could see the issue: it’s going to be tough for people with chronic conditions to get to a face to face event.

Hayley worked as a part time copywriter and yoga teacher. Sally, on the other hand, was new to the country. She had traveled from America via Canada and Switzerland, and was trying to find work, having previously worked in ‘university administration’.

‘Hello! Is this the Meetup?’ A young man called Mike arrived at the table. Mike was a Meetup rookie. He had discovered it a week earlier and this was his third event.

‘What kind of things have you been to?’ asked Hayley.

‘I’ve just come from a business networking event. They spoke about how to do networking, like, how to go up to people and stuff. It was very interesting. I enjoyed it. Before then I went to a yoga event around London Bridge. That was very interesting. We all sat down and meditated. It felt good, like, my mind was totally empty? It was a good feeling’.

I told them about the yoga event that I had been to, sharing what I knew about candles, foot soaks and seven different chakras.

‘That’s not the kind of yoga that I do. Is that kundalini yoga?’ asked Hayley, interested.

‘Yes! It is! That’s what it was!’

‘They didn’t talk about any of that in the group I went to’ said Mike. Although I wasn’t learning about business or chronic conditions, I was learning about different types of yoga.

It turned out that Mike was twenty one and had dropped out of university after choosing the wrong course. After three years of bar work that he hated, he was trying to figure out what he wanted to do. He was keen to share his philosophy of life with us: he wanted his life to be all about helping people. Hayley and Sally nodded. Mike was a charmer. He had a gentle confidence that I admired.

After three quarters of an hour, the conversations gradually came to a halt. We had talked about the Linux computer operating system, Geneva, African words, motorbikes, my one hundred Meetup quest, carrot cake, mindfulness meditation and improvisation acting classes. Hayley went to pay a cake bill, and I shook Mike’s hand. It had been fun.

It was still early. I turned my attention to my phone. I looked at the time, and then started to look at the next ‘time chunk’ in the future.

‘What are you going to next?’ asked Sally.

I showed Sally my phone.

‘Oh! Good luck with that one!’ she laughed.

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