Today I want to write about doing. It’s an overused phrase that we should be human beings not human doings, but nothing slams that home with a slap in the chops, quite like sudden-onset chronic illness.
Before I became ill, I was busy. I mean really busy. I worked long full-time hours as the Chief Executive of a charitable arts organisation. It was not unusual for me to work the usual 9-5 in the office, plus the evening events and Board meetings, plus attending conferences and meetings elsewhere in the country, plus working on funding applications, reports and articles for arts publications at home at the weekends. On top of that, I was also a freelance artist – I took on painting commissions and was heavily involved in the theatre having spent the best part of 20 years as a costume designer and maker. Additionally, I was a Trustee of an aerial circus organisation, attending evening Board meetings and working on papers in my spare time. Somewhere amongst all this, I fitted in a long-distance relationship and my off-grid lifestyle on a boat, which I moved every couple of weeks and that was a physically very demanding activity. I loved my life.
Then one day I developed a meningitis-like illness which left me unable to so much as walk to the kitchen from my bed. The consequences on this life that I had built were considerable. I did what a lot of people with undiagnosed (at the time) ME do – I kidded myself that I’d have to get better eventually and I kept pushing myself to work. I’d dope myself up on sugar and caffeine and painkillers and get to work by hook or by crook: I’d collapse, I’d have falls, I’d be helped to my feet by strangers in the street, I’d be baffled by why I couldn’t read properly, I’d have seizures on the train but not know that was what was happening to me. I’d fall asleep with exhaustion on the bus journey home, then get into bed still in my work clothes and sleep till the next morning, not having eaten or washed or done anything else because I was so exhausted. The next morning I’d wake up feeling drained and strangely hungover, I’d get changed, and not be able to raise a leg to mount the first step to the front door. I’d fill myself full of sugar again and stagger out the door powered by adrenalin and glucose, only to collapse again before getting to the bus stop. I’d phone in sick. And I’d try again the next day. This became a self-destructive cycle of forcing myself to try to get to work every day, all in the name of not letting people down, keeping my career and my financial security buoyant till whatever was wrong with me would pass – little did I know that each time I pushed myself beyond my vastly reduced envelope of energy, I was incrementally and possibly permanently disabling myself further.
After a few months I’d had to drop down to part-time working, during which I attended a professional development training course at the University of Leeds. This had been booked months in advance and was paid for by work, so although I had a duty to attend I was looking forward to the change of pace, learning something new and the let up from commuting. It was a week’s residential. The course was about Arts Fundraising and Leadership. I dropped in and out of the classes between seizures and migraines and all sorts of other symptoms, and despite this it was still a very rewarding course. But there was one session that really stuck with me.
The theme was around managing change in the workplace – the general gist of this one session being about redefining a charitable organisation not by what it does but why it does it. For example, my charity ran classes in music, dance and costume skills as well as producing shows featuring performers and audiences of diverse backgrounds. That’s what we did. But why did we do it? The reasons we did those things were to break down racial tensions in our home town; to engage people of different faith groups, cultures, languages, gender and age groups in order to give a voice and creative outlet to people who don’t ordinarily have a voice; and to do so in a way that’s inclusive, enabling communities to celebrate their differences and acknowledge their similarities. My classmates and I were defining our respective organisations not by what they do, but by their values.
One particular exercise during this session was called “Who are you?” We partnered up, and one person had to ask their partner “Who are you?” In response to being asked that question, I gave my name. Then they asked again. In response I gave my job title. Then they asked a third time, and I gave my age, gender and career highlights. Then again and again, and it didn’t take long before I ran out of answers. I stalled. I ummed a lot. Eventually I started defining myself not by my career but my personal life: I am a liveaboard boater. Who are you? I am a person who loves the freedom of life off grid. Who are you? I am someone who feels close to nature… before long I’d shifted from defining myself by what I do in my job, to what I do in my personal life, and eventually, when I ran out of things that I do, I moved on to my values. Who are you? I am a person who is passionate about the arts. I am a person who celebrates difference and inclusion. I am a person who is strongly principled about honesty. I am a person who values loyalty. I am a person who supports the underdog. I am person who believes in equality of opportunity. I am a person who values creative expression. When we compared notes afterwards, all of us in the group found ourselves following much the same lines of response to the interrogation. It was a brilliant way to open the eyes of people in positions of leadership, to how to define our organisations by their values more than their actions or just the number of beneficiaries we reach – it was to be a useful tool when writing our business plans, when marketing our organisations and when writing funding applications. However, for me at this time in my life with an undiagnosed and crippling health crisis – this simple little exercise became an epiphany.
I knew at this stage that whatever was wrong with me was not normal. It wasn’t just a feeling of being run down or a virus hanging on longer than it should do. I’d had this illness for five months, I was clearly deteriorating in terms of mobility, memory function, cognitive ability, balance and what I now know to be the onset of seizures. For the first time in this ambitious, career-driven, “I can be everything I want to be” life of mine, I was having a reality check: not any more I can’t! And if I can’t define myself as Artist, Chief Executive, Costume Designer, Boater, and so on – who the hell am I?
For the next three months I wrestled with this. I was desperately clinging to what tattered shreds of my old identity I still had left. It took only a couple of weeks to realise working part time was still triggering serious crashes. So I started working from home – same thing happened, and by now I was predominantly bedridden. By October my doctor signed me off work. I continued to deteriorate, got to a point where I was no longer able to feed myself every day, and I was never able to return to work.
So I started to try and fill the identity void with more doing. I’ll paint more! But I could no longer coordinate a paintbrush, even doing so from my bed was impossible. I’ll write more! But I couldn’t read properly – the stripes of words were disorientating me, and I couldn’t understand what letter came next or what words meant. I’ll work on some tidying projects and focus on my home! But I couldn’t lift a screwdriver even on my more mobile days, or sit upright for more than a few seconds without feeling dizzy and nauseas. By December 2014, I was at breaking point. I had no identity anymore, no purpose and wondered what the point of living was when there was nothing that I could do. I was no longer productive.
All this while, the mantra from the training course was echoing in the back of my mind: Who are you? After a while I realised that the reason I was beating myself up over not doing things was because like pretty much all of us, I have been conditioned to believe that a useful, valuable person is a productive person. Someone who is doing something, producing something – someone that others can pigeonhole and label with their role in society. This stems from social conditioning, much of which comes from our capitalist expectations that we fit into a machine and the machine manufactures something or makes something happen, and we get our reward for our small part in that. (Not that I have any political leanings for or against capitalism). As soon as I kicked myself up the bum and said to myself: why the heck should I punish myself for being a broken cog in the machine? I freed myself from a lot of sadness about my disabilities. The machine still goes on without me. I’ve made my mark and been the productive member of society and now it’s time to stop that. The time I spend doing nothing is to be celebrated: it’s not nothing, it’s healing, it’s recuperating, it’s recharging my heavily depleted batteries. It’s not a shameful nothing but a big, fat, celebratory Nothing with a capital N. As chronically ill and disabled people we get enough punishment from the DWP and the press without punishing ourselves as well.
As my ME and Fibromyalgia have gradually whittled down my can-do list, I have slid down the pyramid of Maslow’s Hierarchy of Need and it’s been a lumpy, bumpy ride. I’ve now landed on the bottom tier, with a bruised bum and a sense of acceptance that my priorities are now to feed myself at least once a day and to wash myself at least once a week. When you’re so ill you have to choose between eating, washing and dressing, because you can’t do them all, soon the categories towards the top of the pyramid like career ambitions, a sense of belonging, and spiritual development just aren’t important any more. That doesn’t mean I don’t long for them, but they’re things that belong to another world. To another me.
In recent months I have been able to feel useful in other ways. Firstly, I have been a volunteer for the CURE ME research project run by the London School of Hygiene and Tropical Medicine and the Royal Free Hospital. This is a project that is comparing severe ME patients with patients with MS, as well as creating a blood and genetic biobank for future international researchers into ME to draw from. I was able to volunteer for this because the research nurse travelled out to see patients in their own homes, as that’s the only way of being able to access severely ill ME patients. Secondly, I’ve started this blog to share thoughts and online information with other chronic illness patients. And thirdly, I’ve shared my knowledge of third sector funding and how it will be affected by the EU referendum here in the UK – opening the eyes of people to the negative social impact of a vote to leave the EU which has been conveniently omitted from the media propaganda. To-date that post has had over 23,000 shares on Facebook and has been taken into Twitter conversations too. I could not have felt the sense of reward that I have from any of these things without embracing plenty of doing Nothing, and being fuelled by my values instead of by doing.
So my positive thought for today is my answer to the question: who are you? I am someone who values the mental space to heal and be at peace with myself. I am someone who values silence. I am someone who doesn’t feel guilty anymore when I fall asleep in the daytime. I am someone who takes one day at a time. I am someone who appreciates solitude and the self-reflection it allows me. I am someone who does not have preconceived expectations of what I should be doing from one day to the next. I am someone who no longer uses the word “should” on myself. I am someone who genuinely values Nothing.
Who are you?
For more information about CURE-ME:
For further reading on social conditioning:
For more information on Maslow’s Hierarchy of Need:
Further reading on defining yourself by Values: