Two of my colleagues at Scottish Govt, Fiona Munro and Andrew Slorance, have been sharing their experiences of cancer online. Their stories are astonishing, challenging and moving. For anyone going through a similar experience, or providing care (paid or unpaid) to someone in their positions, their blogs are a treasure trove of insight into what it is to live with cancer. I have followed both their stories with a feeling of awe at their courage and sympathy for their respective journeys.
Living with cancer is of course a very different experience from that of living with multiple sclerosis (MS). I often find their blogs to be accounts of experiences that are very remote from my own health challenges, and muse on how lucky I am to have a condition that is more insidious than invasive, more volatile than violent, more grindingly dull than shocking. But they both recently blogged about the challenge of ‘looking well’ and I suddenly found myself relating deeply to their thoughts and experiences. And reminded of conversations other things I have written on this blog has prompted with others who live with chronic progressive diseases.
Like most people diagnosed with MS it was a few years before my disease produced permanent and then steadily worsening disability. In those early days few would have known from casual encounter that there was anything ‘wrong’ with me. These days crutches and a left leg that drags are the primary visible signs. Pretty much everything else is invisible, at least unless you know me well and can spot the signs.
Both Fi and Andrew talk about the misconception that ‘looking good’ can promote, especially as they use social media to share their experiences good and bad. As they both note, behind the looking good moment is an invisible tale of all that went in to getting to that point, and the price that is paid afterwards. For those of us who have lived for years with a chronic condition the anxiety about public perception is an all too familiar quandary. I remember talking to a work colleague, trying to explain that my leaving a workshop early had been because I was having a flare up and controlling my ‘cognitive fog’ and spasms and pain was exhausting me. Their comment has stayed with me – ‘I never think of you as disabled’.
‘I never think of you as disabled’ – there is so much to say about that. Starting with – neither do I! I refer to myself as such when I feel it’s important but I don’t believe myself to be disabled. In my head, my dreams, I am not. I lived 30 years without MS, my identity was formed long before MS took me. For a long time I moved between periods of feeling very definitely ill and ok, to ill and disabled then not ill but a bit disabled, to more or less ill and disabled all the time. And it will change again, though like everyone with MS I have no idea when or how, I just wait for that to play out and try to keep that part of the game at bay as long as possible. I work hard at not looking disabled, yet am surprised when people say they don’t think of me as such. Such are the contradictions of a life with MS.
The ‘ill and disabled’ mean I now spend as much time working out how to be those and a worker, a partner, a baker, a gardener, a mother, a friend, as I do anything else. Radical self-management is the name of the game. Life is a constant series of compromises and medications and adjustments and disappointments to self or others. I can have the energy for x or y but not both. I can do a but that will mean a day in bed after to recover. Everything is so finely tuned that a small unanticipated change can upend my day. I get a bus from work to the train station because the walk from work to bus and bus to station is short and I can manage it most days if I have paced myself. On the other days I get a taxi or on occasion get to the train station stop and walk instead into the hotel near by to crash the night as I just can’t make it the hour and half it takes to get home. But the other day the bus was diverted and I ended up what for most would be a 5 minute walk away from the stop I should have been at. It was the end of the day. It was hot (we MSers don’t get on with heat), it was the Edinburgh Festival and the streets were packed and noisy and my brain started to get overwhelmed by all the stimuli. It took me nearly 25 minutes to get there, including several points where I just wanted to lie down and cry in the middle of the street (being festival time I’d probably have got away with it, maybe even earned some money as a busker…).
People sometimes talk about the fatigue that is both a part of and a by-product of MS as like an egg timer, you have so much energy for the day and then it’s gone. I tend to think of it more like a smart phone battery. You have to think about what apps you will be using when and whether you will have enough to get through the day. If it’s tight you think about how to save some power here and there (switch off Bluetooth, dim the screen) or when you might be able to recharge. And every now and again some app drains your battery unexpectedly and you are stuck in the middle of the street without a smartphone when you need it (yes I’m looking at you Pokemon Go!).
I am incredibly lucky – the kind of work I do and a very supportive employer (Scottish Government Digital) and boss (thanks Colin Cook) means I can plan a lot of my day myself. I can build in small gaps here and there to recharge. Lots of short walks are ok as long as there are a few minutes between, similarly very intense discussions are ok if there is a little quiet time after. I can work at home when I can and though I have a long commute I can afford to pay to go 1st class so I can be guaranteed a seat, a bit more space for spastic legs, and quiet to work so I make best use of the time, saving other time for rest and recuperation. I’m pretty bloody good at all this and it helps that most people I work with regularly know I have MS and will walk at my pace, insist we take the lift, or remind me to look after myself if I’ve been a bit visibly worse. And yet…. I don’t want to be thought of as disabled. I am conflicted about how people see me as a colleague in the same way as I feel conflicted about using two crutches (the sensible energy protecting and safe thing to do) versus one, and even more conflicted on the days when I hear the wheelchair calling. I know I could do so many things both with my family and at work I currently can’t because the effort of walking with crutches makes it impossible. But wheelchairs are for paralysed people aren’t they? What would people think if I was in a wheelchair and then stood up and walked with crutches…? What would I think, sitting there? Such are the complex emotions of life with MS.
All that has taught me to be gentle on myself. Yes I could play a much more active role in family days out, ironically, if I would use a chair or a scooter. But I am not ready for that and that’s ok, I don’t have to be perfect, getting through the day is tough enough. Besides, having a mum who can’t cook dinner often is pretty good when other mum is away and you are a teenage boy who loves takeout. And it’s taught me to be grateful that I am able to flex my job around my condition somewhat as that keeps me at work, and being at work helps me maintain some sort of sense of myself as a person not a disability, or an illness. It’s taught be accepting that even with all my experience, self-management strategies, and luck, I will still regularly feel caught between wanting the world to know and accommodate my disability and wanting this all to just be a dream I will wake up from and once again be able to go about my day without thinking about whether I’ll run out of power at an inopportune moment. But increasingly it’s also made me angry. I know I am lucky that self-image is my biggest worry at work – for so many disabled or ill people work is either impossible or impossibly difficult because they don’t have the kind of supportive workplace, boss and teammates I do. Which is a tragedy for them and a stupid and costly waste for society.
I don’t imagine I’ll ever get the balance between wanting to look well and wanting the world to accommodate my needs right. Not least because MS is the disease that keeps on giving. But I hope that as a society we can get our heads round enabling everyone with an illness or disability who wants to be able to stay in work to do so. After all, how many of us will never be in the position Fi, Andrew or me are in? As retirement ages rise and more and more people survive things like cancer huge numbers of us will end up having to manage illness (and its aftermath) and disability while working. Which means huge numbers of employers will have to figure out how to help them. Creating workplaces and processes that don’t care if you are disabled or not will become as important as figuring out how to build digital services that accommodate everyone’s needs. Now that’s a future I don’t mind thinking about!