Skip to content

‘I never think of you as disabled…’ – Working with MS

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!

Living presently: the best laid plans are not the point.

But Mousie, thou art no thy-lane,
In proving foresight may be vain:
The best laid schemes o’ Mice an’ Men
Gang aft agley,
An’ lea’e us nought but grief an’ pain,
For promis’d joy!

Still, thou art blest, compar’d wi’ me!
The present only toucheth thee:
But Och! I backward cast my e’e,
On prospects drear!
An’ forward tho’ I canna see,
I guess an’ fear!

– Robert Burns, To a Mouse

It’s not the kind of thing most of us want to hear – that our illnesses bring gifts with their trials and tribulations. But it’s none the less true for all that. A much looked forward to week off, full of plans, is upended, my best laid schemes did indeed gang agley.

In retrospect I could have anticipated this; July and August have a long history of challenge for me, and a holiday is always a trigger. What has been ignored or saved up suddenly finding its release valve. It’s when I first noticed the early symptoms of MS. When the optic neuritis that would herald the start of this phase of life was diagnosed and when most of my biggest relapses have flared. So instead of schemes unfolding I have been in bed once again, an infection causing symptoms to flare and overwhelming fatigue to kick in. Truth be told I’d noticed it creeping in a few days earlier but playing at the edge of the cliff is a hobby I have had since childhood.

At this cliff edge though I struggle – knowing I should rearrange plans, unable to take the decision to do so, hoping that in wilful ignorance I might find bliss. Dancing with fate increasingly furiously, I hope that I can stay on the right side of the edge. But as I start to slip over I know it’s time to concentrate on landing well. In the past I’d have danced all the way down but I’m much better at this now. When it becomes irrefutable that I’ve flared again I quickly accept it’s time to stop. Attend to what it is wrong now. Banish worries about what has changed or what this might mean about the future. Concentrate on the present.

You see the real point of To a Mouse is not its best known soundbite, that plans often go wrong, but that the mouse copes with these so much better than Burns precisely because it has no sense of past or future. It lives only in the present. It’s not the schemes going awry that cause us pain and grief – it’s the thought of what might have been, the pain of remembering what has been lost, and the fear of what might yet happen.

Multiple Sclerosis – the disease of many scars on the brain – might also be the disease of existential angst. It traps us, if we let it, between all that we have lost and all that we might still lose. It keeps us permanently teetering on the edge of the cliff. Like a cat playing with a mouse it taunts us with the prospect of relapses and losses that may or may not hit at any time. There can be no future plans without accepting that they may well gang aft agley. No coping without accepting that life in the present is what matters when MS dances you over the edge. Listening to the body, to the mood, to feelings. Accepting the stillness and quietness of these times. Will it be hours, days, weeks before the fatigue lifts, the muscles begin to work more normally again? That doesn’t matter. Thinking about that will not help, twenty plus years with MS has taught me that.

What has been has been, what will be will be. What is, is what must be dealt with. The recovery plan is put into action: call off engagements, warn the family, make sure pills and books and crosswords are by the bed. Fire up the radio. Most importantly – the baby steps journal is brought out. Experience has taught me how important it is to focus on recognising and revelling in the small triumphs – ‘got up and showered’, ‘spent time in the garden’, ‘brushed teeth’ in the early stages moving on to ‘got dressed’, ‘played with the dog’, ‘wrote a letter’ as things improve. Over  the years those patterns have proved the only certainty in the land of radical uncertainty that is MS. Each day will have some small triumph, and as the entries increase the return to something more ‘normal’ emerges. This time the cliff was not too high: the dance lasted days and not weeks or months, the landing was soft and my baby steps journal is daily full already of the small present moments that are the real stuff of life. This has been a good fall, a smooth recovery.

Over the years MS has taught me that whilst past and future consume so much of our energies, so dominate our thinking, it’s in the present that life is found. In the daily round of moving, talking, watching, listening, tasting, smelling, feeling. From those moment by moment building blocks life is built – interactions made, plans enacted, feelings founded, thoughts explored. Life is made in the absorbing of what the world puts in our midst, not in the regretting of what it doesn’t or the anticipation of what it might.  When I am at the bottom of the cliff the way back up will be so much harder if I spend time on those enemies of living presently.

But of course, like Burns, I can’t escape the siren call of past and future thinking for ever. Already they are creeping back in. But my baby steps journal is there as a constant reminder that the solution to plans going awry lies in radical attention to the now, something MS (amongst others things) has helped me become much better at. After all, lessons in living presently are an appropriate gift from something that steals one’s past and future. That plans will go awry is just a given, no matter who you are. But when they do, Burns’ mouse has much to teach us about how to cope.

 

 

Friends Of The Journey

“Love recognizes no barriers. It jumps hurdles, leaps fences, penetrates walls to arrive at its destination full of hope.” — Maya Angelou

Towanda's Window

Fangirling Is Resistance

Lou's Story

Our journey with cancer

Vanessa's War

The wartime memoirs of Lady Vanessa Montague

Equality by lot

The blog of the Kleroterians

Citizen Participation Network

Connecting Research, Policy and Practice on Participatory Democracy

The Eyes Have It

an appreciation

drkategranger

In memory of an inspiring young doctor who mused about life & death through her terminal cancer illness. Her husband, Chris now keeps the page updated.

Critical Dispatches

Follow me on Twitter and Instagram @RichyDispatch

opera, innit?

a good Tito/mezzo guide

atrophiedmind

140 characters aren't enough for this stuff...

Bullet Proof Cardie

A doctor in recovery writes...........

Leisurely Seeking Doctorate

A fifty-something American explores doing a PhD in the UK — and then turns 60 and does it

@katetowsey

Stuff about user research and delivery, and stuff

Swimming in Stormy Weather

Fieldnotes from the World of MS, White Shirts & Opera

Content At Large

Notes from the front: Content strategy, development and dissemination ideas from champions and leaders in the field

NeuroBollocks

Debunking pseudo-neuroscience so you don't have to

What I did on my holidays

A week in Ireland. Alone

%d bloggers like this: