I thought of happiness, how it is wovenOut of the silence in the empty house each dayAnd how it is not sudden and it is not givenBut is creation itself like the growth of a tree.No one has seen it happen, but inside the barkAnother circle is growing in the expanding ring.No one has heard the root go deeper in the dark,But the tree is lifted by this inward workAnd its plumes shine, and its leaves are glittering.[…]For what is happiness but growth in peace,The timeless sense of time when furnitureHas stood a life’s span in a single place,And as the air moves, so the old dreams stirThe shining leaves of present happiness?No one has heard thought or listened to a mind,But where people have lived in inwardnessThe air is charged with blessing and does bless;Windows look out on mountains and the walls are kind.– May Sarton, The Work of Happiness
One in fifty. I used to think of myself as a ‘one in twenty’. As a kid it was the oft quoted figure for the percentage of people reckoned to be gay. Such things seem a little less useful in the era of fluid sexuality. But the one in fifty is more up to date. One in fifty people diagnosed with multiple sclerosis will still be working 25-30 years after diagnosis according to research by the MS Register. In a few years, with luck, I’ll be one in a hundred. The figures are so stark they stopped me in my tracks.
I know of course that I am lucky in more ways than one. My disease course has been kind to me where it has been vicious to many others. My work and employers positively minded to make managing MS and work more feasible than it is for too many. For most of my working life with MS I have had work that asks more of my mind than my body, employment that has offered the flexibility to work with and around the highs and lows of MS, employers who have had positive views on disability and illness.
One. In fifty.
When I was diagnosed I was much more concerned with the odds of me still being alive at this stage than I was with the odds of me still working. But as shock and fear and uncertainty settled over the years into the tedious slog of life with a chronic and progressive illness, anxiety about work loomed ever larger. To manage fatigue, spasticity, brain fog, foot drop, pain and all the other nips at the heels of comfort and ease and ability is a full- time job. Many times the challenge of that and a job in the more conventional sense has seemed impossible and I’ve teetered on the edge, slipped a little over it too. But somewhere deep inside I have known that the inward work of work itself is (truly) vital, is part of what lifts me up.
It’s not in the silence of the empty house but in the clatter of the working day that happiness grows inside me. For those hours the emptiness of multiple sclerosis, the void it pulls you toward, is drowned out. I have purpose, distraction, the comforts of collective endeavour. At a basic level, as I have often found in my worst moments, I have the simple power of ‘a reason to get out of bed’. A reason to unfold and stretch out a body full of the spasticity and pain that has settled over it through the night. To take the small awkward steps that through the day (at least till energies and medications wear off) will build in confidence and speed.
In the rhythms and energies, triumphs and disasters, joys and frustrations, of work a peace grows. I have learnt to aggressively manage my energy and time. I work four days so that on the fifth I can rest and sleep, and on the sixth and seventh gently recharge. One might think that it is in the quiet of home, body freed from the demands its failing abilities struggle to meet, that I would be happiest. But in those times the ghosts gather – remembrances of a future lost, sad sighs for roads denied. There is no peace in those times. I need work. Not always paid employment. But work.
It’s the world of work and purpose and others that gifts a sense of time spent well, of life lived well, of limitations stretched out as far as they can go. Having finally found myself able to balance all this, manage all this, in a place that is stimulating and challenging, I am happier than that terrified woman standing in the rain the day she was diagnosed could ever have imagined.
I dread the loss of this. I never look ahead for fear of that. I weep for those for whom employers and work will not flex and accommodate. Those other forty-nine, were their conditions really so bad that work was impossible? We can turn to statistics on disability to progression to see that could not be the case for all, perhaps even many of them. Is it so beyond our wit to redesign work and workplaces to make the happiness of work available to all that seek it, need it?
I am lucky. I know that. I wish this luck could be gifted to any of that forty nine who like me desire and need the happiness of work. So to my list of jobs to be done while I am still on the right side of that ratio I’m adding ‘be part of making change happen for people with MS in the workplace‘.
Multiple sclerosis steals our future. We deserve the shining leaves of present happiness. We deserve the happiness of work.