One Year On/ The Gift of MS

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Box of darkness

Today has been my one year MS anniversary. I feel I should mark the occasion in some way. In reality, tonight is open evening so I will be working; today has been a busy day of teaching and by the time I arrive home I will be fit for nothing but bath and bed. A rather fitting way to be commemorating the arrival of this condition. Well, the arrival of my awareness of it at least.

The busy-ness of the day is a blessing, for I would have no clue what the social conventions or norms would suggest as a proper way to mark this occasion. It is certainly not cause for a celebration – no balloons and bunting. I have had the good fortune to have met a few fellow MS-ers over the past 12 months, and I doubt any of them would consider it to have been something they greeted joyfully and welcomed into their lives with open (and probably tingling) arms.

Yet, oddly, neither does it feel appropriate to mourn and curse. MS has not ruined my life. Yes, I have had (fortunately very few) weeks when my mobility has been seriously halted; many more weeks and days when it has been slowed, paused and made to stop and smell the flowers on the journey for a well earned rest. My legs have regularly felt like they were made of the heaviest imaginable metal or bricks; my brain has become foggy, especially under even mild amounts of stress or pressure. But is my life now worse because of this condition? Actually, no. I may even dare to suggest that it is now even better, more fulfilling, more filled with a deep sense of gratitude for even the tiniest of things that I would never paused to consider a blessing over a year ago. Every good day makes me thankful, mindful of what I am able to accomplish, and acutely aware of the sensations in my body that are enabling this, however temporarily. Bad days are a timely reminder of the kindness of friends, the thoughtfulness of those close to me, the wonder of doing less (and sometimes even nothing at all), the pleasure of the slowing down of life’s ebbs and flows. A chance to pause and reflect.

I am blessed that the physical pain is regular but transient – a nightly visitor in the form of the MS hug which takes my breath away after a few reclined hours;the floor takes on the characteristics of a vicious acid when it has been in contact with my feet for too long, and there is no telling what “too long” entails until the sensory reminder kicks in. But rest, meditation and listening to this body of mine as it screeches its objections are all able to soothe these sensations.

As each moment passes, I am encouraged by MS to live in it fully, to welcome whatever it is bringing me and to allow myself to feel wholely and deeply. The hardest part of this condition is its unpredictability, and I have written before about the difficulties this can bring. Yet, even this, once accepted and even embraced, can be a blessing. It is impossible to spend my time considering what the future holds – the distant future of how this disease might progress in years to come, as well as the very near future, even tomorrow; will my legs be working? Will I have a relapse? Will I be overcome with exhaustion and forced back to bed? Will the next lesion bring a new nightmare symptom (such as affecting my eyes, please not the eyes…)? These questions are forced into the recesses of my mind, not even delved into during the darkest hours of nights when the hug keeps me awake. I no longer waste time on anxiety over minutes that have not yet arrived. The only sensations I concern myself over are those I feel right now, in each moment.

And each moment, so far, has brought a sense of gratitude. Maybe because I realised that this is the best my condition will ever be; because an awareness of the impending and inevitable decline of a degenerative disease makes you think that one day you will look back and realise how good you had it right now. And I do not want to live with regrets in the future about not appreciating what I had. Over a year ago, I would have been always striving for more, yet now, this is enough. I can walk through the house and into the village (flowery stick in hand if needed). I can see, clearly and without pain. I can dance (I mean, I am physically, if not artistically, able) when the mood takes me. I can pick up my daughter and cuddle her wriggling body close to me, aware of the warmth of her for the brief moment before she objects that she is too old for cuddles now. I can snatch the pain-free moments, sink into them and give thanks. I am thankful for things that I never even considered to matter until last year.

So of course my life is better. MS has made me appreciate my life, in its entirety. There are so many things in it for which I want to give thanks. Thirty days of gratitude, documented in this blog, more disparately than intended but still a work in progress, will not address all of them, nor do justice to those that I do acknowledge. But today, I want to express my thanks for all that the last 12 months have taught me. These lessons that I never knew I needed to learn, but I am all the better for having received.

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