It’s been a year. I can’t believe it, but it has. A year since my biggest MS “crisis” in the 20 years + it has been my companion in this life. A year since I knew that everything was changing, but did not yet know how. I still don’t, not with any clarity, but the foreshadowing of it is swirling around me like early morning mist in a valley; unformed, indistinct, elusive and yet present, noticeable. It would be so easy to look back with regret and bitterness – what could I have done differently, why did I not see it coming, why did I not heed the warning signs? It would be so easy to be angry – why me? It would be so easy to be sad – what have I lost, what have my children lost? And, I always suspected, it would be so easy to be frightened when that moment came. MS is a mistress of the unsettling – “I might, I might not. I might put you in wheelchair today, or tomorrow. But I might not. And if I do, I might let you out. Though I might not. I might rob you of your breath, I might not. I might be around the corner, and I might not. Live with it. Or not.” I had my moments of fear, of course, but when it came to it there was a calmness and peace I hadn’t expected. Realising the fall is coming is much more frightening than the fall itself. Perhaps it was because once falling, the respite from trying not to fall provided space and the energy for something else. Somehow in the midst of last year, and the months since, change has taken root. Still quite fragile, a lot of nurturing and growing still to come yes. But it has taken root and the first tentative tendrils are poking the heads above the soil.
I’ve been drowning in the sounds of Maya Angelou these last few days, her death last week another reminder that our mothers and fathers are leaving us, that generation that grew up with the fears and hopes of the Cold War, apartheid, class war, race war. Her words and her voice stay with us thankfully; a reminder that we do in fact have all we need to flourish and that (when) we don’t flourish it is a by-product not of ignorance but of fear. The fear that quiets the voice inside shocked by some act of cruelty or evidence of inequality in the world around us. The fear that averts our eyes when we see others in pain but worry about the consequences of helping. The fear that tells us walk away when our humanity tells us reach out. The fear that tells us stay still when our heart screams move on. So often in her writing she talks of stumbling, falling, and rising. As I grow older I find such strength in her words. Unlike Nietzsche’s bleak invective ‘what doesn’t kill you makes you stronger’ in Angelou there is an indomitability of spirit, a constant drive onwards, through, up. The fates can, do, throw much at us. And we will stumble, and we will fall, under the weight of all that. But we rise. Somehow we rise.
Still I Rise, by Maya Angelou
You may write me down in history
With your bitter, twisted lies,
You may tread me in the very dirt
But still, like dust, I’ll rise.
Does my sassiness upset you?
Why are you beset with gloom?
‘Cause I walk like I’ve got oil wells
Pumping in my living room.
Just like moons and like suns,
With the certainty of tides,
Just like hopes springing high,
Still I’ll rise.
Did you want to see me broken?
Bowed head and lowered eyes?
Shoulders falling down like teardrops.
Weakened by my soulful cries.
Does my haughtiness offend you?
Don’t you take it awful hard
‘Cause I laugh like I’ve got gold mines
Diggin’ in my own back yard.
You may shoot me with your words,
You may cut me with your eyes,
You may kill me with your hatefulness,
But still, like air, I’ll rise.
Does my sexiness upset you?
Does it come as a surprise
That I dance like I’ve got diamonds
At the meeting of my thighs?
Out of the huts of history’s shame
Up from a past that’s rooted in pain
I’m a black ocean, leaping and wide,
Welling and swelling I bear in the tide.
Leaving behind nights of terror and fear
Into a daybreak that’s wondrously clear
Bringing the gifts that my ancestors gave,
I am the dream and the hope of the slave.
It’s an appealing image for someone for whom stumbling and falling is not just a metaphor but a frequent reality. A reluctant left leg combined with damaged sensory and balance systems conspire to have me stumbling and falling on a regular basis. Lately I’ve noticed something rather odd – I don’t panic anymore. In the days before MS if I stumbled or fell I could often right myself or at least correct myself on the way down to minimise the damage. But I no longer have the capacity to do that. If I stumble there is less chance I can prevent myself from actually falling, and if I fall there is less chance I can prepare to land as best I can. Luck, or a nearby wall or person is necessary to stop a stumble becoming a fall. Once I am falling, then I can do nothing but wait to land and hope the positions of limbs and head are favourable for minimal injury, my laggard nerve signalling ensures no response will be quick enough to be of use. I used to find that sensation horrifying. Falling is bad enough but falling without an ability to prepare for landing is worse still. Of late I have realised that I am quite consciously “ok with it” when I do stumble or fall. I accept now I can’t control what will happen, and during that second or so of, and those seconds after, a fall I feel only curiousity and a little anticipation. And hope, a lot of hope. Which is rather how I feel now, having decided to leave my job for an uncertain future I feel only curiosity, and a little anticipation, and a lot of hope. Because of course hope is just another way of saying “And Still I Rise”.
Hope is born of us alone, but hope can be nurtured by others if we ask. This last year I’ve been so blessed by others – friends, family, loved ones and comparative strangers have encouraged, supported and shared so much with me. Perhaps I am more open to that now, certainly I am more open about my experiences. A year ago I wrote:
I paused before doing this of course – in the age of the confessional some things even now feel ‘close to the bone’. And yet… We wander through our lives as parent, friend (and ‘Friend’), child, co-worker (rant aside: I hate that word “colleague” – is it so much better to be a colleague than a co-worker, do we so despise the idea that we must be workers at least some of the time?), and lover. Along the way we reveal so little of our real lives, of our truly important experiences. We are happy to share titbits from our exciting holidays, or news of some of the day’s minor adventures or frustrations. But for the really big stuff, we are rarely happy to let it all out in anything more than a nod or an oblique aside. But…
I am so glad I only hesitated. If there is one thing I have learnt it is that my instinct to share my experiences, to write, was necessary if I was to rise. The writing has been for me, it always has been how I organise my thoughts, but the happy by-product has been finding others by being heard.
It’s been a year and in the fullness of that time, the richness of that time, I have gained much more than I have lost. Change is afoot, and magic is alive.