#MSMakesMe

MS Awareness Week 2023 runs from 24–30 April. This year we’re focussing on experiences of MS using #MSMakesMe.?

MS makes me slow down. And I hate it. It makes me feel vulnerable. In a bid to use my stoppage time usefully, I write each time my symptoms make me pause on a walk, or during a sea swim.?

#MSMakesMe stop, but I don’t have to dwell on the why. These are excepts from my benched moments, times when standing up or walking on was not an option. Just to show that, it does not really matter what we expect from life, but rather what life expects from us.?

Stopping by the Sea on a Windy Morning (muscle stiffness and spasms)??

Tonight as I walk Kilclief, dark clouds pass over the incarnadine moon like a large cracken, the tendrils of mist separating in the wind like tentacles.?The waves swell before crashing in white foam that made the sodden sand look like molten silver. With such ferocity does the tide ebb and flow that, not waiting for one wave to crash, another comes and another so that as the first wave returns, it meets the second and a duel for supremacy ends, ultimately, when the first gives way and ebbs beneath a third.?

I’ve seen it like this on dawn walks.?It’s invigorating. I find the sea energy electrifying. And I wish I had enough strength in my muscles and control of my body to actually stand in the water tonight.?I settle for the gentler, manageable swirl of ebbing waves infused with sargassum.

Benched (difficulty walking)?

Benches are paradoxes. There is nothing so lonely, or so welcoming. They proclaim the potential of rest. They evidence the absence of company.?

They remind me of the temporary nature of rest - when I feel I have benched myself for too long, I must loosen up the unessential. And the need for sufficient rest – only when I get lost in contemplation will I discover vaster space, supernal silence and unfathomed peace.?

There is only one way to understand a lonely bench in a park: sit on it; watch whatever it is watching; listen whatever it is listening to! This makes their popularity cyclical. There’s time to sit on a humid autumn bench to feed the poor birds or to think the dying leaves, but in Winter, the bird can starve and the trees are dead anyhow.?If it’s a bright Summer day, we’re enticed to sit beneath its boughs for shade and in Spring we’ll zoom in on its emerging foliage, if only for Instagram content.?

Park benches feature surprisingly often in pop culture, from books to movies to art to even video games. Think of the ending scene in The Catcher in the Rye, where Holden Caulfield watches his sister Phoebe ride on a carousal while sitting on a bench in Central Park, feeling oddly and uncharacteristically happy as he sees her go round and round. And in order to save your progress in the video game Hollow Knight, a player must rest at one of the nearest benches that are scattered all over the game’s map.

And yet, their design can be malevolent - subtly encouraging or discouraging people from participating in certain social behaviours, e.g. arm rests to prevent homeless people from sleeping on them. I hate those kind of benches. They speak to the exclusion in society. Research has linked social isolation and loneliness to higher risks for a variety of physical and mental conditions: high blood pressure, heart disease, obesity, a weakened immune system, anxiety, depression, cognitive decline, Alzheimer’s disease, and even death. Park benches are one powerful way to combat loneliness and, by extension, can help to reduce related health conditions, e.g. the brightly coloured ‘conversation bench’ in Botanic Gardens. These are particularly important for people who find cafes too expensive or may be marginalised from other collective environments, such as work or education.?

Togetherness, community, people watching, resting on a journey, patience, regrouping, safety, contemplation – benches are a place of repose, spaces of sanctuary.

Being Blue (stress and anxiety)?

I walk near the sea in Kilclief. Here, the sea is many colours; violaniline, caesious, cerulean. The beach at Kilclief has a hyaline texture, being fed by lough waters as opposed to an ocean. In the darkness of the astronomical twilight, the waters are sloe coloured, like Indian ink into which a writer might dip a quill and write a tale. I imagine bathing in them, emerging sable-stained, although I know the waters merely mimic the palate of the sky.?

I sit through to morning. Tiny opaline waves lap the sand, inching closer to my seat on the coastal rocks in the bay. Further along, the water gushes out quickly, swirling around the ankles of unsuspecting dawn bathers and tugging at their heels, sometimes sinking their feet into the soft sand, but always creating rivulets in the sand on which the sun glistens and creates the impression of white noise. The seaweed looks like liroconite veins through the chalybeous waters.

I wonder what it would be like to go under.

Fighting On (numbness or tingling in different parts of the body)

As a child, I came to Newcastle once a year for week’s Summer holiday. Our parents booked a taxi and loaded it with enough provisions to keep a small army for a month. We were a small army, always joined by cousins, nieces, nephews, friends. We knew the hearth in our home carried with us and so all were welcome with no fear that anyone would outstay their welcome on the trip. As I grew, and learned to drive, Newcastle became the place we drove to at night to see the full moon; the place to go for a lazy Saturday, the promenade we walked to get take-away tea with fish and chips, ritually consumed on the beach. It was a haven then and is no less now. The glory of sun baked sand between my toes has given way to an appreciation of distant waves and the salty breezes on which they whisper.?

I’ve learned that life with MS is like the sea. Waves will try to knock you down and push you back to where you started but once you fight through them, the entire ocean is yours. To those who are fighting today, may you find your ocean!?

Cooling Off (pain)?

When sadness strains my soul, gazing to the night sky with feet submerged in a still sea creates the weightlessness of drifting in space.?

Lonely, unwanted, unneeded, and yet the universe reminds me that the same unfathomable force that brought me to the sea hung the stars.?I’m inspired to hope.

Isn’t that a cruel madness??

I sit on. The two most powerful warriors are patience and time.?The sky is painting itself into deeper shades of night as I do. What a wonder.

Sitting alone, feeling tiny, humbled and inspired by the vastness of the ocean, watching the sea kiss the shore again and again, I am reminded that saltwater cures all wounds. But it won’t cure MS scars.

Exhalation (breathlessness)

Breathing is the greatest pleasure in life, at least, it feels like it is when you’ve fought for it without cause.?An MS hug comes when, suddenly, there’s an uncomfortable, painful feeling of tightness or pressure, around my chest, like arms clamped too tight for too long and without consent. ?The panic can set in, so I do what I can to take myself back to my body.?

The fresh scent of brine assails my nostrils with each squall. Each squall lasts about twelve swashes.

Each swash announces it’s arrival with a plopping thud. Each backwash rattles the shingle so it applauds the waves retreat.?

I taste salt on my lips and turn my face away from the raging tempest to the Mournes. The mountains form a mighty crescent, whose steadfast horns rest silently in the sombre firs of Newcastle.?

I breathe deeply, until sweet air extinguishes the burn of fear in my lungs and every breath is a beautiful refusal to become anything less than infinite.