Learning not to walk
We were staying in Devon in a little air BNB, The Rogue and I, just a few short years ago. We went to little pubs nearby, restaurants, sightseeing.
One day we decided to go to the beach, calculating it as about a 15 minute walk. This was only three months after recovering from my last relapse and my maximum walking distance was like the weather: unpredictable, capricious, and periodically pretty deeply unpleasant.
We got through the first 12 minutes of our walk pretty handily. We almost danced our way down gravel paths, over fields, excitedly nearing the coast with every step. Finally we could glimpse our destination, the rolling sandy hills of the coastline that gave way to the long beaches that heralded the water’s edge. Water that went on to the distant horizon, promising endlessly. There was only one final field between us and the beach. Maybe two hundred metres.
Tantalus meet fruit.
Under the surface the nerves that made up the information highway of my spine were managing damage from that last relapse. They were pulling in sodium ions to push impulses through sites of damage and then pumping them back out again. But these pumps use a lot of energy and while these cells recruit mitochondria to manage the power demands, the ATPase pumps can't keep up for long if the nerves are overused. The sodium channels take in too much sodium, overwhelm the ATP pumps and the mitochondria's ability to serve their power demands, and the nerve can't consistently polarise. Signals start to fail. The legs weaken.
Over time this process can even kill the nerve. But for now it is just temporarily failing.
We began moving over the field and the signals started to fail almost immediately. I found it hard to lift the legs, and they landed with greater impact than intended. My stance widened, my gait slowed, and I started to godzilla across the field. Except godzilla happily stomps through buildings and I'd stumble over a hedgehog. Even unstable or uneven ground was suddenly an existential threat.
I started to cry.
It is a desperate feeling when nerves fail. You experience your intent, as familiar as always, and you command your limb to rise. And in place of movement is a kind of neurological silence. An absence. Like the legs are holding their breath. Like they're suffocating. Your reaction is to send more signals, to force the limb to lift, but that just emphasises the growing distance between expectation and reality.
Without being able to lift the limb it caught on little hillocks, mole holes, surprisingly robust blades of grass. I began to stumble. Without the leg responding each little trip forced huge effort to recover, countless signals to the legs pushing just enough through to push the foot into position to keep me upright. I started to breathe deeply and rapidly, the system requiring huge amounts of fuel to manage even the most basic of tasks. And a fall was becoming increasingly likely with every step, one for which I could no longer hope to save myself, and any injury would cause the legs to curl and become completely impossible to walk on.
A pleasant walk had become an existential threat.
I really can't tell you how many times something ostensibly pleasant has ended in tears owing to MS. It is a thief of joy. It has also brought me the Rocinante, took me to California and Vienna, to my MS community in Ammerdown, to close friends and intense hugs. To love. It has brought me joy. Or perhaps I have made joy in spite of it, fuelled by it, with urgency because of its threat.
But on this journey on this day to this beach MS stole my joy. We made it to the beach and had a lovely time together. But that moment with The Rogue physically supporting my taller frame as I openly cried will stay with me.
Three years passed.
This summer we stayed in Croyde and took that same path to the beach. I took the Rocinante and wheeled all the way. Over gravel paths, across fields. And on the beach itself I could even stand and push the Roci over the sand.
These three years have been a series of wheelchair adventures. Up Butser hill being prayed for, up Pilot hill rescued by carpenters, trembling on the cliffside of the Valley of the Rocks, across narrow bridges over unnerved coy carp at a Japanese tea garden in California, and roaming around a wine reception at a museum in Vienna. Each trial has been a hammer blow in life's furnace as it forges me anew. And I'm getting stronger mentally and physically.
Though a relapse could end it all overnight.
The awful truth of this disease is that my massive efforts, the adventures to widen my world, the clutching to friendship like rafts in this storm, all just nudge the dice a little. Fate is still rolling and all it would take is one bad roll to end it all.
But that’s the deal. We don’t get to choose what happens next. We only get to choose how to live this moment, right now. If the monster strikes it will find us hiding under the table or it will find us freewheeling down a hillside laughing. We don’t get to choose whether the monster finds us, only the state it finds us in.
And so today the adventure took us to the beach and I was able to get myself there and back again.