Thursday, November 10, 2011

“What is it like, living while your body is dying?”

When standing within a waterfall, I stand firm, letting it thunder onto and over me. I laugh, because it is terrifying, and if too weak to feel the pull downward, the dance of balance to not end fallen and smashed where I stand, then it never seemed to count. Standing in a waterfall like that is an attempt at control where it cannot exist.

An extra surge of water and I teeter, my tongue hangs out with the bleat of fear and surprise. My bare feet curl the edge of the rock, balancing against the polish and slick of it. I can see people watching, but I can’t hear them. My mouth is open and I am screaming, but all I hear is the water’s bellow as it rushes and crashes onward, with the sound rebounding and surrounding me.
I’d hike out to the waterfalls, or travel to them. And the unguarded ones, there I could lose myself in the falls, usually past a rusted ‘Danger’ sign. Inside the funnel of thrashing thunder, the sounds inside me, the voices outside, all are distant. The pulse of the river becomes my pulse, slammed into me from above, shaking the heart, ribs, into quivering legs. Inside me, in my mind, I imagine I can hear the howl from the water, pulled from the earth, as it shouts exultant. But the waterfall doesn’t know me, and doesn’t care about me. I remind myself of that. It has no fury, it has no anger, but it still pounds rock to broken shards and I am not made of stone.

I was asked what ‘it’ is like, living now? ‘It’ is that gorgon knot of pain, isolation, and the fingers and connections I feel leaving, no matter how much I yearn. It is this part of dying, while still desperately alive, when they can only watch.

“It is like standing under a waterfall.” My hands, my body are reverberating to the boom of a heart exploding. “It is like standing under the waterfall, and never being able to leave.”

At the gym I train myself to feel the tearing in my heart and keep going, and soon, I hope, I won’t even stagger as the searing pain mixes tears into the sweat rolling down my cheeks.

Feel it pound me, that waterfall, when I walk, when I wheel, when I fall on the floor of the gym, curling as best as I can into the fetal position. I hear thin voices, like whispers from afar coming from outside the body’s din. People’s voices are just noises bouncing off the eardrums, distant, like the wind that bends the dead grass which has pushed up through the snow. In here, I am still under the waterfall, and it shakes me, moving through and past me. I have to remember. Try, damn it, try to remember despite the clamor. Why isn’t it ever silent? I am keening in the back of my throat. No. No, that won’t stop it. I have to stand.

There is no way to ‘become’ the waterfall, for it doesn’t think, it gathers, it falls, and then pools and flows on. There is no managing it, just bracing myself among the thunder, pulling myself up once more. It is there when I am awake, when I dream, in the last moments of consciousness, and the first feeling that I sift through to realize that Linda is over me, the ambi-bag pushing out my cheeks and filling up the lungs…2…3…4 and push, as I breath again. I am back and I feel the roar of the waterfall slamming into me.

That is what ‘holding on’ means. And when I groan, wanting to collapse into wailing and sobbing, I remember that no one has chosen to be here but me. I remember those who held on, the friends who died, so many, and how they looked past the fury and spray and reached out to me because I was new and scared. They had heart.

But god, I get so tired.

It isn’t about ‘spoons’ but rather heart and grit. In the world where I stand and holding on, there is another world, which races past like a freeway, like the M4 of people moving so fast I can barely see them, or hear as they shout out about ‘life’ and ‘too busy.’ To hear 'life' and see the blur moving away while I am lost in precarious living is to hurt. But to do more in life than hurting, reaching beyond that, is like raising an arm from under the smashing weight of the waterfall, a mixture of defiance and joy. And so, there is an accomplishment in the mundane: reading a letter, even just eating is hard won, writing this, sometimes stopping and just breathing; a deep breath while wheeling, noting the last of autumn colours. Seeing the world I love, the people I love from further and further away is always bittersweet, but each moment or hour stolen is filled within not with melancholy but the kind of warm joy felt as a child from each page I read under the sheets. It feels like the memory of tying the knots on my shoes correctly. The secret smiles. There might not be anyone to praise the milestones, and knowing I am more than just blind enduring agony isn’t always enough, but it helps.

I know sometimes, there is in my eyes that pleading of a wounded and long hunted deer, or a fox chased to exhaustion, where beyond the survival, the rapid gasping which barely hold back the mewling, the yelp which asks ‘why?’ And in the eyes and the wail, a sound of desperate misery and the open face aching, delicate from betrayal. The eyes show a spirit battered and succumbed, opened wide, empty beyond the pulsating, the pummeling, and my eyes stop flitting from face to face and settle, staring in hope, asking silently, ‘Will it be over now?’


Linda McClung said...

What a beautifully written post, Beth.

I like your analogy of your life being like standing in a waterfall. It is very visual, and even though I've never stood under one, I can imagine how powerful it feels. Even just looking at a waterfall close up, you can see and feel its power.

You talk about the moments of triumph, like succeeding in pushing your arms up against the waterfall. When I see those moments I feel very honoured to be the one sharing that moment with you.

I've also seen the looks you mentioned in your last paragraph. I get all soft inside when I see them - the exhaustion, the pleading, the agony, the question of will it be over now.

At moments like those I think how brave you are and how selfish I am to want you to keep going. And I think I can't be selfish anymore - the price you pay is too high.

Petra Jonsson said...

Wow, what a beautiful post! Thank you for your wonderful words.

" raising an arm from under the smashing weight of the waterfall, a mixture of defiance and joy." - this is such a powerful picture. Thank you!

With love,
Petra Jonsson

cheryl g said...

Thank you Beth for such an evocative and moving post. Your words are so beautiful.

I have asked myself after using the ambibag on you if I was doing the right thing for you or the selfish thing for me. I feel like I am being very cruel bringing you back to the pain and suffering.

SharonMV said...

Dear Beth,
I love you, you are as hard and delicate as your words. Sometimes I stand at the edge of the waterfall, listen to the din, feel the spray. I can't imagine living in the center, standing up to that pounding water. The pleading look in your eyes - how many see it and understand? I feel it, have felt it in your words. People who love you, like Linda, see & understand. I am so proud of your milestones and wish you more moments of satisfaction & joy.


Raccoon said...

Sometimes it doesn't even need to be a strong waterfall.

A very interesting, apt, analogy.

JaneB said...

Oh my dear, such piercing beauty.

I'm still reading, still caring, still in awe of your bravery and your reportage from the path everyone will take.

profacero said...

Gorgeous work with images in this post, so vivid.

Lene Andersen said...

You are a brilliant writer, Beth. Your kill at creating evocative imagery is stunning - reading posts such as this is like a master class in writing.

And it is also a lesson in what life is like for you. Likening it to a waterfall is amazing - I really got that sense of inexorable "just is" power and your sense of isolation (sorry, being writer geek again when I should just be friend). I understand a little of it. When I had my big flare 7 years ago, it was like living behind a wall of thick glassbricks. It made it hard to see out, as well as in an hard to hear, as well. I lost a lot of people during that time. Being friends with someone whose first priority is getting through the day takes a level of understanding and commitment that a lot of people don't have. They may want to, but life goes on, they move on within it and

Kate J said...

The comment I posted yesterday seems to have vanished into the ether. Suffice it to say I found this a very beautiful and moving post. As ever, Beth. A lot for me to think about.
Love & peace

Lorna, Bob and Liam said...

This is a gaspingly evocative post, Beth.

It may very well be the best description of living with dying that you've ever written... it certainly is the best one I've ever encountered, anywhere.