Full Heart, Half-hearted

I passed a leaf on the path yesterday. Autumn arrived some time ago, but it’s a reluctant beginning. We’ve had an extraordinary summer.  Long, dry and hot. And the first summer in years that I have been able to function like a well person. Trips to the beach most weekends, drinking from the scratchy edge of the thermos cup, eating squishy sandwiches and luke warm sausage rolls. Lying on the blanket looking up at the sky, deeply content that it no longer wheels around me. I have read books this summer, lying on my tummy on the picnic rug, or sheltered by the beach tent.  The most memorable being Chappy and Being Mortal. And this summer, I have joined in, swimming in the surf, riding my bike, climbing the volcano that sits just outside my window. When I was sick I couldn’t make the walk up the steep track without the certainty that there would be payback. I couldn’t enjoy the views, bleat at the resident sheep or let the breeze push my hair back from my face, soothing the heat of my exertion. The few times I managed it, it was with teeth gritted, heart hammering, nausea rising. There is a seat up there, on the lip of the crater. It looks towards our house. It is a favourite spot, not least because I used to look at it from my bedroom window and despair that I might never sit up there again.

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But now I can.

Yesterday, Zed joined me for a walk up ‘our mountain’. He was keen to burn off some excess energy, I’m trying to improve my fitness. Six years of an extremely sedentary, sometimes horizontal life, is hard to physically bounce back from. But now I have a personal trainer, a plan, and yesterday it was my homework to go for a ten minute walk; an as ‘hard as you can go’ kind of walk. The kind of walk that our steep sided volcano track was built for. So Zed and I set off down the road.

I am blown away by how beautiful this country is. We live right in the centre of this sprawling city, but there are green spaces and volcanoes dotted all across the urban landscape. And trees, so many beautiful trees. Trees fill me with calm.  Look at this beauty.

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At the start of the track my intrepid 8 year old darts off to the side of the volcano: “meet you at the top Mum!” he shouts, already shoulder high in grass.  He’s climbing directly up, I’m taking the track. At the top he calls out that he’s going to run down into the crater and meet me up on the other side. He’s always been a ‘road less travelled’ kinda kid. I smile at him and relish the solitude. It’s gorgeous up the top here. Park benches dot their way around the crater rim, looking outwards.

Our national treasures of trees, the Pohutukawa, reach their arms across toward one another, high on the hill, circling the site that once was home to a Maori Pa. You can see evidence of their settlement in the kumara pits that still exist. In true Pa fashion, this crater would most likely have been barren of the grass it now wears. The ground would have been cleared around the whare. Now, the crater is resplendent with a thick carpet of grass.  Around the outside of the volcano, untrimmed by grazing sheep, it is long, rippled by the prevailing winds. But in the shelter of this hollow it resembles an inverted paddock. Like a fish-eye lens has warped the contours of the land. It drops away and lifts again in a perfect bowl. It would have been a safe and easily fortified home for those Maori villagers.  I wish I could go back in time and see how it was, see the cooking fire smoke and listen to the singing.

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Too soon, I’ve reached the far side of the crater rim track. My boy is ascending the steep edge.

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We hear voices, echoing through the natural amphitheatre, we are not alone anymore. A group of teenagers laugh and stumble through a gate that connects the volcano to the streets below. They take selfies and videos to upload onto their social media. One chases a sheep and another calls out “tackle him!”. The sheep has more wits about him than the boy, and is up the mountain faster than a goat. I smile and reach for Zed’s hand. “…it’s nice up here, hey Mum,” he says. His cheeks are rosy. We pass a stand of bamboo and slap the mosquitoes away.  It is nice up here. Even with other people around, it’s beautiful and serene. We come across a few more groups of people. I take some photos and think about how I would like to share them with you.

The two of us stop for a little sit down and I notice for the first time, a plaque attached to the bench. It’s a memorial seat, placed there by the wife of  ‘Michael’. A beautiful spot for remembering. I think about them, the people I don’t know. The words fill my heart. This is the song of my soul’s learning through all those years of illness.

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We sit and think for a while before heading home. Of course, Zed makes off to slide down the slope of the hill, while I take the dirt track. Back on our footpath, I see the trees turning and notice the colours of autumn, slowly but surely transforming the streets.

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I long for the cooler weather, but I have loved my first real summer in years. I realise I am half-heartedly welcoming my favourite season. And just as I think it, I see it, a half-hearted leaf, laid out on the footpath in front of me. Maybe, this year, nature feels the same as I do.

Full heart; half hearted.

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Shipwrecked

There is a specific kind of guilt that can plague survivors who got through something life threatening and come out the other side. Maybe it was an accident, trauma, war, hostage situation, cancer, domestic violence, child abuse, hurt. The guilt swoops in once they realise that they survived but others did not. So the question ‘why me?’  ghosts through their minds, shining spotlights onto every part of them that is not worthy of the gift of survival.

I do not deserve this. Everyone does. So why did it happen for me and not for them? How can I make sense of it? What hierarchy of soul assets could ever possibly qualify me to deserve reprieve when others get none?  None of what I have within myself is superior to any other human. Is it all pure chance? Luck? Universal benefaction? Godly miracle? Alignment of planetary bodies? Karma?

 

picture of an oil painting by John William Waterhouse (1916) of a redheaded girl looking out to sea at a chip being wrecked on the rocks.
Oil Painting by John William Waterhouse 1916 “Miranda -The Tempest”

Why me?

Why not me..? Answers back. That small audacious whisper. I hush it back into it’s corner. How dare it speak up? The mirror in which I examine my value magnifies my insecurities.

It was easier to wonder why not me when I was sick. Worthier. It was easier to push, using all the survival drive my physiology could muster. Why not me? I tried and sought and searched and strived. I wanted to survive. And now that I am thriving?  I wonder if it is a monumental case of mistaken identity, was it meant for me?  I fear that I cannot do it justice. I exhaust myself with my desperate need to never take anything for granted; gripping on to the epiphanies of illness.  I prostrate myself into works of compensation, trying to redress the balance that tipped things into despair and took so much from the people I love. I burn the energy that has been gifted to me on the backlog of yearnings. The things I missed. The things I couldn’t be. The person I think I could be but maybe, will not.

I just want you to know, you who continue to suffer, I want you to know that I have not simply sailed off into the sunset. I struggle to write for you because I feel like my remission has given me something you don’t have, and that feels unfair, like a betrayal. I wonder if you find my words aggravating, or boastful, a reminder of all that you cannot do. Those among you that are close to me have assured me that my story brings you hope, but I worry that it also brings you pain. Because, see? There I go again. Doing the things you can’t do, living the life that eludes you. And I do want to live that life, because it is mine.  I even want to go sunset sailing, sometimes, though I have no sea faring vessel. I want to run away; I want to stay.

One of my favourite poems is by Christina Rosetti. There is a line that expresses the way this feels

“When I half turn to go… yet turning, stay.” 

I have never been a goodbye girl. I won’t do it. So I remain here, caught on the cusp of sick and well. My hand reaching out across the divide between our experiences, the distance between our hands growing every day.  I think I have that hated thing called ‘ableism’. Because I do believe, with all my heart, that there is a massive difference between being well and being disabled through illness. And I think it is better to be well.  I think most of you with Dysautonomias think that way too, but dwelling on that is too painful. When ‘well’ is out of reach, people make do, we find joy, we build meaning where we are. It is a triumph of psychology. By far, the hardest thing I have ever done, was staying afloat through all those years. I was not always successful. When I sank under, you lifted me.

And here I am, washed ashore; not drowned. Dry, standing at the edge of continental opportunity. I have caught my breath. But I stare back out to sea wondering if you are treading water in shark infested waters. Willing you to keep your heads above water, to find the flank of our ship wreck; to hang on. My soul flies across the deep but the winds and tides can’t hear me. I am impotent to ease your suffering. And I am sorry.

So sorry.

Something Beautiful

When my kids were still really little, every night at bedtime, we’d sing a little song. It was always to the tune of one of my Mum’s old favourite church songs “Something Beautiful” but the words changed every night.  We’d take turns singing about what happened that day. Always the highlights.  It was a nice way to send them off into dreamland in a good frame of mind. It always started with “Something beautiful happened today…” and the rest would all depend on what loveliness had punctuated their day. I loved hearing their little voices sing about the things they appreciated most. It was often the little things.  “…I wore gumboots and splashed in the rain” or maybe “I got scratched by the cat, but I was really brave”.  Every line had to finish with the long ‘a’ sound, so words like ‘hooray’ and ‘play’ and ‘stay’ featured heavily.  If the syllables were too long for the melody, we’d race the words to fit them all in and collapse into giggles. Sweet moments.

Since my appointment with the Newro yesterday, I’ve been humming that little melody.  I feel happy and hopeful and positive.  Because something beautiful happened to me…

remission

The ‘Newro’ (new neurologist) was brilliant.  It was so nice to be welcomed into a doctor’s rooms by a person with a genuine smile and lovely nature.  He had read through my notes and proceeded to ask pertinent questions. We talked about the difference between then and now.  He was up to play with all the things the Immunology department have discussed with me. He explained that my response to the infusions was not a picture they had seen before with Autonomic Neuropathies, but it had been seen in other Neuropathies, like Guillian Barre Syndrome. So whatever the mystery-antibody  is that has been causing my problems was impairing my autonomic ganglia, but not killing them off. Which is why I have been able to regain normal bowel function and improved bladder function. It’s why my cardiac episodes have dropped off. Why I am feeling so much better. My nerves weren’t irreparably damaged, just interrupted… for a long, long time.

We don’t know if I will continue to feel well, or if my picture will be a typical auto-immune relapse/remission type cycle. But apparently the fact that I responded so rapidly to the Methylprednisolone  infusions (within days of my first dose I began to see a difference) is a tick in the box for a longer term remission! Oh my goodness I hope so! The Newro said we can’t crystal ball gaze, but if I begin to slump, and the slump lasts for weeks not days, I need to go back and see them. But in the meantime, no outpatient clinic!  I’m hoping that General Medicine and Urology will take the same view and I will begin a whole new letterbox experience.  No more appointment letters, confirmations, medical paperwork.  The thought makes me giddy (in the best kind of way, not the old way!).  I long for a calendar that is hospital appointment free!

Also The Newro has agreed to be my Neurologist if things go south again.  I am so happy about that, he seems a good sort to have in your corner when you need a super clever brain around.  He’s all things great doctors should be.  Compassionate, no hint of ego, thoughtful, responsive, kind, clever and thorough. It all makes a very impressive package. I hope there will be other neurologists who learn from him during his career, he has a wonderful approach and manner. I do wish I could bottle that and dose them all (well, doctors of every speciality) with the same qualities.  If that man ever ran for President of the World, he’d have my vote!

So my dear Dysautonomia friends, I don’t know if any of this will be helpful for you, but it has been for me. I feel like my battery is recharging. I am feeling better. The more I can do, the better it gets. In there among the good days there are still some crap days where I feel like I used to. It’s hard not to panic when that happens, but so far, every slump has been shortlived.  I wish I could tell you exactly what antibody and genetic disposition combined to give me the diagnosis I have had.  We haven’t been able to isolate or understand either. But for me, whacking the immune system with a sledgehammer has made a massive difference to my quality of life. I hope you find your answers too, whatever they may be. And if your picture is similar to mine, please get yourself to an immunologist!

Here is an instrumental of that melody. Something Beautiful, Something Good.