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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Build me up, Buttercup.

Every year I imagine I can be prepared enough to slow down the Term 4 Tornado.
But I never can.  The calendar and the inbox cram themselves with things I can’t do justice to; my daughter’s graduation banquet, my son’s camp, athletics day, events. I start to get that panicky accelaration feeling you get when the roller coaster takes off.
I’m rattling down the track and the wheels start to wobble. I grasp around for an emergency brake, but this roller coaster doesn’t have one. I look ahead to 2016 and brace myself. I just need to make it to that shiny horizon. That beautiful, new, unsullied year. Then I can wrestle some peace out of the pace. I just need to make it there…

Things have been a bit crazy.

I was supposed to be graduating from my programme on Friday, but I am not. Some people can get over things quickly and move on.  I’m not one of those people. It takes time for me to feel alright again after I’ve been kicked. So I am staying away and I am sad that I won’t be with my cohort for their very special night. I’m sad all of the year’s work and thinking won’t be recognised for me. I am told this is my choice, but circumstances made it very difficult for me to make a different one.

And there has been the situation with the grandies, all the to and fro’ing. And an awful phone conversation this week where I was told all the meals I made and the efforts I made to help were not wanted. It felt like a sucker punch to the guts.  I guess I have been feeling sensitive anyway after the flak I copped for my blog. To cop flak for trying to be a good daughter in law was just too much, I held it in until he had hung up the phone.  Then the floodgates opened.

I went for a walk to the park at the end of our little street. I couldn’t stop crying; even big girls cry sometimes.  I stared up into the branches of a massive oak tree and tried to rationalise all of it, I looked around the park. Tried to find a clear headspace where I could step away from the noise and mess in my mind. And then I saw this. A small patch of weed infested grass. The sun, dappling across the tops of the grass. Tiny yellow buttercups holding up their little faces to the warmth.  Uncomplicated. Just, there. Just being them.

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I decided I need to do a bit more of that. Just letting the sun soak into my face. Just sitting in a field. Just looking at the flowers. Just being me.

I’m taking myself away with Flo this weekend. Away from the sad feelings I have about missing graduation. We’re going to have long breakfasty-lunches and stroll slowly along Oriental Parade. We’re going to chat and laugh and enjoy the easy company of each other and the joy of no responsiblities. It’s going to be a tonic.

What does your weekend hold?  I hope you get the chance to be like the buttercup. Even for a little bit. The new year is just around the corner …I am fairly confident in my prediction that there will be sunshine. 🙂

 

 

 

Maybe? Not Yet

When is the right time to start using a wheelchair?

It’s something I have been contemplating a lot.  You don’t want to start depending on one too soon.  But then, should you increasingly limit what you can do simply for lack of one?  And what to do with the pride factor?

My mobility has been on the decrease. I can walk short distances, but even walking up to my daughter’s school, just around the block, is now too hard.  I use a cane most places I go.  It helps me a little with balance, gives me something to lean on when I feel weak and has a little fold out stool so I can sit when I need to.

Walking anywhere, with the cane, or without is exhausting for me. It takes the lion’s share of my energy. I can still drive, which I am grateful for.  It’s just that doing much of anything once I get to my destination is so hard.  I’ve been using the complimentary scooter at the mall for the last few months, it’s been a big help.  But when should I start thinking about my own wheels?

When I went to Adelaide last weekend, I organised a hire chair for the duration of my stay.  I didn’t want my limited mobility to stop Erica and I from getting out and enjoying the city. I also didn’t want her to have to push me around, I’m an independent sort of person, so I wanted to ‘drive’ myself.  Walk on Wheels didn’t have any scooters available, so they hired me an electric wheelchair.  I figured it would give me the perfect opportunity to try out using a chair for future reference.  It was vastly superior to a scooter in terms of manoeuvrability; turning on a dime. Somehow, because it is smaller than a scooter, it is less conspicuous too.  It cost me $25 a day to hire the chair, plus fully refundable deposit and a delivery charge. I had the larger “Maverick” electric chair, I’m a bit of a big bird. It was the perfect size for me.

Me with Maverick(3)

The Maverick and I got acquainted very quickly!  So easy to move around, steering is a doddle and the joystick style controls really are intuitive. I liked the little horn.  It wasn’t so loud it scared people but was enough of a beep to let them know someone was there if I needed to discreetly get their attention.  I took the chair for a spin down to the tram station.

Trams in Adelaide are perfectly set up for people in chairs.   The stations are all ramped, and once on the platform, you just wait on the little blue mobility park.  As the driver approaches, he waves to let you know that he’s spotted you.  Then he pulls the tram up, hops out of his seat and lowers the ramp (some trams have folding ramps and others have pull out ramps).  There is a spot in the tram for the chair and an accessible stop request button right next to your park. The driver asks where you are hopping off and returns to assist you off the tram when you reach your destination.

Victoria Park Tram Stop

During my stay, I took the tram to Glenelg (about forty minutes away), Black Forest, and to hop around the city centre. Because I could power down my chair while in the tram, I was able to save battery power too. The excellent tram system saved me and my chair a lot of energy!  I was really impressed with the warm and friendly staff on the Adelaide Metro Transport system.  I’m sure it isn’t policy, but every time I went to pay for a ticket I was waved away. So nice to be treated with such kindness when you are staying in a foreign city!  Whoever complained about Australians hasn’t visited Adelaide!

I encountered a few problems with accessibility along Jetty Road in Glenelg.  It’s a shopping street that leads to the famous jetty and is lined with gorgeous shops, at least half of which I couldn’t get into with the chair.  But Adelaide Central caters beautifully for people in chairs.  Almost all of the shops I went to in Rundle Mall were easy to navigate without damaging the furniture!

I felt liberated in that chair. I could go where I wanted to go without worrying that I would ‘crash’ mid outing and have to get horizontal in a hurry. I felt free to move at a pace that was more natural than my own snail’s pace.  I could relax and enjoy my surroundings more.  It was slightly strange to be short though!  I am six foot tall when I stand on my own two feet.  But it was so good to be able to MOVE distances for longer. I loved it.  Being in a chair is still taxing, so you still need to budget your energy, once you are used to how much it takes. But oh, not nearly as spoon bending as trying walk distances. It felt so good to feel part of things in a much more active way!  Now that’s ironic.

We have decided to wait and see what happens in the next wee while.  In spite of the huge difference in what I was able to do when I was in a chair and my happy experience of things in Adelaide… I am just not ready yet. Our big hope is that the steroid therapy and possible IVIG makes a difference in the area of muscle weakness and neuropathy.  If that happens, I might be able to be more mobile on these legs of mine and the whole need for wheels might diminish.  Here’s hoping!

If it doesn’t work and things continue to decline, we’ll just have to find some snazzy wheels for me to buzz around in.

If you have Dysautonomia, or another medical condition that requires you to use mobility aids, do you use a chair? What made you decide it was time?  How do you feel about it?  Does it change the way people relate to you?  So many questions…!

FREEDOM!(1)