Being Sick

Recently I saw a cartoon in The New Yorker about a woman who started a gluten-free diet. She’s having lunch with a friend in a cafe and she says, “I’ve only been on it for a week and I’m definitely more annoying.”

That’s me. Well, sort of. 18 months of chronic pain and fatigue and something called Postural Orthostatic Tachycardia Syndrome (ten points if you say it three times fast) has led me to try it all. Gluten free, lactose free.  Green smoothies, acupuncture, kale. Blood tests, specialists, more specialists. Naturopathy, massage therapy, meditation. I drew the line at getting an aura reading, but to be honest, I’m not ruling it out.

“When in pain, get on a plane,” goes the Territory saying. I’ve tried that too.

I thought I knew what words like fatigue and pain meant, but they keep changing. Some days it’s like being knifed, or having multiple fractures inflicted down my spine. Other times I feel like I’ve climbed a mountain or run a marathon, which is a pretty sick joke. My muscles pop and spasm. Some days I lie down after taking a shower and before I have breakfast. And then I lie down again.

On the days I can’t leave the house, I know what the ceiling fan sounds like on all three speeds. I hear the school bells across the road ring for each period; I curse the neighbourhood whipper snippers and the hoons that speed around the roundabout. I get up and the room spins again.

It’s easy to feel very alone sometimes and I do.

But every Friday, I go to a yoga class in Coconut Grove.

It’s a suburb that’s part hippie, part public housing and part industrial. It begins on Dick Ward Drive with The Parthenon, a Mediterranean style home replete with crumbling columns and discarded slabs of concrete. The owners have been building it (or not) for over a decade, maybe two. Amongst locals it’s also known as “Rome wasn’t built in a day”.

There are battle-axe blocks that lead to the mangroves. There’s a drying out clinic. There are generations of Aboriginal families who live in run down units. Further along, there’s a locked fence with a sign saying “Burial Ground: Do Not Enter”.

In between, there are panel beaters, picture framers and furniture importers. Warehouses filled with mahogany furniture and day beds from Indonesia, brought in by the container load. We bought our bed from a guy there called Knocker, who drives a bright orange sports car with a personalised number plate.

Down Caryota Court there are massage therapists and Family Planning offices. There’s a burlesque dance studio. A German guy called Martin runs the town’s only vegetarian café.

And then there’s the yoga space.

It’s a strange and surreal precinct to go and get your Iyengar on. Sometimes the next door neighbour likes to weld during our class or play records, usually The Ramones or Hoodoo Gurus. He listens to that music the way it is played: loud.

But for the most part, this yoga class takes me out of Darwin, at least for an hour and a half, and away from the strut, the larrikin antics and the bar stool bravado of Territory life. It’s a warehouse sanctuary of wooden floorboards, with a little garden brimming with tropical plants. In between bromeliads and banana trees sits a small, smiling statue of Buddha, decorated with hibiscus flowers and rows of tiny beads.

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There are eight of us who go regularly and almost everyone in the class has some kind of significant illness or injury. One man has two toes missing. He comes every week with his girlfriend in a beat up station wagon. Another woman broke her back last year. There’s the guy I went out with a couple of times, who had his brain smashed around in a motorcycle accident on Daly Street. And there’s me.

We don’t talk or gather for coffee afterwards. I don’t know where they live or if they work. Except for the guy I used to date, I don’t know their names.

But each week, I know that somehow, deep in the neurons and blood cells of bodies that don’t work like they should, they understand. We’re in it together.

I can’t make a joke about downward facing dog: none of us can do that anymore. But we twist and turn and stretch. We bead with sweat in the irrepressible Darwin humidity. We reach through the pain and the sick and the heart break of what we used to be and who we are now.

The man with three toes always seems to know who is having an especially hard day and he helps to put away their mat, bolster and blankets at the end of class.

We don’t say goodbye when it’s over; but each week my heart is warmed by this motley crew and this chequered suburb, which somehow has enough room for our collective pain, all of it, and our hope for better things to come.

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14 thoughts on “Being Sick

  1. Oh Miranda, what can anyone say?? Thanks for sharing, and if it helps, lots of people care about and ache for you. Keep hanging in there, and keep writing. Please….

  2. Hi Miranda, a beautiful post. My husband has had un-diagnosed chronic pain for many years; it is difficult for those of us without such pain to understand what you experience and to always act from compassion. Reading about someone else’s ongoing pain issues, especially when written so beautifully, gently remind us of the deep need to support our loved ones with patience, compassion and caring – thank you.

    • Oh Lululiz, thanks so much for your thoughtful comment. I’m so sorry for your husband and also for you, because I think that the not knowing, the feeling helpless while someone you love hurts can be worse. What else can we ask, but for compassion for ourselves and for others. Xx

  3. “We reach through the pain and the sick and the heart break of what we used to be and who we are now.”
    You are still beautiful to me, as you always were. While I can only begin to imagine what you struggle with each day, I consider myself lucky to read your evocative writing.

  4. I’m so sorry to hear you’re going through such a difficult time Miranda – it sounds terrible. It doesn’t show in your writing! I enjoy your blog very much – it’s one of few that I follow – so keep it up. Maybe you can write your way out of it! The yoga sounds wonderful, and reminds me that I should be doing it too…

    You are a good writer – your blog is engaging, articulate and interesting. When I’m writing I find whatever’s bothering me disappears for that time, so I hope it works for your much stronger challenges.

    Hope you have a good day today, best wishes,

    Jo van Os

    • Big thanks, Jo, and means so much coming from you…Outback Heart has been a huge inspiration to me. Everyone should read it. Yoga and writing should probably be prescribed for all ills and heartbreaks, I think… Xx

  5. Hello beautiful Mirans.Big hugs from me and Mr.N Has anyone mentioned the possibility of you having Lyme Disease? Though not recognized by standard medical authorities in Aussie land there is hope and treatment available. Mr.N and I look forward to hearing from you and Mr.T.Otherwise contact via Ruthickles.Thinking of you! XXXXX

  6. Bless you! That you give so much of yourself through your writing when the journey you are on has challenges most of us cannot begin to comprehend. You are an inspiration Miranda & I wish you the good health you so deserve. xx

  7. Read your story in the Newspaper yesterday and it’s unfortunate you have to deal with dear old POTS too but I’m very glad to see you’re seeing improvements. (Plus I haven’t met anyone with the disorder in Darwin either) I’m currently 16 and POTS has taken many things from me including; school, music, sport, concentration (having so much trouble typing this out now), a large amount of weight and basically the things a teenager my age usually does like hanging with the friends ect but I haven’t been able to do those things for almost two years.

    I didn’t get diagnosed officially until last month after my tilt table test. Medication hasn’t helped but I was wondering how’s your blood pressure when you stand? From what I gather there are two types of POTS and both require different treatment so I’ll see how lucky I can get up here with the doctors I see.

  8. I read with interest the article regarding your illness in the Sunday Telgraph, Body & Soul recently. 7 months ago I was diagnosed with chronic fatigue syndrome. Like you I’m trying everything to improve my quality of life, including massage, nutritionist, naturopath, chiropractic etc. I had an appointment with my GP today & took the article to show him. He had also read it & has arranged for some further testing. I feel very lucky to have found a great GP who is happy to explore all avenues & never made me feel like it’s all in my head (as I feel sometimes) or prescribed an antidepressant! I’m thankful for people like yourself who share their stories & give us fellow Chronic sufferers options & hope for a light at the end of the tunnel!

    • Oh Sally, so sorry to hear you’re in the same boat. Sounds like you have an understanding GP which is the most important thing. And you are doing all the right things, so hang in there. Good luck with more testing – sending you lots of good healing vibes for the journey. Xx

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