Showing posts with label chronic fatigue synrome. Show all posts
Showing posts with label chronic fatigue synrome. Show all posts

Sunday, January 31, 2010

Drinking tea when there's no way out

This post was written in December 2009, when I was spending a month staying at a Buddhist monastery near Sydney, Australia.

I’ve been reading a book of stories by the Buddhist monk Ajahn Brahm called Opening the Door of Your Heart (previously published as ‘Who ordered this truck-load of dung?’).

It’s a lovely book, full of short stories, some of them re-telling Buddhist fables and tales and others recollections from Ajahn Brahm’s life.  The chapters are all very short, and the whole book is alive with warmth and humour. I think it's well-suited to people who have an illness and might have trouble concentrating or reading.

I found one of the stories particularly moving and enlightening.  It's the story of a man who’d been in the British Army in World War 2 (and later met Ajahn Brahm). The man had been on patrol in the Burmese jungle when the scout from his patrol returned to tell the captain that somehow they’d stumbled into the middle of a large number of Japanese soldiers. They were surrounded, with no way to move out. The patrol expected to be ordered to advance, and even if none of them survived at least they might be able to kill some of the enemy. 

But instead, the captain told his men to stay where they were, sit down, and have a cup of tea. The man who told the story to Ajahn Brahm said that they all thought the captain had gone mad. But, they were in the army and they had to obey him.
“They all made what they thought was to be their last cup of tea.  Before they had finished drinking their tea, the scout came back and whispered to his captain. The captain asked for the men’s attention. ‘The enemy has moved,’ he announced. ‘There is now a way out. Pack your kit quickly, and quietly – let’s go!”
The man told Ajahn Brahm that he felt like he owed his life to his captain, and not just for saving him in Burma. 
“Several times in his life, it was as if he was surrounded by the enemy, completely outnumbered, with no way out and about to die.  He meant by ‘the enemy’ serious illness, horrendous difficulty and tragedy, in the middle of which there seemed no way out. Without the experience in Burma he would have tried to fight his way through the problem, and no doubt made it much worse. But instead...he simply sat down and made a cup of tea.”
After reading this story I put the book down and lay there for a while, just listening to the sounds of the Australian bush on a summer’s night – the crickets, and the rustling of the gum trees outside my caravan. In my mind I saw an image of me, surrounded by my enemies of fatigue, pain, despair, fear and depression.  I saw them all around, surrounding me in the dark night, lurking in the trees and bushes outside my caravan.

What was my inclination?  Was it to sit and have a cup of tea?  Or, was it to hurl myself headlong at these enemies – hoping to fight my way through and emerge at the other side, wounded but alive?

Of course, it was the latter.  But, for the first time in my life I could see that there was another option.  I didn’t have to throw myself on my enemies and wrestle them to the ground in an adrenalin-pumped fight to the death.  I could just sit, have a drink, and say, ‘who knows?...let’s wait.’ 

I started making a little meditation around this.  I allowed the difficult feelings to arise, and imagined myself sitting down, drinking a cup of tea, and shrugging my shoulders...just waiting.  This was a completely new way of relating to these feelings. Immediately I could feel the some of the huge responsibility I’d taken for all these ‘enemies’ slip away.  They were still there – but it seemed they weren't totally my fault, and totally my responsibility to fix. I saw that it wasn’t my job to destroy myself fighting them. I could be aware of them, without blaming myself so much for them being there.

Often people with an illness are encouraged not to 'play the victim.' We're encouraged instead to take responsibility for our situation, to heal our own bodies, to investigate why we have 'dis-ease.'  In itself, this isn’t a bad thing, but I wonder sometimes whether the pendulum has slipped a little too far one way and whether we are being urged to take on too much responsibility for what is happening to our bodies. Ajahn Brahm’s story made me realise I’ve taken on far too much responsibility for my illness. It has been a profound realisation, and one that I know I’ll be working with, and deepening, over the next weeks and months.   
 
One of the huts at Santi Forest Monastery


Sunday, October 18, 2009

Fishing without a hook

It took four years for me to be given a diagnosis of Chronic Fatigue Syndrome. This is a piece I wrote a few years ago describing what it felt like to live with an undiagnosed condition.


I cried a lot last week. I cried on the tram. At the checkout counter of the local supermarket. At the dentists. Until two years ago I’d never cried in front of another person, but now I regularly expose trams full of Melbourne commuters to my tears.

I can go for weeks without crying at all but last week my emotions were bubbling too close to the surface. The most I could do was to cover my face and try to hide my tears from the curious, grey-suited commuters sitting opposite me. I was crying with overwhelming feelings of sadness, frustration, anger and (worst of all), self pity. The other people on the tram were going to work. I was going to the doctor.

I feel ashamed writing this because you must be thinking that I have a terrible illness and that I’m struggling for my life. The problem is that I don’t know what I have- it’s an undiagnosed medical condition. Possibly an unusual type of chronic fatigue syndrome or a depressive mood disorder. Then again, maybe not. And when you don’t know what you’ve got, you don’t know where it’s leading you, and you don’t know when it will end.

Two years ago, I suddenly stopped sleeping. I was in America studying at a mid-Western university and had just been to a Martin Luther King Day service at the local Baptist church. That night I couldn’t sleep; my brain was agitated and in overdrive, thoughts ran screaming through my head. The next morning as I struggled to get to my classes I thought I must have had a bad reaction to some white wine I’d had to drink the night before.

Unfortunately this wasn’t the case and over the next six months I had debilitating insomnia. I would finish up most nights on the couch in my living room watching terrible American early morning programs in a desperate effort to get back to sleep.

I was so frustrated and confused about what was happening to me and resented friend’s suggestions that I should get counselling or just try to relax. “I am relaxed,” I would say through clenched teeth, “I just can’t sleep!”

I returned home to Australia and started to feel not only exhausted and lethargic but a strange heavy, foggy feeling inside my head. I find it hard to explain what this feels like but cast your mind back to the worst hang-over you’ve ever experienced. Now, on top of this, imagine that someone had wrapped two bricks inside a doona and stuffed them inside your head. The muscles around your eyes ache, your head is heavy and pounding and it hurts to keep your eyes open. Top this up with a dose of exhaustion and you’ve got a pretty good idea of what it feels like to live inside my body!

I expend most of my energy going to doctor and being put on round after round of anti-depressant medication. “But I’m not depressed,” I say “I’m just so tired and I can’t do anything.” “But you’re crying,” say the doctors, “you must be depressed.” The doctors argue that my depression causes fatigue and I argue the opposite- that my fatigue causes depression. They’re caring but patronising, and I long for someone to take me seriously. I want to scream at them “I’m not an idiot! I’m smart and motivated! You didn’t know me before I got sick- I was a ’somebody’ then!’

Friends and family who can work, or read or go for a hit of tennis tell me that I’ll be better soon, that one day this will be just a memory. They say, “You won’t sleep if you worry about it- just stop worrying.” Or, “what you need to do is to try and go to work, then you’ll be so exhausted you’ll sleep.” Walking along the beach with me one day my father looked out at some fisherman fishing off the jetty. “That’s what you need to do,” he said, “some fishing. It’d be really relaxing for you.” “But dad,” I protested, “I’m a vegetarian!” Unfazed, he replied, “that doesn’t matter, just fish without the hook.”

I go to alternative health practitioners who tell me I have a small problem and that I’ll be better in about five days if I take the herb they recommend. Many, many ‘five day’s and thousands of dollars later it becomes easy to be cynical about sudden cures. I have to try and find the balance between hoping that something will work but feeling crushed by disappointment when it doesn’t, and being so bitter and cynical about treatments that I don’t open myself up to trying them.

I try to stay positive and not doubt myself, but I long to meet someone else who experiences the physical symptoms that I do. I want to have a name for what I have so I can find out about other people who have it. I want to feel like I have a ‘real’ illness and that I’m not just making all of this up in some bizarre subconscious effort to get attention or to be able to drop out of life. 

It’s become easier to sink into depression over the last few months. I always thought of grief as something you feel when someone dies, but I’m not grieving the loss of another person, I’m in grief for the life I’ve lost and the vital energetic person I used to be. 

I used to be so active. I had so many plans for my life. I wanted every task finished ten minutes before I started it. In my 21st birthday speech my best friend joked that I would be reading a book, brushing my teeth, and practicing piano simultaneously in order to make maximum use of my time. To help me cope with hours of enforced rest and two years out of the work force I have to rethink this way of life. This is a difficult thing to do because these patterns of activity and achievement are part of my philosophy of life. I think that time spent relaxing is wasted time. It’s really difficult to see that, for me, spending time not achieving is an achievement in itself.

As hard as this process is, there are certainly rewards. I now think less and feel more. I’m less likely to make harsh judgements about other people and more likely to feel empathy for their problems. I try to ask people how they feel rather than telling them how I think they feel. I appreciate the beauty of the Fitzroy Oval against the backdrop of the city lights as I walk around the oval at sunset. I lie on the floor of my living room and do nothing but listen to the sounds of the birds outside and the voices of people walking by.

I treasure these moments of peace and acceptance because they are rare and hard won. The uncertainly and self-doubt of living with my un-named illness never really leaves me and for the first time in fifteen years I pray to the blurry, half-formed concept of God that I left behind with Sr Margaret-Mary in Year 8 religious education class. I pray for faith and acceptance. For humility and patience. But most of all I pray, in a very childish way, that God will make me better.
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