Peter Kennedy of the former Catholic Community in South Brisbane, St Mary’s in Exile, asked me to deliver a homily on my life experience and my belief that my ‘life’ is more than my ‘life situation.’ The transcript can be found on their website:
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This year I turned 30. I expected by age 30 I’d have a stimulating career, most likely be married and have kids, preferably 2. Instead I’ve led quite a different life and have missed out on these things so far. I have never had a regular paying job and I may never be strong enough to have children.
Since I was 10 I have lived with severe Fibromyalgia and Chronic Fatigue Syndrome otherwise known as Myalgic Encephalomyelitis or ME. I have not had a moment free of pain since at least the age of 12. An example of my pain levels is, it hurts to use an iphone, as the simple motion of my thumb triggers sharp pains right up my arm. This to me is normal.
When I was 13 I was a straight A student and excelled at 6 extra curricular activities, despite the pain. Doctors wrote my pain off as growing pains, and nobody else complained about their growing pains so I learnt to block it out and get on with life and tried hard not to complain. Finally at the end of the year I was 14 I was diagnosed.
Within a year I had to drop out of school and all my beloved extra curricular activities, including my main love, the flute. I had to say goodbye to my ambition to be a flautist and teacher. I grieved every loss deeply. I had long, beautiful hair, and I had to cut it off as it gave me headaches and pain. As much as I’d like to say I was not vain, the loss of my hair was a knock to my self-esteem.
The following year, aged 16, I spent entirely bedridden. Light, sound and smell drained my energy. I was in constant, excruciating pain and exhaustion of an indescribable magnitude. At times I couldn’t talk, couldn’t move. Lying in bed, I’d respond to Mum and Dad with a thumb up for yes or a thumb down for no, but even this movement was a huge painful effort. It hurt to breathe. It hurt to think.
Within this time, I experienced something I’ll never forget. Most of the day I would be anxious. But for moments on random days, perhaps for half an hour at a time, my symptoms would flare. In these moments, while fully aware of the pain, I could block it out and I had an overwhelming feeling of being held. Whether by God or any other name, I felt a greater power love and hold me as I said my mantra “I am okay…I am okay…” This I fully believed: if I were to live or die, I was indeed okay.
After a year, for some unknown reason I slowly improved from this level of illness. Mum or friends would take me outside the house in a wheelchair, I needed to be pushed as it was all I could do to sit up. But the wheelchair I saw as giving me freedom. I was no longer locked in my bedroom.
As soon as I was able I wrote in a journal, typing on my laptop while lying down, and I started writing poetry and drawing, expressing my emotions and observations of life. It was wonderful to finally be able to record my thoughts.
For two years I experienced vivid night terrors every time I slept. The dreams were realer than real, vibrant colours, with me at the centre. All my worst fears were reality. Many nights I woke the family with my screams, and poor Mum would get up and gently shake me awake and calm me down.
But again, amidst the horror and the torture that was my sleep time, not always but sometimes there was hope. In some dreams, in the distance there was unearthly, moving, uplifting music. Whenever it was there I concentrated on it, and while the horror of the dream continued, somehow I could block it out and feel a sense of awe, strength and calm.
After 2 years, the night terrors gradually left. Twelve years later, my dreams are still vivid and bright but most often have a positive feel to them, filled with wonder. And most amazingly, every so often I still dream with the intensely beautiful music, but now it surrounds me, uplifts me, and is here with me. I don’t have to search for it and block out horror: the fear is gone but the beauty remains.
When I was 17 I had a reaction to a medication and had a depressed psychosis that lasted a month. Then, aged 18 and 19 I experienced two major manic psychoses, lasting 9 months each.
The first 6 nights I didn’t sleep and hallucinated beautiful colours. The world was indescribably beautiful and I’d been let in on an amazing secret. Eventually I thought people were experimenting on me, torturing me. I saw signs in everything and thought TV, music, cinema, newspapers, magazines and books were talking to me. After the high of the initial few days, life became scarier than ever before. I had always been respected and articulate, and now everyone was saying I was ‘manic’ and the truths I knew were ‘delusions.’ After 18 months I finally came down to earth, and felt ashamed and deeply embarrassed. The next 6 months I was in shock and felt empty. I felt disturbed that my thoughts had not been my own. Having been bedridden, my thoughts were critical and were all I had left. Now my thoughts had been governed by something else. It was terrifying and I couldn’t get my head around it.
I still struggle, but with medication I have lived well with bipolar for 10 years. In that time I finished school one subject at a time, moved out of home into a sharehouse, and did a couple of subjects at uni, before again needing to pull out of study. In 2004 my book “Stranger In The Moving Chair” was published, to which I have had a wonderful response. Now physically I am still chronically ill and debilitated, but emotionally, mentally and spiritually I am in a good place and have come to terms with my lifestyle, am happy and truly love life.
Peter Kennedy gave me a copy of “The Power of Now” by Eckhart Tolle to listen to. Tolle’s lesson about ‘Life situation vs life’ reminds me of the typical greeting and a dilemma I face when answering it. My response to the question ‘How are you?’ has changed over the years. In my teens my intense grief and emotional pain was not visible and it was frustrating when people asked ‘How are you?’ and exclaimed ‘you look so well!’ I wondered how much they really wanted to hear of my intense invisible physical and emotional pain. Did they really want me to elaborate or were they just making polite conversation? People still say I look well and have a need for me to be well. But my dilemma in answering ‘How are you?’ has changed somewhat. I am still never well, so if I were honest I could say ‘I’m terrible’ and disappoint them that I am indeed not well and have them feel sorry for me. So if I were to say ‘I’m fine,’ it would be a lie – or would it? Now, emotionally and spiritually I am going really well. I’m happy, and the essential me is alive and well. But how do I say this, without making people think it must mean physically I am well too? So now there’s two parts to my answer if I’m to answer truthfully. To use Tolle’s terms, Id say my life situation sucks(!) but my life itself is blossoming!!!
Along the same lines, many people, both people with ME/CFS/FM and their supporters often think a cure or recovery is the only means of hope. Life is beyond cruel with this illness. There is no questioning that. To many, the thought of a long lifetime full of constant pain and disability is scary, perhaps even scarier than the thought of death.
But I believe pinning all hope on a cure or recovery is not necessarily healthy or realistic. To be happy in the now, you cannot pin all your hope on the future.
The way I look at it, is that you need to grieve each loss deeply – your abilities, your passions, your previous identity, your health etc etc etc But eventually there comes a stage of Acceptance. And, like the death of a loved one, the pain never fully goes away and will always stay with you in some form, but eventually you may come to terms with it and accept it. With chronic illness your physical pain may never fully go away and you may always be dealing with new and continual loss. But you may reach acceptance, and then your life may truly go on.
I found my hope this way. The hard truth is that there may not be a cure in my lifetime. My illness may alleviate somewhat but after 20 intense years its not highly likely to ever fully go away. But my hope is not lost. My life is not lost. I live in acceptance and live life in the full belief that my life is beyond my life situation. With that in mind, if I do recover or a cure is found, that will be an amazing bonus. But in the meantime, my happiness is not dependant on it.
Many believe illness equates to unhappiness. The average healthy person’s experience of illness is a cold or flu, which makes them feel awful, and in reaction makes them feel miserable. My current pain and symptoms make me feel considerably worse than a typical cold or flu every day. When you are sick for months then years on end, you need to adjust your lifestyle to accommodate for the illness. Once you come to accept life with illness, it is actually possible to still find contentment and happiness too. Its taken time but I love to laugh and smile and illness wont take that from me. Illness does not forever equal anguish.
To conclude I’d like to share with you a poem from my book. Friends and family ask me how they can help. Nowadays practical help like lifts to appointments or for outings, and the occasional meal when I’m in a rough patch is invaluable and much appreciated. Back when I was 16 I wrote this poem to express what helped me the most at that stage of my life,when I had been bedridden for a year and was still wheelchair bound. It still rings true today:
“The Best Support”
The best way to help
Is to listen
Advice seems to pour
Who insist they understand
But have never experienced it
Those who help
Are those who listen
Those who accept
There is no magic cure
Accept they cannot instantly
Make things happily ever after
The best support
Is not a quick fix
But a listening ear,