How we define ourself determines the quality of our life
Focusing on the pain of chronic illness, loss or trauma can blind us to our potential to live well and find meaning, whatever our circumstances.
I write from the perspective of someone who has had fibromyalgia, which is a chronic pain and chronic fatigue condition, for over 40 years. I have fibro; but I’m adamant that fibro does not have me!
Chronic fatigue syndrome and other similar conditions such as fibromyalgia are complex disorders which are often difficult to diagnose and treat. Their causes aren’t fully understood and symptoms vary between individuals, so what works for me may not work for somebody else, which makes it even more difficult. The main symptoms are debilitating fatigue and widespread pain, both of which can have a hefty impact on a person’s quality of life, day by day. About 2% of the population are thought to have chronic fatigue syndrome and about 4% are thought to have fibromyalgia.
These things have been round for a long, long time. In fact, many people think that Job in the Bible is actually describing what fibromyalgia feels like. But you may not know that there are many other well-known people who have, or are thought to have had, chronic fatigue syndrome, fibromyalgia, or other chronic pain conditions.
Florence Nightingale, who pioneered safe and effective nursing practice, spent the later years of her life confined to bed, so fatigued that she could only speak to one person at a time. Nobel Prize winning chemist and physicist, Marie Curie had chronic fatigue syndrome in her early years but she went on to achieve amazing things. Charles Darwin was another one that they think had some of these syndromes. Frida Kahlo, the famous Mexican painter has the most amazing colourful and dramatic paintings that portray the sorrow and pain she endured, but also a passionate flair for life and an appetite for life.
There are many singers, including Michael Crawford of The Phantom of the Opera fame, Cher, Sinead O’Connor, Flea from Red Hot Chilli Peppers, Stevie Nicks from Fleetwood Mac, and Anthony Field from the children’s band The Wiggles. Each of these people is amazing in their own way.
There are others sufferers from chronic pain conditions as the result of accidents and injuries, often in the line of their chosen careers. There’s singer and American Idol judge, Paula Abdul, actor George Clooney, Spiderman actor Toby Maguire – yes, sad but true, even superheroes hurt sometimes.
I’ve had fibromyalgia since I was 19, maybe longer. On a good day I wake up feeling like a herd of elephants in little pink tutus have danced a ballet all over my body. And on a bad day it’s like they’ve tapped danced all night in army boots. But life is good… I’ll share a little of what I have learnt through having fibro later, because I think that in all of these conditions there’s a hidden gem, there’s a pearl in the middle of the oyster, there’s always a gift that comes with pain
There are all sorts of pain that people carry
It may be from physical causes. It may be the result of living with mental illness. And then there’s the emotional and spiritual pain of loss and trauma. Many of these pains are deeply fatiguing and debilitating. You know, there are many hidden burdens and brokenness that people carry. We are not always aware of them in others and sometimes not even in oursleves.
But the good news is that pain and fatigue do not have define you. You are not your pain. You are not your fatigue. You are not your illness or your grief or any of the traumas you may have experienced in your life. It is possible to live life with dignity, courage and resilience and find deep meaning and purpose in your life that transcends any circumstances and limitations.
In the last week I have been struck by two stories that have come out of the Olympics. The first is Dame Evelyn Glennie, is a profoundly deaf Scottish drummer and bagpiper who lead 850 drummers in the Opening Ceremony, not everybody would have realised she was deaf.
She lost her hearing at the age of 11. But she says she hears in a different way to other people and does not consider herself handicapped or disabled in any way. She has adapted to be able to use her sight and to sense vibrations in order to hear the sound. She says she simply finds a way to work around the limitations and forgets about it. She just gets on with her life. She actually has said, in one of the articles I read by her, that it would be easier for her if she grew longer arms and bigger hands rather than regaining her hearing.
Dame Evelyn gives over 100 concerts a year with her drumming and bagpiping. One of the things I think is really cool is that she regularly takes her shoes off and plays barefoot to help her feel the music
The second person that caught my attention is Im Dong Hyun, a South Korean visually impaired archer. Unfortunately he did not make the individual finals of the archery competitions but he broke his own world record in the first round of competition.
His eyesight is extremely limited, yet I sat there watching him hit bullseye after bullseye. When he looks at the target he just sees a blur like a drops of colour in water. Im says he resents the fascination with his sight and refuses to be labelled as legally blind. He relies on the feel of the bow in his hands, the feel of the wind, muscle memory, and the technique he has perfected through years of practice. His attitude and his ability to remain calm under pressure are far more important than vision.
Neither of these people focuses on their disability. Their limitations are not what defines them. They’ve trained themselves to develop other attributes and concentrate on what they can do. They do it well to the best of their ability, and then some.
I’d like to share with you some of lessons I have learnt along the way
Sometimes I’ve been a slow learner, I must admit. I don’t hover above this condition. I feel it with all my body and all my soul and all my being.
I knew for a long, long time that something wasn’t right, but it took years to get a correct diagnosis. It was such a relief to have a name to it and know that something was really wrong because then I had something real to contend with.
I acknowledged its reality, and that reality was absolutely rotten, but I found fighting it was too exhausting and I needed my energy to live and I wanted to live well. I reckoned if I waited till I was and healthy to really live then I’d be wasting my life. I think the people who get most bitter are the ones who think there is going to be some magic answer and if it doesn’t happen they live the rest of their life bemoaning it.
But I kind of reckoned it was the same as if I waited till I was young blonde and slim with legs to my armpits. It just wasn’t going to happen! So I thought I may as well get on with it. I learnt to live within the boundaries, and I learnt to push them and when to stop pushing and rest and recuperate. Because acceptance is not giving up, it’s giving in, which is something quite different.
I got as much information as I could from reliable sources. There are millions of sites online that will tell you all sorts of ridiculous things and try to sell you something in the process. So I learnt to be and pick the ones I could really trust. I sorted some self-care strategies and I decided it would not define me. If the pain and fatigue wanted to stay in my life, they had to come along with me, not the other way round.
I recognised that despite my best efforts, sometimes this condition would knock me down, and that’s okay. It’s all right to fall flat on your face and it’s okay to lay there for a little while, but the important thing is to get up again. And really, all you have to do is get up one more time than you fall down. That’s all that is required.
I could easily focus on my unfulfilled potential, lost opportunities and shattered dreams and if I was a bagpiper I could probably play a pretty good lament about it. But basically it is a case of suck it up and get on with it. I accept what IS to make way for what CAN BE.
In my coaching work and my writing, I try to distil this experience that I’ve had to encourage other people to find their inner own power and live well
In fact, I’ve got clients that have spread out all around the world and they are doing amazing things that I, in my wildest dreams, couldn’t even imagine. But that’s their life and their dream, and I have my own journey.
I often think that trying to be strong makes us too rigid. We are more likely to break under pressure if we can’t give way. True strength for me involves flexibility and endurance - being able to bend under the load and spring back into shape again. You don’t have to be unafraid, whatever you’re facing - you just have to be able to access your courage. Building resilience increases your ability to weather life’s storms and that’s a lesson that sometimes takes a lifetime to learn.
It’s vital that you don’t let what you can’t do get in the way of what you can do, and doing it to the best of your ability and capacity. It’s a matter of focusing on what is good and opening up your heart to embrace life and all its possibilities.
You know, it’s likely most of us will face something difficult at some stage in our life, but there are so many reasons to keep on going
So – I’d like to leave you now with these closing thoughts:
Life is full of challenges and they’re not the same for each person. So acknowledge your pain and your fatigue, whatever its cause. Feel the feelings that come with it, and express them safely and fully and then move on. You don’t have to be a Pollyanna to be positive. Once I finally had a diagnosis, I can vividly remember saying to myself: ‘this really, really, really stinks – now what can I do to get on with my life?’
Overcome what you can by building healthy habits of body and mind. Then accept what you can’t change and push the limits, and push them a little bit more. Adapt how you do things and develop other capacities within yourself and find out what works for you. Don’t depend on somebody else’s journey, take your own.
Ignite the spark of hope within you and fan its flames to light your way. Put aside your feelings of fear and despair and celebrate life in all its beauty because there’s so much beauty to celebrate. Determine to find meaning. Make time in your life for moments of joy and wonder and open your heart to the things that really, really matter.
Don’t get bitter and twisted when you are hurting because that’s only going to make you hurt more. Dig deep and access your resources of resilience, strength and courage. Embrace all that is good about you and about your life and build on that.
And remember, most of all, to take off your shoes and go barefoot to feel the wonder of your own beautiful music!
© Marian Kerr, Marian Kerr Consulting t/a Contemplate Life Coaching, 2012. All Rights Reserved