Susie Mallett

Parent blog

Wednesday 20 October 2010

Life can be painful

First published on Conductor on Saturday, 20 September 2008

There was some pain in the stroke group yesterday and in the MS group today. There was pain in my shoulder all last week and pain in two of my colleagues backs. It seemed appropriate for me to repost this article all about pain.

Schau mir in die Augen, Kleines

The all seeing eyes, 15th September 2007, by Susie Mallett

Can I show you my pain?

Today I was working with a client who looked deeply into my eyes and asked “ Would you like to see my pain?”

What could I say?

I could have answered that I had been looking at him since the session started and seen the pain in his eyes all the time, and not just the physical pain, the emotional pain too. I didn’t say this but we did talk about his pain and what we could do to relieve it and to work with it.

This client had been in a lot of pain for a long time and the cause of it had been overlooked. He had conceived the pain from a broken hip, that happened in a fall, as knee pain and therefore the knee had been x-rayed several times but not the hip. So the actually injuring remained un detected for many months.

A dreadful mistake and a common experience

I have worked with many teenagers and young adults with cerebral palsy who have had hip operations and they have all told me that the pain often appears to be more severe in the knee than in the affected hip.

Now the physiotherapists and I are trying to get today’s client back on his feet and to do this we have to overcome the real and the imagined, the physical and the emotional pains.

When my client asked me if I would like to see his pain I told him that I knew he had pain and, above all, I knew the difficulties that he must be experiencing from such an extreme change occurring in his life. Having been an independent person, walking without aids and needing little help to lead an active life, he now needs to use a wheelchair and depends on others to help meet many of his needs.

We talked more and I told him that there was no need to show me his scars, which was what he meant by showing me his “pain”. We discussed how much pain he could bear and how he should tell me when we should we stop working because the pain was too much. He became calm and responsive and appeared almost a different person – he had started to communicate with me at last.

Talking about pain, not ignoring it

As a conductor I am confronted by pain every day but when I was a student this subject was never discussed in detail, it was not the subject of any lectures, it was not something talked about during practical training.

I have had to learn about this on the job, through my contact with clients and through discussion with another conductor...

Tarczay Klára had taught me at the Petö Institute, I still pick her brains when we meet and collect her wonderful tips, and it was she who told me as I finished my training - “ Keep an eye on your clients, look them in the eye, for there you will see almost everything you need to know”. How right she was, I have practised what she told me for many years and today as I worked I realised it is time to write about it.

The pain threshold

I can see when the pain threshold has been reached by looking in the eyes of my clients. These clients often wonder why I ask them to work on certain tasks with their eyes open, I explain and some smile knowingly at me while others immediately shut their eyes again, not wanting to reveal anything!

Stroke clients

In my stroke group it is so important that I see when this threshold has been reached. The clients will often push themselves too far and it is my job to put on the brakes. It makes the difference between achieving that which we are aiming at, gradually increasing the range of movement and having a painful inflammation in a joint. Here is an actual example, from practice in the stroke group.

The clients are on the plinths, on their backs, aiming to lift their clasped hands above their heads, bringing them down on to their foreheads and finally sliding them down behind their heads into their necks. This very complicated movement can be the cause of pain in many places: in the fingers, in the back of the unaffected hand (spastic fingers digging in), in wrist or elbow and in the most likely place the shoulder. Usually no one complains, no one refuses to do it, all those who are able attempt it do alone while the others wait for assistance.

I need to be in control here, I move up and down the row peering into each person’s eyes, from where I receive the information that I need so I know when to say stop or when to begin a different task.

Try it out, it works nearly every time, you can have even the toughest, most highly motivated person in the group who never gives up and never complains, but you will see his pain in his eyes. Such high motivation is good but experiencing unnecessary pain is not the aim of our conductive work, experiencing improved movement is, and we have to find the balance together with the client.

Some stroke clients experience a different kind of pain. A pain which is very difficult to describe so I will use the words of a client I have known for ten years and who, over the years, has explained to me in great detail many aspects of her disability and her rehabilitation.

She tells me about what happens as feeling begins to return to her fingers and how everything she touches with her fingers is experienced as pain – "It is only the hypersensitive peripheral nerves", she tells herself over and over again, until her sensory organs have understood the difference between a gentle touch on the skin and a painful prod. Each time that she feels pain in yet another part of her body that has been paralysed by the stroke she repeats the same process. It may take days or weeks before she perceives the “pain” as a feeling of touch similar to what she experiences over the rest of her body, but however long it takes eventually the pain is replaced by normal feelings.

Now she tells me that each time she experiences such pain she can smile even though it hurts, because she recognises it as the beginning of yet another step in her healing process.

We can assist this path to normal feeling by alternating warm and cold, rough and smooth applications to her hand.

Pain and spasticity

Spasticity shoots into a muscle, or more than one muscle, it is visible as arms fly up, a head jerks backwards, legs stretch out or the whole body folds up in a ball. But less visible is what is felt, as
this process is more often than not accompanied by pain.

Not just pain caused by a resulting fall or from knocking a bony elbow on the wall, there is pain in the contracting muscle, something similar I imagine to the pain that we all have experienced when getting cramp in a leg during the night or when playing sport.

It hurts, but our clients rarely tell us this.

I try to teach my clients how to anticipate this contraction and stop it before it begins. They practise breathing, they count, they learn how to move their bodies to minimise the pain.
They learn to react to their bodies and relax the muscles before the spasticity shoots in.
It is a long learning process, especially with adults. As conductors maybe we should also be considering how conscious we are of this problem when we work with children with cerebral palsy, are we doing enough to teach them how to achieve a life with less pain? Even to let them know that we recognise that they have pain is a step in the right direction, as I experienced with my client today.

Pain and multiple sclerosis

Again I write from the mouth of a client who describes the twitches and jerks, accompanied by pain that prevent the body coming to rest at night and prevent sleeping. He also describes having a pain in his body like a wide metal belt being tightened around his waist as the spasticity in his muscles increases. He talks about the pain as he slowly stretches his legs in order to stand up and then the increased pain as they suddenly jack-knife back to the bent starting position.

He learns in the conductive group through breathing exercises to relax the muscles around his waist and therefore reduce the pain, he learns actively to stretch his legs only to the point just before spasticity shoots in, he learns to actively bend and stretch his legs to reduce the jerks and twitches, and the pain, and therefore allow his body to rest.

This client has also learnt to talk about his pain, to describe it and to work out how to minimise it, but many clients do not say a word and this is when I need to recognise it and be prepared to discuss it with them.

People with multiple sclerosis are liable to push themselves too far, they find it hard to recognise their own limits. It is very important for these clients to learn that even though today they may feel fit to conquer the world, tomorrow is another day and they then may regret having exerted themselves too much.

Through a conductive lifestyle they can learn where their limits are, they can get to know their bodies well enough to say "If I do this today I will feel like this tomorrow”. They learn to decide for themselves how much exhaustion and how much pain they are willing to have tomorrow in order to do something today. They learn how much exhaustion or pain their body can endure without making their symptoms worse.

As a conductor I must know my clients and their symptoms and through our programme show them how they can learn this too. I need to know whether we should work with weights on the plinth today and still be able to move the arms tomorrow. Tomorrow’s pain I can’t see in the eyes of my clients, it isn’t there yet, but I can see the tiredness or the exhaustion.

Personal solutions

My clients learn their own methods to solve their problems and reduce the pain. One client strokes her upper arm and talks quietly to it, another stares at his hand and talks sternly to it. They all learn which tasks to do and which not to do and I learn when to put the brakes on and I continue to look into their eyes while they learn to look back into mine.

Dealing with pain and stretching its boundaries is a very difficult aspect of my work and it is one which rarely gets discussed. How much pain can I expect a client to experience how much is an individual willing to experience. Each client is different, each client’s body reacts differently on reaching and crossing the pain threshold. Conductive upbringing and lifestyling is not just about exercising, but the tasks are part of it and sometimes they hurt, just as walking or putting on a jacket or holding something in a paralysed hand can also hurt. As a conductor I must recognise when enough is enough or when to push on just a bit further. I must know when pushing on will do good and when it will do harm. Not only must I know these things I must know how to teach my client to recognise them too.

Yes, we should reach that border and go slightly beyond it to stretch a muscle a little, to achieve a bit more movement, but for clients to have so much pain that I can see it in their eyes, no that is definately not what my work is about.

Through conductive living clients can learn how to build up their stamina and strength, they learn to become more active or to increase their range of movements, all without experiencing unnecessary pain. We can use the rhythm of the movement, the direction of the movement and the speed of the movement all in controlling pain. We can speak and count and improve breathing techniques, we can learn about all aspects of the body and the influences that the whole of the daily routine has on it, including the influence of the weather!

The "pain of tomorrow" I can anticipate only through experience and in the group we can build up stamina and strength and learn the movements needed to prevent it being there at all.

No pain, no gain!

My german clients often say to me while we are working that nothing can be achieved without some measure of pain, the slang phrase they use "Ka Schmerz, bringt nichts" translates well into English as "no pain, no gain!"

Together we learn to discover the limits and achieve the balance between the two, between the pain and the gain.


Tarczay Istvánné- Vezetö : Felnött Nevelési Egység , Head Conductor, Adults Department, Petö Institute.

Casablanca- Dirk Bogart and Ingrid Bergmann
In the German version the last sentence Rick says to Ilsa, “Here’s looking at you, kid”, is translated as “Schau mir in die Augen, Kleines” , (“Look me in the eyes, little one”).


Laszlo said...

Dear Susie,
I have just read a paper on lived body experience. In it there is a part which deals with the experience of pain in a group of osteopathic patient. It provides some evidence to suggest that the people in pain view their pain as impersonal, yet, at the same time, they recognise the deeply personal influences pain has on their lifes. They seem to demonstrate an adherence to a mind-body dualism in their behaviors and their accounts. The paper is by Robert Shaw, the title is "Towards a sociology of lived-body experience" in The Journal of Contemporary Health, Issue 6/ Autumn 1997. I enjoyed reading it just as I did your post about pain because as you mentioned it correctly we never had such conversation about clients' possible feelings during our training at the Peto Institute. If you were lucky or interested you could have personal discussions with teachers, by for example Tarczai Istvanne but pscychology lecture times were never used to learn about such things.

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