The Aword

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Step 5: Coming to Terms with Illness

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Joyce Dace-Lombard wrote:

"Once upon a time has fallen down; been shattered and ?all the king's horses and all the king's men' can't put the old me together again."

However, she went on to write:

"It's in the letting go of pain
that wind borne seeds are strewn
And stronger roots are then sent down
Where once there was a ruin."

Yes, chronic illness means loss of so many things: from financial security to self-esteem, but it is vital that we do not become defined by our illness and by what we can't do.

Acceptance is not the same as giving up. Giving up is to turn your face to the wall, broken, having lost the battle you choose to lose the war. You surrender control of your body to the illness.

Acceptance, on the other hand, is making the best of a bad deal. It's a bit like playing a card game. The majority of card games such as whist are not won or lost on luck or lack of it, but on skill or bad judgement. So it is with the ongoing war against our illness.

However bad a hand we have been dealt, we can, with skill, still win. Living constructively, with a positive attitude, we can have a good life DESPITE our illness.

Carl Jung wrote:

"We cannot change anything unless we accept it."

As I said earlier in the article, it is a matter, perhaps, of accepting the need to continue the fight. This isn't just a matter of semantics, but for what it's worth, here's a thought about the meaning of the word "accept": according to Roget's Thesaurus, it can mean to admit, to believe, to acquiesce, to undertake, to receive, to approve.

Many of those rather different aspects of this simple word are inappropriate for our needs: I hardly think any of us would like to ?acquiesce' in or ?approve' of or to ?receive', our pain and illness! I suppose to ?admit' or ?believe' is nearer the mark, but my own view is that the best meaning of the word ?accept' is ?undertake'.

Looking closer at this word, ?undertake' I see that it means to ?engage in', ?take up', go in for', ?venture on' or ?tackle'. Now I think we are getting nearer the crux of the matter.

My own, purely personal view, is that I undertake to carry on fighting against my illness; in doing so, I have had to accept its presence, but I continue to challenge its hold on my way of life and to strive to gain ground on it rather than allowing it to get a stranglehold on me and my family (because, make no mistake, as I discuss further on in this article) it certainly attacks not only me, directly, but also those around me, even if indirectly).

One problem that often arises is that well-meaning people (and sometimes just ourselves) think that reminding us of the misfortunes of others may help to keep our perspectives on our own suffering. However, this does not always work!

Dr. Anna Kaiser Sterns, who has written a great deal about suffering, wrote:

"In life it's almost always true that things could have been worse; unfortunately, the knowledge of this reality rarely diminishes one's pain...We minimise another's loss when reminding him or her that others suffer too."

Bernie Siegel raises another important point in his book "Living, Loving and Healing."

"Share your feelings honestly...Don't put a fixed grin on your face and deny what you are going through and confuse your body. That doesn't constitute positive thinking or true peace of mind."

A rather eastern way of looking at it was expressed by William Saroyan in "The Human Comedy":

"True good health is the ability to do without it."

In other words, we have somehow to learn to live well DESPITE our illness and we can't do that until we have accepted its existence and taken control over the influence it exerts on our quality of life.

Here are a couple of (hopefully inspirational) ideas from other people:

Gretal Erlich wrote in "The Solace of Open Spaces":

"The toughness I was learning was not martyred doggedness, a dumb heroism, but the art of accommodation."

Dr. Goodling from Duke University in America said:

"It's so important for people who are hurting to know that the story hasn't been finished. Things are terrible now, but there's more to the story."

STAY AWAY FROM SELF-PITY:

Bob Monkhouse, the comedian, wrote:

"Self-pity is as habit-forming, corrosive to the spirit and delusory as any narcotic...you have to concentrate on its absurdity and mock it out of your mind."

Self-pity can destroy you far more surely than the physical illness you suffer from.

DETACH THE FEELING OF PAIN FROM YOUR FEELINGS ABOUT IT

Watch out for using emotive terms to describe your pain: "unbearable" "torture" "dreadful": try to use just descriptive terms such as "burning" "sharp" etc.

This will help you to separate the sensation of pain from your emotional reaction, and enable you to detach yourself a little from it.

Pain evokes a very atavistic (basic, primitive) emotion: acute pain was designed to that: to cause fear and make you remove yourself from the cause of the pain.

Chronic pain isn't useful in that respect, so you need to learn to ignore the fear, anger, anxiety etc. that you may feel and recognise, using your thinking mind, that these are not helpful emotions.

You don't need them so it is best to learn to ignore them. Labeling the pain as "just another sensation" alongside sensations such as hot, cold, hard, soft, light, dark, loud etc. can be a helpful strategy.

Of course, there may be times when the severity of the pain overtakes your ability to think at all: in those times, all you can do is remember that "this too will pass".

If you do get down with the unending pain, then don't beat yourself up about it and feel you are a failure: even when you have learnt to cope pretty well most of the time, it is pretty much inevitable that some days will be "down days": just ride out the storm and it will pass.

LETTING GO OF THE ANGER:

If you have developed arachnoiditis after a medical procedure, you may well be feeling anger, bitterness and betrayal. This will have been made worse if your doctors have denied the cause of your condition, or even tried to deny you have a physical problem.

Just bear in mind the Chinese saying:

Getting angry with someone is like picking up a red-hot piece of coal to throw at him: who gets hurt first?

Holding onto vitriol will hurt you and your family. Let it go!

ACCEPT RESPONSIBILITY:

Bernie Siegel, advising doctors, wrote:

"What you will find, of course, is that when you give patients the responsibility for their disease, they begin to change in many small ways. They will start to confront the disease, whereas before they may have used you, manipulated you, worn you out, let you make all the decisions, and do all the work. If you're not doing it anymore, they will have to change.

Now they may get angry in the beginning. But ultimately, I believe, they will thank you.

Understand that if you can listen to the people with the affliction you will be helping.

So learn how to listen- not manipulate, not control, not do- and they will have to make decisions and do things that will make your job easier."

Whilst this passage does seem somewhat patronising in its tone, it does contain some kernels of truth:

Patients need to take some control, and doctors need to learn to relinquish it.

It is a matter of working together. Patients cannot expect the doctor to just sort every problem out as if by magic.

Doctors must realise that patients nowadays tend to have access to much more information than they used to and it is incumbent on doctors to utilise that information or advise on why it should be discarded (but only after checking it out rather than discarding it out of hand, sight unseen, on the basis of its source, such as the Internet, being perceived as unreliable.)

FROM SUFFERER TO SURVIVOR:

If you can move on from going to other people and saying "decide what to do for me" to "this is the way I aim to help myself", then you will win back your self-respect and the respect of those around you.

Focus on your abilities and think about the bumblebee: for many years, it was thought that in aerodynamic terms, it was impossible for it to fly; yet fly it did.

Scientists looked closer and found they could learn a lot from the humble bumble.

Years ago, I met a wonderful lady in her seventies, who had had severe rheumatoid arthritis for most of her life: including throughout her married life and during the time her 6 children grew up.

They visited her often and both they and her husband clearly held her in the greatest affection and respect. Marion managed to keep cheerful despite constant pain and major disability. I once asked her how she managed to keep going. She replied:

"I never thought of it as an illness, just an inconvenience."

LOOK BEYOND YOUR PAIN...there is life out there!