When we find our abilities, independence and self-reliance diminished by the effects of a chronic condition, pain and/or disability, we look for assistance and methods to keep those impairments to a minimum. It can be however, due to the nature of the condition and its progression, that those options are very limited. When that happens, a different kind of rehabilitation may have to be found.
The traditional use and aims of rehabilitation in health care are reflected in a variety of definitions, depending on the model from which they originate:
The action of restoring someone to health or normal life through training and therapy after illness.
To reach and maintain optimal physical, sensory, intellectual, psychological and social functional levels.
To restore to dignity, the dignity on the individual level.
Rehabilitation in case of chronic illness or disability
In a chronic illness, those options are limited. Thus, the focus should be on maintaining dignity and developing optimal physical, sensory, intellectual, psychological and social functional levels within the context of your condition.
In this, most rehabilitation models and strategies deal very comprehensively with issues such as:
There exists a wide range of very effective, well-designed programmes that can help you in the above aims and objectives, and I would like to impress on you the necessity for you to do some research, consult your health practitioner and to commit to a rehabilitation programme that best meets your needs.
The strength of rehabilitation programmes lies in their pro-active approach, in their measured targets, their appeal for self-participation and in providing focus and direction, preventing you from getting stuck in questions, doubt and hopelessness.
HEART AND SOUL too offers a range of self-help programmes and tools that are part of its overall counselling.
It has been found that, notwithstanding the support and effectiveness of interventive rehabilitation programmes, what remains often neglected and ignored is the area of your emotional life.
The deep-reaching, fundamental and possibly devastating emotional effects of contracting and living with a chronic condition are still underestimated.
There are some psychological methods and interventions that can offer support in dealing with the psychological challenges related to living with the ongoing effects and limitations related to your condition, and again I would urge you to investigate the help that is available in this area.
But there is more.
The life of the soul
From all my years of working with patients and clients in a variety of settings, as well as from years of my own struggle with impaired ability and chronic pain due to lower spinal damage, I have learnt that there is no feeling of honour in living with a chronic condition.
Week by week, month by month and year after year we need equal, if not more courage, commitment and resilience than say, a high-performance athlete, an explorer who sets off across the dark waters to an unknown world or an astronaut stepping into the terrifying void of space.
Consider for example, the inner perseverance and tenacity it takes to experience, day after day, that what you want against what you can are two entirely different realities with a vast space between them. And although, after great effort, one can come to some acceptance, such acceptance does not take away the actual confrontation.
And what about the strength of will and resolve that is needed when daily, each simple chore, from taking a shower to folding up clothes or watering the garden, is a major task?
This takes an entirely different kind of inner resource.
As does living with the guilt of letting others down, feeling weak and not contributing to the household.
Furthermore, in this ordeal it is inevitable that the question “For what should I carry on” is shockingly encountered at least once in your life.
In all of this, your real struggle remains hidden because in truth, it is not a struggle of function, but a fundamental existential struggle taking place in your soul.
So what can ‘rehabilitation’ mean in this context? What is still possible?
As a whole human being, we experience our physical body, our eternal spiritual aspect and our soul that lies as a bridge between them and finds its expression in our emotional and mental life.
Wellness in the body helps the soul and spirit. Nourishment for the soul will enrich it and enliven the body. A troubled soul works out its illness through the body and in so doing renews itself. An ill body affects the degree to which the soul can express itself through activities, but also: a vibrant soul can radiate through a weak body and sustain it.
Considering this, I would like to suggest that although ‘there is no feeling of honour in living with a chronic illness’, you do have the possibility of carrying your burden with honour.
If you can accommodate the insight that in your illness there is a deeper dynamic at work, you may yet find a different kind of rehabilitation possible. With that potential in mind, I would like to present just 3 views that illustrate a different level of rehabilitation.
1. The masculine and the feminine
In using these terms here, I don’t refer to issues of gender, but to the quality inherent in each approach. We find other terminology used to indicate these qualities, such as Yin and Yang. Each approach has its scope and related abilities, and each approach therefore has its uses, its strengths and its limitations.
In medical terms the masculine approach forms part of proactive interventions: scans, scopes, tests, laboratory analyses, biopsies, drugs, surgery, radiation, chemo therapy, prosthetics, etc. It is a ‘doing’ approach, directed from the outside: ‘If something doesn’t work, change it’. The premise here is that illness, pain and handicap are primarily matters of the body and that healing therefore needs to take place in the material realm.
The feminine yin on the other hand encompasses listening, self- compassion, self-care, emotional support, empathy, non-invasive therapies such as acupuncture, cranio-sacral therapy, Bowen Technique, phytotherapy, reflexology (to name just a few), the incorporation of nature and the concept of personal transformation
This view acknowledges the possibility that the physical body and its symptoms are the outward expression of inner subconscious dynamics such as (youth) trauma, self-punishment/sabotage, abandonment, unresolved grief, loneliness, self-esteem issues and psychological exhaustion.
This feminine approach also acknowledges that our body harbours an innate self-healing wisdom, and the person is invited to support that force, to take responsibility from the inside and to participate in their process of becoming whole. This practice is, mostly for commercial reasons, much less represented in our contemporary medical environment. This practice is usually only considered once the methods offered by direct intervention are completely exhausted and the person is facing deep despair and hopelessness.
When we employ both disciplines and related modalities, we speak of integrated medicine.
2. Meaning and Values
As mentioned earlier, in the case of a fundamental, debilitating and often life-long chronic condition, one gets inevitably confronted with questions of meaning and purpose.
The questions: ‘Why this?’, ‘Why me?’ reflect a deep need for meaning. First of all, there can be the attempt to look for a cause in one’s own behaviour. ‘Was I a bad person?’ ‘Do I deserve this for some reason, or did I bring this upon myself?’
These questions, understandable as they are, can trap you in self-doubt and guilt, which makes it very difficult to find a way forward.
Second, it is possible that the very purpose of one’s existence gets questioned. After all, when we are healthy and functioning human beings we express who we are through our work, by caring for our family, in having fun, in being of service and through social participation. But what remains when your ability to express who you are comes to an end?
What remains when a future no longer holds a promise of the unexpected, of change, of adventure and of development, but is pretty much laid out as months and years of ‘making it through’?
We now have reached a point in our reflections where we need to consider the human being’s spiritual side. If we ignore this side, we would be ignoring one of our most valuable assets: the will to meaning. For it is to this will that we appeal when encountering traumatic and painful events. It is realized again and again that an appeal to continue life, to survive the most unfavourable conditions, can be made only when such survival appears to have meaning. That meaning is specific and personal, a meaning which can be realized by you alone. For we must never forget that each person is unique in the universe. (*)
The possibilities for giving your life meaning are found in realizing values.
We can give meaning to our life by realizing what can be called creative values: by contributing to the world, by creating and by achieving tasks – through our profession, by caring for our family, by sharing our knowledge and skills, etc.
Meaning is also found in realizing experiential values: by experiencing the Good, the True and the Beautiful, or by knowing one single human being in all their uniqueness. And to experience one human being as unique means to love them. The soulful experience of nature, art, music, compassion, love and inner peace also belongs to this realm.
But what if, for reasons of illness or handicap, you can no longer create in this world and your options for experience are severely limited?
Even then, you can still give your life meaning by the way in which you face your fate, your distress. Through this, you will be able to realise the values with which you can face your chronic suffering. These are called attitudinal values. By taking your unavoidable suffering upon yourself you may yet realize values.
This is possibly the greatest mystery and the greatest potential that lies within each one of us . . . to create meaning to our existence when it appears to be most missing.
The right kind of suffering – facing your fate without flinching – is the highest achievement that has been granted to a person.
Attitudinal values are actualized whenever you are faced with something unalterable, something imposed by destiny. From the manner in which you take these things upon yourself, assimilate the difficulties into your own psyche, there flows an incalculable multitude of value-potentialities. This means that, strange as it may sound, your life can be fulfilled not only in creating and enjoying, but also in suffering. The very essence of an attitudinal value is inherent in the manner in which you resign yourself to the inevitable.
Suffering and trouble belong to life as much as fate and death. None of these can be subtracted from life without destroying its meaning. To subtract trouble, death, fate and suffering from life would mean stripping life of its form and shape. Only under the hammer blows of fate, in the white heat of suffering, does life gain shape and form.
When we suffer, we remain psychically alive. In fact, we mature in suffering, we become refined because of it.
The destiny you suffer therefore has a twofold meaning: to be shaped where possible, and to be endured where necessary. Let us also remember that inactive or passive enduring still retains the immanent meaning of all suffering.
‘There is no predicament that we cannot ennoble either by doing or by enduring’ (Goethe).
We might say that even in enduring there is a kind of implicit doing, providing that the enduring is of the right kind, in the realization that what must be endured is a fated situation that cannot be altered or avoided.
If you cannot change your fate, you are forced to change yourself.
And so, next time when in your doubt and confusion you get overwhelmed by the question of meaning, please consider the possibility that the reason for you living with your condition may well be found in the very condition itself. Could it be that your purpose is to bear your fate with honour and dignity? Could it be that deeper meaning and purpose are hidden behind what you perceive to be a set-back or a hindrance, but which is in fact the gateway to a higher expression of yourself? (*)
3. Losing your force in this world
When struck by a chronic condition, pain and/or disability that severely compromise your ability to participate in the worldly aspects of life – working, traveling, moving, caring for, contributing, building, socialising – we can say that, in a manner of speaking, you have lost your force in this world, or your worldly power.
This is a turning point in your biography, and is often associated with the path of mythical figures. To live in this world, yet to not have the force to take part in it, introduces an initiation of some kind, one could say. The first step in an initiation is always the ending of something, the death of what was, the loss of identity. Only later are we are guided into a different realm of life, a realm that does not directly belong to this material world.
Losing your force in this world is the first step in the awakening and development of another force that belongs to a different world. The world of the soul, perhaps. Let us contemplate two images that illustrate this process.
The first image is that of the Norse god Odin who, in search of the powerful forces and knowledge of the cosmos, rendered himself powerless by hanging upside down from the sacred tree Yggdrasil where “ . . . he forbade any of the other gods to grant him the slightest aid, not even a sip of water. And he stared downward, and stared downward. . .” Here, that all-powerful Nordic god of war and death, the sky god and god of wisdom knows that he has to render himself powerless and surrender completely in order to receive the wisdom of the cosmos, in this case, the Runes. It is a most wonderful and soul-nurturing story, well worth a read.
Another, similar image can be found as the Hanged Man (Mayor Arcana). Here, very briefly, the main lesson of the Hanged Man is that we control by letting go - we win by surrendering. The figure depicted has made the ultimate surrender - to die on the cross of his own travails - yet he shines with the glory of divine understanding. He has sacrificed himself, yet he emerges the victor. The Hanged Man also tells us that we can move forward by standing still. By suspending time, we can have all the time in the world.
The Hanged Man reminds us that the best approach to a problem is not always the most obvious. When we most want to force our will on something, that is when we should release.
When we most want to have our own way, that is when we should step back. When we most want to act, that is when we should wait. The irony is that by making these contradictory moves, we find what we are looking for.
It is not necessary for us to have an affinity with mythology to have these images speak to us as representations of what lives as a dynamic in our own soul and in the lifestyle that is forced upon us due to the debilitating effects of a chronic illness or disability. We find some very helpful metaphors and insights here, because their story is also our story.
After all, is it not so that the effects of your condition at times make you feel powerless and as if ‘hanging upside down’? Is it not so that the part in you that protests most vehemently is the part that desires control, the part that wants you to have it your way?
In this, surrender is not what we usually consider it to be; giving up or showing defeat. Surrender here is the voluntary stepping back, putting yourself out of the way and extinguishing your inner conflict so that a space is created in which another impulse can enter. And that impulse can meet you from any, often a most unexpected corner.
We began by looking at some traditional ideas associated with rehabilitation. The aim of the reflections that followed was to widen that view and propose that rehabilitation can and needs to take place in some other areas of your being also. Rehabilitation then, I would like to suggest, becomes ‘renewal’ rather than restoring to a previous condition. The driving force behind this renewal can be found in hope. Hope, maybe not always in recovery and healing of the physical body, but always in the fact that you, as a being of soul and spirit are in truth making a transformation.
(*) Dr. Victor Frankl ‘Man’s search for Meaning’
‘The Doctor and the Soul’