Those who are or have been seriously unwell sometimes discover the world does not stop for their illness. It is part of the process, serious illness slows the body. In some cases it is so restrictive even walking across a room seems to be an ascent upon Mount Everest. You ask yourself ‘How will return to the summit of health?’ The answer is evasive but the love of life makes us determined to continue, and although we know it will be difficult we stay with the climb. We must realise ones external environment is in its normal and constant progression and, ones physical restrictions make you feel as if the world is leaving you behind.
Demons and imps enter the mind and play a game called fear. You see this association with restrictions, slowing down, disability is a reminder of the reality that life has only one certain destination. The demons play their game, the imps undermine your confidence. In a way, these episodes are more fearful than the disease itself. Imagine the isolation in this way. Family, friends and records of your life are on a platform and, the train has left the station, you are the only passenger on a train taking you into the unknown.
I’m sure everyone who has suffered a life threatening disease can relate to the sentiments in the first two chapters. Sadly some will feel unable to resolve the situation and the fear overwhelms the objective to return to health, by giving up, they allow the disease to take its course. I understand, why they do this. Although there is a simple way to send the imps and demons back into to darkness where they belong. The way, is not to resist and fight, the way is to sit back, calm down and relax within the isolation. Take time to rest, take time to do as little as possible, take time to focus upon the illness and situation you have found yourself to be within. Not to analyse it, do not work out when or why. There is little point to this, there is every point to bringing peace and calm to yourself, your environment and those within it.
The isolation is to be taken advantage of. Those who are around you need to understand where you are ‘at’. If they do not understand your true feelings, how can they help you in the way you would like them to? It becomes frustrating for a patient who desires to be in silence to reflect upon life around him, situations enjoyed and situations which all of a sudden no longer have the same effect and whilst they are silently thinking, those who surround him, ask ‘Are you alright?’ or ‘Is there anything I can do?’ I suspect they see you from their perspective and having no understanding of the way you feel, formulate incorrect assumptions of why you are just ‘silent’ and reflecting! Inevitably ‘tensions’ set the atmosphere and this can cause difficult moments. The situation can be easily dealt with by learning to talk about ones feelings with clarity and truth.
The strange paradox is illness teaches us potent life lessons. I think illness slows the patient down to enforce a state of rest, which will help him to recovery. I feel illness needs to be understood on many levels for example. When the demons and imps appear it is because the world is moving faster than the patient can cope with and if he attempts to catch up, stay with, hold onto what was once his normal ability or pace of life he will become frustrated and feel helpless. From my observations I feel those around him believe the way to help is to keep the environment and way of life the same as it was before the illness became manifest. It is not the same, many things are different. When the patient is allowed his own space and time without demands or fuss he will be in a better position to become well again. When those who care for him understand if he sees them living their lives in their ‘normal’ way he will not feel a burden to them. In other words careful a subtle adjustments to the routines, habits and timetables of those involved in the illness is how a sense of normality can be maintained. Once major changes to routines occur then the separation of the patient and carers becomes more evident. This ‘difference’ enforces the seriousness of the illness. I am not writing ignore it, or wash over it, I am indicating the possibility that carefully thought through and subtle changes to routines are better than major adjustments. In truth there are few of us who like major changes to our life pattern.
One life lesson of serious illness is communication. The lesson is the carer must listen to the patients desire, read the word again ‘desire’. If it is his desire to be allowed to sit and be silent. If it his desire to talk and relax. If it is his desire to be out with a group of friends or return to work. Allow him to know what is best for him. In my case my family and friends allowed me to do as I wished, allowed me to live my life in my way. It was of course necessary in the last months before my transplant for Carol to become very determined to make me eat so my body weight would increase and this was possibly one of the most difficult moments of the illness. It was important for my family to be with me and support me during the most difficult of times. They understood my desires, fears and the situation because I spoke to them about the situation (Carol of cause was with me during the consultations so she had an in depth understanding of the physiological aspects of my illness and treatment) and this is the lesson. Its fine to be brave, to show no fear and show how strong you can be. It is more intelligent to allow others to understand how you feel and allow others to listen to and accept your desires.
How much easier would life be if we were all open and glass clear with regard to our desires, fears, needs, expectations and objectives? Far form being restrictive this way of conducting ones life would be liberating.
Illness is a life lesson.
Live Life Well
More thoughts about illness and how to survive it can be found in my book ‘Second Chance’ available on Kindle (click on the link below) and from the 22nd of July it will be available on the Amazon Book platform.