A letter on the road to recovery

I hope that you are coming to terms with what has happened and that your recovery is progressing. I am very familiar with the issues following such a condition as I suffered a brain haemorrhage in November 2001.  I thought that passing on some of the things that I have learned about recovery and rehabilitation following such a condition may be helpful to you. I am sure that, had something similar been available to me four or five years ago, I would have found it helpful.  I am aware that everyone’s experience is different. I am able to describe only my experiences, which may be very different to yours. If this tome isn’t helpful, just burn it!  First a few words about me and what happened. I was (and am again) a lecturer in Information Systems. I entered the academic life some ten years ago now following a career of a couple of decades in the ‘real’ world.  I was well regarded in the academic world for my organisational and managerial skills that, whilst being nothing special in the ‘real’ world were, shall we say, unusual in the academic sphere.  In November 2001 I was digging up the last of my potato crop when I felt something ‘give’ in my head and knew something was very wrong. I made it back to the kitchen and there collapsed on the floor. I am told that I had had a sub-arachnoid brain haemorrhage and was rushed to hospital, deeply unconscious. I then spent some six weeks unconscious due not only to the initial bleed but mostly due to subsequent MRSA and other infections.  When I did regain consciousness I spent some more time in intensive care, followed by some weeks in a high dependency ward and then some months in a rehabilitation unit. It was on the rehabilitation ward that I relearned to walk and started to relearn other life skills such as how to remember things and organise and orientate myself. Finding my own way back to my bed on occasion was a start. Bowel and bladder control were positive bonuses!  Following release from hospital, even after some months, I was still relearning things that I had previously taken for granted.  I still remember with a mixture of amusement and horror various things that happened during my recuperation: - not being able to find my way back to where I had come from after going to the toilet in a building with which I wasn’t familiar and having to wait until someone noticed I’d been gone a long time and came to find me
  •  falling from my bicycle onto a concrete floor so hard and so fast before I realised that I would have to relearn to ride it
  •  losing my wallet (and key ring and diary and, and, and . . . .) so many times that the credit card people were beginning to despair at having to cancel all the cards – again
  •  not being able to find my own office (where I had worked for some five years or so) when first beginning to return to work, some twelve months after falling ill
  • it being very bluntly pointed out to me that my disinhibited behaviour was not easy to live with
  • being fiercely defensive of my ‘right’ to independence and the right to make stupid decisions and do things very badly, rather than have someone else tell me how to do things, or to do them for me
  • going missing for five hours when I’d gone for ‘a short walk’ to get some fresh air. I did come home eventually, under my own steam, before the police found me
There are doubtless many other things that would make wry reading, but I suspect that you have the flavour already.  My recovery has been truly miraculous, so far, and I have learned some things from which I feel you may take some hope. The list is by no means exhaustive but may contain some surprises!

Timescale of recovery

The timescale of recovery from brain injury is very, very long when compared to broken bones, cuts, bruises, sprains and the like. It is measured in months and years rather than in days and weeks.  I was discharged from hospital some five months after I was first ill. It took a further eighteen months for me to return to work full time and it was a further full twelve months after that that I was good enough at my job again not to be sacked for incompetence.  It was some four years after I was first ill that I felt as though I could do my job again and feel that I was good at it.  It was a full six years after I was first ill that I was finally discharged from the care of the NHS and no longer needed a twelve monthly check-up with the rehab people.  I have talked at length with others who have suffered similar conditions and they have all had a similar opinion – one still reporting improvements some years after his injury.  

The nature of recovery

The brain is a remarkable organ. It seems to be able to reconfigure itself to enable things to be relearned when the original ability or memory has been lost. Unlike cuts and breaks in bones which heal the original damage, the brain seems to heal by some other part of itself learning to do what the damaged part no longer can.  Healing and recovery thus becomes an active process, rather than just sitting around and waiting for things to get better under their own steam. Pushing the boundaries and relearning seems to be a good strategy. Albeit a scary one for people who are close to you.  

Attitude

From my own experience (and that reported to me by others) the attitude of mind most likely to lead to recovery\recuperation is a bloody-minded, determined and positive one. By this I mean an approach where you celebrate what you can do and look for improvements in this to become better. Perhaps not as you were before you were ill but certainly better than you were more recently afterwards.  In time, this leads to being aware of being able to do things that you previously could not. I now start each day with a big smile on my face as I can now put on my underpants without having to hang on to something to keep my balance whilst I stand on one leg to put them on.  

Relationships with others

Being bloody-minded and fiercely defensive about one’s independence can seem to be very hurtful for those who are close to you and want to help you. Many people have said that they have had to re-establish their closest relationships. Some never do. Very subtle changes in personality and behaviour can have a significant impact on relationships that were well established and comfortable before the illness.   The damage to my own brain was to the frontal lobes, one sign of which is behaviour that is termed as ‘disinhibited’. This can lead to very direct ways of dealing with people that most find uncomfortable. Recognising that they feel like this is a big step on the way to re-establishing sensible relationships with the world. 

Fatigue

I was amazed at this unexpected aspect of brain injury! For a full twelve months after my illness, it was a remarkable day if I was out of bed before noon and still awake after nine pm. During the hours I was awake I don’t think I was really very good company as I seemed so dopey and tired. This simply improved over time, independent of attitude, treatment or anything. Mind you, I still do get tired relatively easily and when I do my balance goes to pot too.  

Doing things differently

If you can bring yourself to accept that you are not the person you were before you were ill, I feel that it becomes easier to accept that it may be necessary to do things differently. Perhaps in ways that you previously would have thought were ‘cheat’ ways, or ways in which lesser people did things.  For me this has meant becoming completely reliant upon (personal) systems (a diary, a to-do list, MS Outlook reminders, support of friends, colleagues and loved ones) that, from an external perspective, gives me the appearance of being organised. In the past I am (fairly) sure that I would not have needed to be so reliant upon these things to appear organised. The bottom line is that now I am. I am so far down the line now that I actually celebrate being able to appear organised rather than being cheesed off about the dependency upon things that I was have previously eschewed. I am sure that the outside world doesn’t need to know how you appear organised, simply that you do!  

Dependency on medication

For many months I had to take anti-convulsant medication and other medication more than once per day. This was the first time in my life that I’d had to take any medication daily. I had not realised how much this irritated me and got me down, particularly as I had difficulty remembering to take them, until I was fortunate enough to be able to stop taking them all. I suspect that had I still been required to take them it would be something that would be unavoidable. If something is unavoidable (such as traffic queues, loutish drivers, taxes, grass growing, cars getting dirty, petrol prices rising, queues at the check-out at Tesco, death and many, many more things), what is the point in becoming angry or depressed about them. No matter how excited you become, they are not going to change so – so why bother? It’s only you who will suffer the anxiety, anger or depression.  I understand that this is a rational reason to adopt an approach that may, at first, seem irrational and unattainable but, believe me, it works - if you can do it.  

Self-esteem

When you are completely reliant upon others to function at anything more than a very basic level, it can seem as though you have become a worthless member of society. All the things that you used to contribute, you no longer can. The people you used to help and support get along without you. Your roles have been absorbed by others and you seem to have little purpose. This is because people to whom you had been close have had to become used to doing without you. And they have.  You may find this difficult to live with but, if you stick at it, there is definitely a value to your existence. It may be a different value, but value there is.  If you doubt this, select something (anything) that you can still do and do it! If this is a giving and\or sharing thing, so much the better. You can indeed make a difference. To yourself and to others. Even if this is simply providing those whose gift is to care, with a focus for their care, it is still a valid purpose. I have (unintentionally I have to say) found it very rewarding to share my experience(s) of this very thing with others who may be experiencing similar feelings.  When you value your existence, you take pride in yourself. Make an effort to look good. Dress well, note the detail of your appearance, have a good hair cut, get fit and slimmer. It is so easy NOT to make the effort and to cease to notice these things. Others will notice and will make (hopefully incorrect) judgements that will merely support your own lack of self esteem. It is you who can change this. Do it!  

Fear

Should whatever it is that has been responsible for your need to recover have been a serious illness or accident, you are a very fortunate person to still be here. Not only that, but you have no more cause to fear anything.  The worst possible thing(s) that you could imagine happening to you have happened already. And you are still here and functioning. If the worst possible this that could happen has – and it is now ok – what have you to be afraid of anymore? Nothing!  If you are like me, I was always afraid – perhaps unconsciously but still afraid, of what might happen. When that fear is removed – because you know that even if it does happen (which it has already), life is ok – life has an easy, joyful feel to it. Priorities become honest and you are not afraid of tackling ANYTHING. So you can. So you do! Liberating.  

Hope

When talking to health care professionals about such things as whether complete recovery is possible, when (or even if) you will be able to do something or other again it always seems as though they are cagey. This is because they know the statistics but they also know that they are only statistics so, for you, an individual, they cannot say categorically one way or the other and so cannot answer your (or your loved ones’) questions directly.  This can seem quite negative and may seem as though the health care people are more concerned about avoiding building false hope than they are about helping you (and\or your loved ones) adopt the positive approach to your recovery that comes from having hope.  I make no judgement on this. My ex-wife’s view is that having hope is as important as anything. Sometimes it’s the only thing you have. This hope has to come from you (and your loved ones). The health care people may well have hope. They also have a much broader experience than most of what most often happens, hope or no hope. Never lose hope yourself. If it is indeed the only thing that you have, if you lose it, you have nothing.  I do hope that this tome does not come across as sanctimonious and preachy.  It is certainly not intended to be so.
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