We may have suffered a stroke but   …   WE'RE STILL THE SAME PEOPLE

Some time after a friend had visited me in hospital I found that she had walked up several flights of stairs to reach the floor I was on.  Not because the lift was not working but because of fear.  She wanted to visit me but was afraid of what she might find.  She took the stairs to delay the inevitable; coming face to face with a friend who had had a stroke.

 

I appreciated her friendship all the more for her unfortunate experience but wished she could have come without going through such fear.  There were others who were not even able to come to the hospital let alone walk up the stairs because of that same fear.  Others came and chatted as they would have at any other time.  There was no need for many words to express concern.  Their presence gave the assurance of their care and support.

 

As with all serious illnesses people react differently:  some cope, others don't.  Stroke strikes fear in people and quite often they don't know how to approach or treat those of us who experienced it.  Lives are changed by stroke.  The life of the one affected and the lives of those closely associated with that person will never be quite the same again.  For the person with stroke support and encouragement are of the essence and a balance between allowing independence and over protection is vital.  For those who are not certain of how to approach and treat a person with stroke having an understanding of what it is like to live with stroke may make it easier.

 

We, people with stroke, have gone through an incredibly traumatic experience and have been left with deficiencies of varying severity.  More often than not things such as our confidence, self-esteem, self-image, emotions and even our personality may have been adversely affected.  We can also experience extreme physical and mental exhaustion which makes participation in any rehabilitation, other than for very shortest periods, difficult if not impossible.  Nevertheless we are still the same people as we have always been, people of value and worth who want to be accepted as such by those around us.

 

The damage caused to our brain as a result of the stroke may not be totally irreversible but with time there may be some recovery.  As we see improvements, no matter how small, we have hope which gives us courage to continue so in time we might be more like we were prior to our stroke.  We will never be the same because of our experience but with hope and support we have a far greater chance of getting on top of our disabilities.

 

The residual effects of stroke are not the same for all people but whatever they are they can be extremely difficult to cope with.  If you can imagine yourself in the following situations you will have some idea of what life is like for the person with stroke. - Not to be able to walk, move an arm or forget that it exists; to lose your speech and not be able to communicate; to have limbs that feel like dead weights and jerk about with involuntary movements; to lose your independence; to have no privacy, for example, to have to be lifted on and off a toilet and strapped on so you don't fall off; not to be able to walk away from some situations; no longer to be able to dress or feed yourself and wonder how you must look to others, to know that you are dribbling or dropping food and you can't do anything about it; to feel humiliated and degraded because of your disabilities; to feel guilt and pressure because you are no longer able to function in a society that places so much emphasis on your success by your contribution to that society; to be so embarrassed by your deficiencies that you find strategies to try and cover up; to have your emotions so much out of kilter that you don't have control over such things as laughter, tears and aggression, to meet someone that you have known for years and not recognize them; not to be able to remember the names of loved ones This list is in no way complete.  Any one of these things would be difficult to cope with.  The person with stroke usually has to try and live with many of them.

 

At times a stroke person is upset, frustrated, annoyed or amused by the behaviour or action of a carer, be that professional or other.  Such situations can arise because of lack of understanding or thoughtlessness and may be in no way deliberate.  On occasions for example, I have heard a carer say, 'Stop that crying, there is nothing to cry about'.  Having had a stroke there is a lot to cry about although often one doesn't know the reason for their tears.  A touch on the arm or shoulder can do more than words and certainly more than the above comment.  I often wonder why such things are said and tend to think it is because the person doesn't know how to handle the situation or they themselves are tired and frustrated.

 

Stoke and its associated problems are not pleasant; it is abhorrent.  If anyone is to offer help they need to realize that the person who has had the stroke is essentially the same as any other person.  It is very easy to fall into a 'them and us' situation and this can be very hurtful if you are constantly aware that you belong in the 'them' category.  We are individuals with our own personalities, interests and feelings and do not fit into neat little boxes ready to be rehabilitated according to some prescribed formula.  The person with stroke may be very happy to have your assistance but initially there will be those who may not welcome you with open arms; they may be embarrassed, they may feel the loss of dignity, they may have given up hope, they may be too tired to bother, they may be too frightened to try for fear of failure, they may be depressed.  But it is never too late to work on improving quality of life.  We need help from people who are not patronizing, who are committed, patient and tolerant; people who can perceive and understand our needs and show encouragement and love.  I suggest there is no hard and fast rule of how to approach and treat a person who has had a stroke, just as there isn't for anyone else.  Helen McIntosh