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 Helen held a senior position with the Education Department when she suffered a stroke in her early 50s. After a long time in hospital, she has managed to regain some of her independence and has built a 'new life' for herself.
What happened on the day of your stroke?
The night before I had a severe headache, which I assumed was a migraine, but the next morning I was relatively okay. So I went to work, spent a couple hours in the office and then went to a function. I suddenly felt very peculiar and I knew something was radically wrong.
I felt embarrassed and hoped whatever was happening to me would go away. I can only describe it as feeling as if it were life threatening. I felt as if my life was draining away. There wasn't any pain; I didn't feel sick, but I became aware that if I didn't hold onto the table I was going to fall off the chair.
Subsequently, I realised that I was paralysed down the left side. It was a most unusual and terrifying experience. I can only explain it as if it were all my life's energy, the life-force in me, draining away.
That was the most frightening experience of my life. I remember in the ambulance, the ambulance officer said they would just pop some oxygen on as a precaution. I was thinking, 'A precaution against what?' Although I couldn't move down my left side, I thought surely I was okay. I mean, I just didn't understand what had happened to me. It came on very suddenly, without warning. Up until that time, I didn't have anything amiss.
What were the initial effects of the stroke?
Almost immediately, the left side of my body became paralysed. I guess that was the most significant thing, in that I didn't lose speech or consciousness or anything like that, but the paralysis was obvious. It was later that I realised other things had been affected also, but some of those didn't reveal themselves until I went home after seven and a half month - although it was a little bit evident in the hospital.
I had slight dysphasia - I had difficulty getting words out. I would know what I wanted to say, but I just couldn't get them out. The concentration and reading difficulties didn't present themselves until later. Writing did, because I was left-handed and my left side was totally affected; I had no feeling whatsoever all the time.
I had 'extreme tone', where everything went rigid. The first time the physiotherapist came in, she tried to bend my leg and couldn't. She virtually sat on the leg to try to get it to bend. Another problem was muscle contraction and involuntary movement. The leg would be bouncing up and down. Limbs would go flying around and I would have little control.
When I look back, perhaps I was a little high in the first few days. I seemed very happy and quite relaxed but, at the same time, I sensed I really wasn't in control. It wasn't me. I soon found my emotions were close to the surface. One of the problems with stroke is not being able to control your emotions; not necessarily being unhappy or anything, you just so often find yourself in tears. You can be talking to somebody and the next thing you are crying. That can be embarrassing. It went on for years. It still happens, but not as badly as it did in those early times. I only need a small thing to make me a bit anxious, or a little excitement or even just recounting something; the tears still well up and the voice cracks and I think, 'Oh, here we go again'.
Fortunately, family and friends know about this. I was telling my mother and sister something recently, and I got through it and my sister said, 'Do you realise you told us that and you didn't cry once?' I thought, 'Well, after all this time I am still seeing improvement, which is good'.
How are you today?
It's amazing where I've come from after being paralysed down my left side. When one half of your body doesn't work, the other half also finds it very difficult to work. So, from being immobile, I have come huge distances.
These days, I can walk a little bit with sticks. My balance still leaves a lot to be desired, but I can walk a little on a flat surface. I'm not good when I'm out among people. I have a problem with space, movement and noise - I still don't cope well with those. I can operate around my home extremely well on the flat surface but, out in the community, I really need a wheelchair.
I was told in rehab. they wanted me to walk without aids. I suppose that is the ultimate, but one has to be realistic also and I managed eventually to walk a few steps with one stick. I can manage that a little, but not out in the community with people around me and when I am not walking just on a flat surface. There's the wind - what most people might think of as a breeze is a hurricane to somebody who hasn't got much balance.
I eventually got to the point where I thought, 'If I'm going to operate as a fairly normal sort of person out in the community, I really need a wheelchair'. A wheelchair gives me such freedom. It is so exciting even to be able to go into a supermarket and move freely up and down the aisle.
I still need somebody with me when I go out, because you may not get a park right outside, and you need to be able to get the chair in and out of the car - those sorts of things. But, from those early days, I have made tremendous gains.
When I had the stroke, my life up until that time ended and a new life began. My career finished that day. Friendships with some people ended. I used to worry about that. People wouldn't speak or they wouldn't come and see me, but then I thought, 'It really isn't my problem, it's theirs'.
A friend came to see me the first time in hospital and she walked up the five flights of stairs because she was scared to take the lift; she didn't know what she was going to find when she got there. I admired her courage for coming, where others weren't able to do that sort of thing.
When I got home and tried to become independent again, I became more aware of other things I had lost. Some of the speech problems came to the fore and it is very different when you get home and try to do things for yourself.
When I first had the stroke, the doctors would come in and ask me to follow the light of their torch or their finger, and I would think I was doing it. I don't think I was probably, because now - with reading, for example - I have real difficulty. I know what the words are, but I have real difficulty following the words and I can't keep my eyes scanning across like you need to when you read - the old finger comes out.
Sometimes, I also have a problem with talking and can't stop. Other times, I have a problem if I'm trying to give directions to people, even if it is just getting something from a kitchen cupboard; I just get so tangled trying to get the instructions out.
One makes a new life for oneself. It is not the end of your life and it is not the beginning of the end, but I think - in my case - it was a new life starting up with lots of limitations and restrictions, but I have developed a new life in that context.
Can you tell us what you do differently now, compared with before you had the stroke?
Prior to the stroke, I was an extremely busy person. I was a senior person with the Education Department. I was doing some University lecturing. I had just finished a Masters degree and I was convener of an international conference, which I had to give up because of the stroke. So I suppose I was 'go, go, go' and now I'm 'slow, slow, slow'.
My life is extremely different these days. It is quiet, basically, around my home, but I get out into all parts of the world through the Internet. Prior to that, writing was quite significant. I was left-handed, so I taught myself to write a little with my right hand. I started at the end of the day, if I had enough energy, to make little notes about what had happened during the day, just in point form.
The writing was a very private thing at that stage, but I found it very therapeutic. After I left the hospital, I found it therapeutic to write poetry.
So, my first book came about that way. It was just a little book of poems, but it has been used in so many ways - and not just locally: throughout Australia and all around the world. Then, from the notes I kept in a journal over a number of years, I kept building on it. I had volumes. So, it was eventually published in a small book. It was from the day I had the stroke up until pretty much the present. It is so good to know what happened to me hasn't been wasted, and if other people can be helped and learn from it, I feel I've still got a purpose.
I can't go out and help people and can't go back to the workforce. Skills I needed for work were no longer available to me. I felt enormous guilt over that. 'Wasn't I trying hard enough? What was wrong with me? Some other people have gone back to work'.
I know now that stroke affects everybody differently. No two people are the same. Some can go back to work, others can't, but through the technology now available, I feel that I have been contributing. Hardly a day goes by when I don't have an email from someone, somewhere, asking about my books or could I perhaps tell them where they could get some help.
Did you find during that time that people tried to help you?
People do say the most extraordinary things to you when you are in a wheelchair, or they will totally ignore you. By and large, people want to help and often want to know what has happened to you. I think, overall, that people don't mind telling their story, but I think you need to be sensitive in the way you ask and how you phrase things. You know: 'Can I help you here?' or 'Do you need any help?'
You will get the odd grouchy person who might snap back. If you do encounter that, I don't think it should put you off asking.
I have to ask people to get things off the shelf in the supermarket; for example, things are high up or I can't see into the deep freezer and that sort of thing. I can't reach and I need people to help. By and large, people are only too willing to help.
What would you say to someone who has had a stroke?
I would just try to encourage people. Yes, it is difficult. Every day is going to be a battle. Life possibly is not going to be the same again, but there is tremendous support available for people. When you are down, try and lift yourself up. Of course, you will have down times, but be encouraged that people can, and do, go on and make recoveries. Alright, our lives aren't what they were before. We are going to experience tremendous suffering and difficulties, but we are the same people, people of value, people to be loved and people who can contribute, even though it might be in a very different way to the way it was before we had the stroke.
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