Rob Handley

I am going to tell you a story of what happened to me in 2001. It was something much more terrifying and isolating than you could possibly imagine. Something went badly wrong with my health. To be more precise, my brain was damaged. But as I am typing these words now, over one year after the event, I feel normal. Also, I look normal to people who perceive me. It is only the hesitant way in which I speak which gives some idea of the trauma my body faced. My brain has rearranged my processing power to take control of my language, in a way, which I still believe to be utterly amazing.

As the time of my stroke I was living alone in Swanley, Kent. It was a cold Tuesday morning in late January when it happened. The night before I couldn't have felt healthier. I went for an hours' workout down my gym and afterwards I felt totally dynamic and focused. Later on that evening a neighbour popped round, who is also a good friend of mine. I was telling him about this weight gain powder (which becomes a milk shake) and how I was getting on with it. I had been trying the weight gain (they sold it down my gym) for about two months. We were laughing and joking about all kinds of things, and the danger of a stroke couldn't have been further down my list of priorities. I went to bed around 10:30pm...

I woke up feeling normal. The first half of my morning was routine and I went upstairs to get my work clothes on. I put my trousers and shirt on, but something was wrong with my right hand. I couldn't do up the buttons on my shirt. Suddenly I thought 'What's wrong with my right arm? Did I injure it down the gym last night?' I left my bedroom wearing trousers and an unbuttoned shirt, and I felt myself beginning to limp on my right leg. The right hand side of my body was getting numb. I was starting to panic now; only because I did not have a clue what was happening to me. As that particular point I thought 'Should I phone in work sick?' I still did not realise the enormity of this situation. So I struggled with the stairs and halfway down I collapsed on the hallway floor.

I was lying motionless for a while. I was lost in my thoughts about what I should do next. Suddenly I remembered I was going to call work, but I had to think of something to say to them. Eventually I crossed my living room a bit like a war wounded soldier and reached the phone. I picked up the receiver and looked at the numbers. It was like looking at an alien language. What was happening in my head? I could not string together a simple phone number to dial. I tried really hard to type in several numbers but it was useless. Now looking back, it was from this moment on that I was beginning to suffer from speech and language problems (asphasia).

Another hour passed and all was silent. I was on the verge of falling back to sleep when the phone rang. The ringing tone seemed deafening. I picked up the receiver and got the shock of my life. It was Kathy, a work colleague, obviously wondering where I was. I can't remember much of what was said; but from my end of the conversation it was garbage! The only sentence I could pronounce was 'Oh my God' which was said between bits of other sentences. I could not piece together or pronounce half the words I wanted to. It took a later phone call to realise that I wasn't winding my work up, and an ambulance was called...

Inside the ambulance on the way to the hospital I was thinking that, above all, this day was going to be different! I saw a medic speaking on a phone and he was looking at me with concern. I know now that he was speaking to my work colleague about my current predicament. Apparently he was saying to her 'Is this confused state normal? Can he speak another language?' (I think he thought I might be a foreigner having difficulty in speaking English!). At that particular point I couldn't feel more disconnected from my life than I had felt then. Instead of participating in my surroundings I could only watch as I started to be cared for by the medical profession.

I was taken to Queen Marys Hospital in Sidcup; and a few days later transferred to Kings College Hospital in Denmark Hill. My diagnosis was a 'left middle carotid artery stroke with carotid dissection'. But I didn't know this at the time; and if I was told my diagnosis I would probably not have understood it. All I knew was that I had a very bad speech deficit and I couldn't move except when I was pushed in a wheelchair. I tried reading from a book but it was hopeless. The therapy staff at Kings were all very friendly but I couldn't remember their names initially. The first two therapists I ever had were the Speech & Language Therapist (Juliette) and Physiotherapist (Ben). It was like one smiley face after the other.

After a while I could tell by my therapist's body language whether I was doing a task correctly. The very first few weeks of my speech therapy consisted of Juliette showing me several sorts of playing card with pictures. I had to say what was on the card; on the cards were simple nouns like 'Apple', 'Flower' or 'Car'. The last time I had learnt something similar to this was at my infants school. I thought then that it was going to be a long process back to full speech. I think they are taught to reward a patient with elation and joy whenever they sense that you are thinking positive about your therapy exercises. Sometimes though you get the impression that the therapists are speaking to you as if you were a kid. This was noticed quite early on when I didn't have the speech to converse or answer back!

The weekday life at the ward I was in was quite busy. Apart from all the doctors, therapists and friends coming round there was a number of junior doctors who were still at college. Part of their college course was to go into the ward, with a qualified doctor, and practice speaking to and examining the patients. In the first month after my stroke I was examined by a couple of student groups a week. I didn't like it at first, I thought it was an invasion of my privacy, but I saw the funny side of it on occasions. There was one group, who after 3 weeks into my recovery, was standing around my bed wondering what medical knowledge they could recollect. The doctor, who as it happens was my doctor who knew all about me since I was brought to Kings, deliberately didn't tell the students about my condition. I think he wanted to see how their diagnosis skills were coming along. By this stage I was looking pretty healthy but my right side was lacking in sensation; and my speech was pretty aphasic. He picked on a young female student to introduce herself to me and start to find out my medical problem. Obviously I couldn't answer in any detail at all her first question which was 'Why have you come to hospital?' The utter surprise that she showed was very amusing, after I garbled my way through a self diagnosis and pointed at my right arm. She said to the doctor 'Oh my God! What is wrong with him!' Obviously she had fallen at the first hurdle!

I remembered my family visiting me on a daily basis. The one thing which I was told was: You will get better, but it is going to take a while. Nothing about a stroke happens overnight; and sometimes your disability will seem worse than it did the day before, but over the period of months of even years your recovery is getting better.

I was walking, with a limp, about 6 weeks into my recovery time. About that time I was moved to another hospital specialising in rehab (Kings College Hospital in Dulwich). After I was introduced to the therapists and nurses in my new home for the next few months, a nurse pinned up a timetable behind my bed. She explained to me that they work you really hard here, probably more than double the therapy time over my last hospital. I was introduced to an Occupational Therapist for the first time. Her role was to make sure that I could look after myself with tasks such as washing in the morning and preparing meals. I didn't really have any problem with any basic living skills.

I was able to go to my parents at the weekend, which meant I didn't have to eat some of the more distasteful meals on offer. It was an experience meeting up with my friends to go down the pub. They all spoke so quickly; in fact the whole world was too fast in my opinion. Another thing I noticed was that I could hear background noise in the pub; before my stroke I could just shut it out and concentrate on the conversation. After speaking to them for about two hours I noticed my tiredness taking hold. I was then that I realised that to climb this mountain of recovery I am going to have to drag a 'ball and chain' wherever I go. I still feel it now, of course, but it is less effective at slowing me down.

Annabel, my new Speech Therapist, pushed me hard to work on my speech. She set me a few goals to complete; like 'Order a stamp from a Post Office' or 'Buy some drinks for a group of friends'. What I have found is when you have to ask a stranger for information preparation is the key. Especially when I am on the telephone, when body language is non-existent. I have to write down the key points I am going to say. She played a tape, which I had recorded at the start of the course and compared it to my speech in my last week in hospital 2 months later. It was a great improvement.

After 2 months at Dulwich I was 'ready for the community' as the doctors keep on saying. That means going to a local stroke group once a week to further my recovery. One of the therapists told me that the first six months is the best chance of getting my walk and speech more back to normal; and that the next six months (up to a year) the recovery is less than before but still beneficial.

That's my recovery story; or at least the first part of it. Currently I am going back to work part time; which is going to present other challenges. The organisation Rehab UK are going to help me with this.

I am just so happy that I have recovered as well as I have done!

Thanks to Rob for sending in his profile. Anyone else who would like to share their story can send it along with a photograph (if you're not shy!)

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