Totally Paralysed yet Able to Communicate by Computer

Dave Kelly, who was badly injured in an accident in 1996, gives a moving account of what it feels like to be almost totally paralysed and unable to communicate, and tells of how he surmounted this tremendous handicap with the help of his speech and language therapist and his computer.

This contribution was first published in the Summer 2001 issue of Chrism.

© Guild of St Raphael

Feelings about my Life

How do you give a presentation to even a small group of people when you can neither move or speak? Well, on the 18th September 2000, Dave Kelly did just that at the Communication Matters 2000 National Symposium held at Lancaster University. It was a great triumph for him and for his wife, Jan, and for Mandy McPeake, the Speech and Language Therapist for the Acquired Brain Injury Service at the Westmorland General Hospital in Kendal, who had been participating in his rehabilitation.

Introducing Dave

Mandy begins the presentation by introducing Dave to the audience:-

As you will see, Dave can speak for himself but he asked me to tell you about the way he communicates and how I came to understand what a strong, independent and capable person he is.

Dave communicates by facilitated communication. This means that he cannot speak and needs a helper to hold his arm and to help him scan across the keyboard of his laptop to reach the letters he wants. Dave has movement in certain muscles but usually after two or three times the muscle Ďfreezesí and he cannot do it again. So we have not yet been able to find a reliable muscle movement for Dave to use to operate a switch independently.

Because he cannot communicate independently many people when they first meet Dave, and see how he uses the laptop, have thought it is not Dave but the helper speaking. Jan and Dave were first shown how to use facilitated speech by a speech therapist early in Daveís rehabilitation. They continue to use this as their regular means of communication and Dave, Jan and I more recently used this method to record Daveís contribution to todayís presentation. His part of the presentation has been loaded onto a communication aid with voice output and you will hear it shortly.

I met Dave at the end of October 1998, nearly two years after his injury, and have been participating in his home based rehabilitation programme since then. Since I met Dave his ability to use facial expression has improved significantly and we can now use this to judge his mood and feelings. But even before that there were episodes which convinced me of Daveís ability to think, plan, remember, make judgements and feel as we all do. Just a couple of examples will show you what I mean.

One day I was typing with Dave when Jan was at work and this was the first time I had seen him type my name. He spelt it MANDIE. In passing I mentioned that it was spelt with a ĎYí, but did not alter it on the laptop. Next time I was with Jan and Dave she started to help Dave type, stopped, looked puzzled and asked, ĎIs your name spelt with a Y at the end?í Clearly Dave had remembered because Jan knew nothing of the conversation the week before. Another time, Jan had mentioned, as she was setting up the computer, that she was not happy with a particular carer and that they might let him go. They started to type and Jan stopped after a few minutes and read out Daveís view - ĎI think you are too hard on him Jan, he does the best he caní. I quite often see Dave and Jan express different views in this way as any couple might. These exchanges give me great confidence that it is truly Daveís thoughts that we see on the laptop.

In addition to this Dave has been using the Cyberlink system - a revolutionary way of operating a computer by a combination of movements of the eyebrows and forehead, and brain wave patterns. The creators claim that it can be used to operate a computer by brain waves alone. Dave has certainly been able to regularly complete a maze on the screen of his laptop, moving the cursor on the screen via the head band control. He has also been able to move from one to another practice activity, such as table tennis, selecting by scanning a choice on the screen. We continue to work on this as a possible means of independent communication.

Feelings about my husband

Jan speaks next:-

Dave has asked me to speak to you for a few minutes about what itís like to be his wife. I must admit Iíve found it quite hard to get my head round that. If any of you who have a partner just take a minute to think about how you would describe what itís like to be your partnerís partner, and then talk about it in polite company, I think youíll find it hard too. Anyway here goes . . .

We have been through an awful lot of pain together. To watch someone you love suffer and be absolutely powerless to do anything about it is terrible. Both Dave and I have been through that for each other and for members of our families who inevitably were also affected by our accident. I was told that Dave would not survive the accident, then that he would and that there was a chance that there would be no long-term brain damage, but then, as he stayed in a coma, that he might not come out of it at all. It is now nearly four years since the accident and Dave has not been able to talk, eat more than the odd teaspoon of food, or really move a limb unassisted in all that time. We know about pain, loss, limitations and vulnerability.

But I also know that it is an incredible privilege for me to be able to help Dave. To be by his side and watch him working to overcome incredible obstacles of all kinds with patience, dignity and courage is a very special experience. Yes itís hard, and you wouldnít want it to happen, but you do learn things and grow in a way that is only possible because of the order of severity of the experience that youíve been through.

From the day I started going out with Dave our life together has been an adventure. Our adventures are just different ones now. An adventure now is going to watch a live band at The Brewery in Kendal, going shopping in ASDA, or coming to this conference. Everythingís on a different scale. For me, joy is found in making Dave laugh, or seeing him sneeze, because Iíve known a time when both these things were totally impossible for him.

I know too that Dave and I have been blessed. We loved each other before the accident and we still do. The accident has only served to strengthen and deepen that love. Weíve been listening to Christopher Reeveís book, Still Me, together. In it he says that heís changed his definition of a hero from Ďsomeone who commits a courageous action without considering the consequencesí to Ďan ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstaclesí. I agree with him. My husband, Dave, is a hero and so is anyone else who lives their life in the face of great limitations of whatever origin.

Dave asked me to tell you what itís like to be his wife. Well, as I said, itís hard, but like most other things that are hard it has its own rewards. You canít expect being married to a hero to be easy; youíve got a lot to live up to.

Feelings about my life

Then Dave gives his presentation:-

Hi everybody - my name is Dave Kelly. I'm 41 years old and American by birth. I came to live in England when I was twelve years old. My parents moved over here to start a new life. It didn't work out and they got divorced a few years later. My mother, brother Peter and sister Liz all stayed in England but my father went back to the States and he now lives in North Carolina. I went to Swansea University and did a degree in metallurgy. While I was there I met Jan's brother Rod who introduced me to climbing and caving and shared a house with me for a while. He told me about his sister who had taken him on his first caving trip. She sounded adventurous and I really wanted to meet her. Eventually I did on a skiing trip and we got together a few years later. We had a lot of fun together walking, cycling, climbing, caving, skiing, seeing friends, travelling, camping and just being together. We also liked going abroad on the motorbike. I had always had a bike, sometimes several, and Jan passed her motorbike test and got a bike too. We got married in 1995 and were just thinking about having a baby. I had done an M. Sc. here at Lancaster University and was hoping to get a good job so I could support a family. I had previously been in Information Technology sales but got fed up with the rotten deals you had to make sometimes, all to make some company rich. I got some work at the South Cumbria Community and Mental Health Trust as a Project Manager. I helped make Information Technology systems more useful and easier for the nurses and therapists to use. They got mad spending hours keying in information that nobody seemed to do anything with. I was also looking at NHS net and how that could be implemented for best effect. I only had a temporary post but had hopes it would be made permanent. Just before Christmas that last year of 1996 we went to see my mother, Doris, in Reading. We set off back on the Sunday evening so Jan tells me; I donít remember. We had an accident on the M6 near Charnock Richard.

I nearly died. I was in a coma for around six months from a brain injury. I canít now talk about that time in detail but I do remember having a tracheotomy in and everyone thinking I couldnít understand except Jan; she always talked to me as normal. Used to get so mad with people who talked as if I was a lump of dead meat. My speech therapist at Hunters Moor got to know me and tried me with a Personal Computer. It was great to be able to show that I was a human being. Even so, because I had to be helped, some people didnít believe it was me. I couldnít move any part of me by myself. I wanted to die. I wanted Jan to leave me. I felt obscene. I needed to die so that Jan could be happy again. I think I gave up all hope of ever being a worthwhile person again. I was also feeling really ill. Felt like I was dying and thought great. I couldnít focus on anything and stopped my typing. Felt like I was in a black tunnel with no end. I know now that I had hydrocephalus but it wasnít diagnosed for ages. I kept getting infections until my mother and Jan got me seen by Chris Adams in Oxford. He diagnosed me straight away and put a shunt in and probably saved my life for the second time.

For a while I didnít feel much better. I wished I hadnít had the shunt done even though I could tell I was physically better and started typing again. I hated being like a baby, but they are better off than me, hated being so dependent. Hated making all my friends feel bad. Wanted them to stop coming to see me; couldnít cope with it. Hated not talking. Hated not eating. Hated being stuck in the house all the time. Felt my life was stupid and pointless. Just made work for everybody. Couldnít be a man for Jan. Hated not being able to do all the fun things like ride my motorbikes. Felt bad we couldnít have children. Felt Iíd ruined everything. Jan told me I hadnít but I knew I had. Decided I had to get things sorted out. I wanted to make a will for when I died. I wanted to kill myself but I couldnít. I asked Jan to help me but she made me see she couldnít. Didnít know what to do. And if I did I couldnít do it anyway. Thought I was going to go mad. Jan asked me if there was anything that would make life better for me. I said a dog. Wanted some life in the house, something funny and playful, something for Jan to have fun with. So we got Felix and he did help. Although I couldnít play with him I could watch. Really glad we have him heís a big help. I think I started to change then. I got a feeling there might be fun again in my life. We could have a baby perhaps now I was able to make love again. Then something really special happened. I had been thinking that there must be some reason for all this suffering. Why had it happened? Why had I lived? Could have died many times. What was I still here for? I talked with Jan about how you could become a Christian and everything just fell into place for me right there and then. It was as if someone was saying to me you wonít ever be alive until you understand that God loves you whatever youíve done.

I wanted to be living my life for a purpose. I didnít want to die without having made sense of my life. Becoming a Christian has helped me to feel that I have a life and a purpose even though Iím so disabled. You have to have hope to be able to be a man. For me thereís got to be hope of being a better person than I am now or I might as well go now. By a better person I mean better in terms of character not physically. I know I have a lot of growing to do yet but that gives me something to work for. The Christian faith has given me so much to think about; thinking is something I have lots of time to do. You never know when you might die but as a Christian you can know that when you die God has decided that you have done enough here. For me thatís very comforting because I know Iíll die when Godís ready and not before. I know Iíve got to live as best I can in the meantime or Iíll be wasting the time God has given me and Jan. Donít feel sorry for me and Jan because weíre lucky. Weíve been given a second chance to look at ourselves and decide how weíre going to live the rest of our lives. You donít do that under normal circumstances. We know now how we want to live our lives as Christians. Then we can at least know weíre doing the best we can. Perhaps I might have wanted to without the accident but I doubt it. Think I havenít explained this part very well but I know in my heart what I have to do. So I need to get on with things and not waste time wishing I could be different. Need to get rid of any junk from my other life and start again. Need to build a new life for me and Jan

I had to start trying to find things I could do instead of obsessing about all the things I couldnít do. Realised I hated having things around that reminded me I couldnít do things any more. I decided to sell my motorbikes. Lee got them running for me which was really great of him. It took a while to sell them but I felt much better once theyíd gone. Hated knowing they were just rusting away and not being ridden. Perhaps I should have done it sooner but it takes time to understand what you need to do. We got a van so that we could get out. My mother helped us buy it. Itís great and means I can join in things and have a more normal life. Think having transport is essential for someone like me and for Jan, she needs some freedom too. I need to find some way to communicate by myself. Iíll always be restricted until I can do it for myself. I have a toy called Cyberlink but I canít use it for communication yet. Its good fun and lets me show the sceptics that I can do things but itís not really enough for me. Weíre trying to have a baby again. Weíve both had the tests and everything is O.K. We may need some help but everyoneís really been behind us. All the doctors have been great and think itís good that weíre trying to have a family. I know many of you might look at me and think poor guy what kind of a life does he have? I can tell you itís no picnic but itís full of joy and hope. No one can ask for more. Want to say thank you to Jan - love you very much. Thank you to Doris for being my mumsy - love you too. Thank you to Mandy for encouraging me to do this. Thank you to all my friends, helpers and therapists. Thank you to you all for listening to this today.

Bye for now,


© Guild of St Raphael