John with his wife Paula
John Smejka was Head of Engineering at Anglian Water living in Lincolnshire when a stroke left him with severe aphasia. John has been kind enough to share some of his experience with us to raise awareness of this complex communication and language disorder.
We spent Christmas Day in Lincoln and Boston hospitals, I had a terrible headache and couldn’t see from my left eye. It was about 4 o’clock in the afternoon the stroke hit me and I no longer had use of the right leg and arm and I couldn't speak any words, not a word. I thought that was how it would be for the rest of my life, unable to work, play the guitar or speak.
"I thought that was how it would be for the rest of my life, unable to work, play the guitar or speak."
While I was in hospital, I didn’t want many visitors, but my fiancée (Paula) my children and my parents visited. If I could talk, it would have been easier to have visitors. Talking is the key. When Paula visited we did therapy exercises, she pushed me for a ‘walk’ in my wheelchair, or she came on the bed for a TV watching cuddle – some things don’t change! When my parents visited, conversation was impossible, I couldn’t speak at all and they didn’t do anything except visit me, so had nothing to talk about. Eventually I told them they needed to visit me less often.
John and Paula with family on their wedding dayWhen I came home from hospital, Paula had moved into my house, with her son (Cameron). Paula and Cameron had to be with me all the time, they helped me with my exercises and we learnt how to communicate together. My relationship with Cameron really started at that time, it is based on mutual interests and silly humour, it has perhaps been easier for Cameron to accept my difficulties as we didn’t know each other so well before my stroke.
It has been harder for some of my children to come to terms with my stroke, especially dealing with aphasia as it hides my feelings, knowledge and stories. The two kids I was closest to before my stroke have found this most difficult, whereas the other two, seem to have adjusted much better, one of them even says he feels closer to me now than he did back then.
John, busy digging a pond in his gardenMy relationship with Paula is still good (she is my wife now!), we used to spend hours talking, now we are quiet more often but she tries to work with me so I can tell her stories, ideas and feelings. It makes Paula really sad when she misses my ‘wise counsel’ at times of difficulty.
My social life has almost disappeared. The aphasia makes it so hard to chat, especially in large groups which is how I used to socialise. I know that my friends miss me and I feel bad that I don’t go out more but it’s just not as much fun anymore – I can’t help that.
This blog was published in association with the Stroke Association. Click here to find out more and donate to support their work.
Wings is running at the Young Vic until 4 Nov. Emily, a fiercely independent aviator and wing walker, suffers a stroke that destroys her sense of reality.
Fragments of her life come together as she struggles to find her voice and her self.
