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It can be helpful to the person with aphasia and their family and friends to hear about other people’s experiences. This can help people realise that they are not alone. A number of charities produce newsletters in which people write about their experiences, and they also provide opportunities to meet others in a similar position. A number of excellent books have been written which are listed under Further reading. The following extracts are taken from some of these books.

Barbara Newborn felt that her aphasia affected her ‘whole social and emotional well-being’. Another person with aphasia says:

‘There were times, particularly in the early stages, when I was in hospital, that I wanted to give up. I was very depressed; I cried into myself when it was dark and no one could see me’. He reports that ‘even when I was improving I felt like chucking it in’. Now however he is glad that he persevered. ‘We got a dog (we got her about six months after my operation) and she makes me go out in all kinds of weather...I’ve been on a camping holiday to France. I go shopping on my own, coping with the buses, swing doors and shop assistants!..On the whole I’ve learnt to come to terms with myself. Everyone deserves the chance to be accepted for themselves’.

In this extract from her poem, Teresa Middleton demonstrates the power of aphasic language:

‘Gaps where words should be. And wrongs tensed.
Senses back to front and puzzles expressions
trying to understand my thoughts....thoughts
clear as bells but come out so muffled and jangled.’

The experience of aphasia from the other side must not be forgotten. Many people’s lives are turned upside down by their partner’s aphasia. Monica Clark recounts:

‘I didn’t think of myself for the first year....It was only one year later at a carers’ group when I suddenly realised all of us were only talking about our partners and we needed to be reminded to talk about ourselves’.

Monica is now hoping to start a pen club to enable the carers of people with aphasia to support each other (contact via Action for Dysphasic Adults - see under Other organisations that may be able to help).

A healthy balance of acknowledgement of the problems alongside adjustment to the future is expressed in the following description:

‘I think it would be wrong to deny the sadness, and it would be wrong to deny the frustration. But...we have a choice here. We can either spend our days looking back on all the things we can’t do any more, or we can say, okay, this has happened, it’s a rotten thing to have happened but our family is important; what can we do together?’