A trip to the Aphasia Café

Stroke Association

Imagine your life. Maybe you’re a mother. Maybe you’re still at school or have a comfortable job as a secretary. Maybe you’re a builder and your favourite thing is a mid-morning bacon roll at the local cafe. Maybe you’re none of those things. That’s fine. Now imagine your life suddenly ripped away. The next thing you see is the ceiling above a hospital in which you are trapped. You can’t ask for help; you can’t speak. You can’t go to bathroom; you can’t walk. You can’t recognise the person who is gently speaking to you; you can’t see properly. You’ve had a stroke.

Earlier I was lucky enough to join a group of incredible men and women, who meet every every Monday, coming from diverse backgrounds with a library full of powerful and funny stories to tell. One thing they all have in common is their recent history of a stroke. And they have been left with aphasia. Aphasia is a common side effect of strokes, meaning the survivor is left with speech difficulties, which is why I attended the group (I am considering a career in speech and language therapy!). For many, the condition means they must learn to speak all over again. It is unimaginable; these individuals have lived for 50, 60, 70 years, talking, shouting, singing, acting, screaming and joking. Abruptly, communication, something we all take for granted, is stolen.

The group is called an ‘Aphasia Café’, led by stroke survivors themselves and this is their space to sit together with a cup of tea and chat. It sounds simple but ‘chatting’ is extremely difficult for every single one of them. It’s a slow process and requires patience from both the speaker and listener. I met two men and two women, all living with aphasia and I will rename them Marion, Lisa, Otto and Brian for confidentiality’s sake.

Marion and Lisa were the volunteers who run the group and they told me briefly of their inspiring stories of the time spent with aphasia and their astonishing strength has left me in awe. Marion described her slow, but promising recovery, but the lack of support she seems to have received confuses me. She was unable to speak one word when she was in hospital immediately after her stroke, yet saw a speech therapist for a meagre 1 hour per week. Now she has been discharged from hospital, the quality of speech therapy was so inadequate that her husband now pays £100 per hour for a private speech therapist. How can someone with such a debilitating condition be left with no other option but to squander their pension simply to relearn how to speak? Why is care not available for those who desperately need it? I just don’t understand…

It was Otto’s first time to the group on Monday, like me! He brought along his wife, also known as his carer. A year has passed since his stroke and he appears to be struggling more than the other people at the group. He was barely capable of uttering a word and instead uses hand actions and gestures to communicate. He also relies heavily on a book full of information about himself and his family, so when he meets someone, they can flick through the book and understand his story. Otto’s new methods of communication give me faith that he will be able to escape the knots bound by his stroke and move forward with his life with the support of his family. Although for some a full recovery is possible, for others, it may be more beneficial to build upon the strengths and find new, more suitable plans to complete day-to-day tasks. That way, the patient can prosper and grow into new, improved versions of themselves, instead of dwelling on something they wish they could be. Otto’s, like many others, must learn to adapt in this way.

I don’t think I, or anyone for that matter, can appreciate the strain a family member of someone like Marion, Lisa, Otto or Brian must feel. To feel helpless in a situation involving such a close relation is undoubtedly heartbreaking. Otto’s wife seemed saddened by her husband’s condition but supported him and always put his needs before her own. I assume she would have preferred to be window shopping or having some time for herself rather than sitting in a support centre for stroke survivors but this is a full-time role. She doesn’t get ‘holidays’ or ‘time-off’.

Despite their enduring pain, the resilience of these men and women shines through. I have never seen a person chat as much as Marion or laugh as hard as Lisa. Never have I met anyone as humble as Brian or as sweet as Otto. This previously unattainable insight has helped me to appreciate life and the incredible people in it.

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