Aphasia. What a shame!

A and I have had quite a long time (about four years) to come to terms with the scourge of aphasia, and how it can blight its victims' lives. To be sure, we had even greater life-threatening medical issues to deal with one year ago. But as difficult for both of us as A's three-month hospitalisation and slow recovery from open-heart surgery were, the challenges of all that never had as damaging an effect on our relationship or our quality of life as does our ongoing battle just to be able to communicate with each other.

One reason A's inability to express himself readily in speech and writing affects us to such a degree may be that for all of our adult lives we have both placed a high premium on oral and written communication. Now, however, that critical aspect of our life together is undermined daily and in more ways than can easily be explained or imagined.

Here is just one small example. Over six weeks, A is participating in a 'Falls prevention' program at a nearby rehabilitation hospital. I drop him off there on two mornings a week, and on each of those days he has four hours of intensive therapies – physiotherapy, occupational therapy, counselling, group discussion, even basic tai chi! This is the first time in more than a year that A participates in something on his own. As I wrote in an earlier post, other than time spent with a Blue Care carer, until now A has not followed any program or taken part in any activities in which I did not participate. So this is a big breakthrough for us both.

I know A is really enjoying being part of the rehab group and 'doing his own thing'. When I pick him up four hours later, he is bursting with enthusiasm about this or that part of the day's program. But it's a good thing that he comes away with a few handouts giving some idea of the content covered that day, because all his attempts to tell me about the day's activities usually end in an exasperated groan of frustration on his part. He just cannot find the words he needs for what he wants to say or describe. And I am on tenterhooks the whole time, suspended there, trying to understand what he's desperately striving to tell me. We play 20 Questions, me interrogating and guessing, him sounding out meaningless syllables that seem to him to be related to whatever word or words he's searching for.

A can usually communicate only a small amount of whatever message he is trying to convey, and almost nothing of any subtle or humorous asides that he might like to include. And unlike for stroke victims who may improve with time, our situation is never likely to get better. In fact, it is most likely to get worse.

"Yes, aphasia is a terrible affliction. But to me, there is no shame involved, only sadness."

Far from wanting to suffer all this in private, however, I often find myself wanting to scream at anyone prepared to listen. At the very least, I'd like more people to understand something about the condition and how difficult it is to live with, especially when everything else about us may seem to the casual observer to be quite normal. I'd like people to stop telling me how great A looks, and instead spend some time trying to talk to him, or at least ask me what they can do to help. I know some people prefer to remain very private in their battle with aphasia. But for myself I just cannot understand why anyone would be worried about letting their name be used publicly when it might help to bring this debilitating condition out into the open, where others may begin to understand it.

What shame could there be in being recognised in your community as people who are dealing with aphasia? Yes, aphasia is a terrible affliction. But to me, there is no shame involved. Only sadness. But who does it help if we go on trying to deal with it behind closed doors? Mightn't it be easier to bear if more people around us understood what we are dealing with and could help? Who knows if sharing our story wouldn't help someone else who is just starting down the road and searching for ways to cope.

I know that no two experiences of aphasia are exactly alike, so I guess everyone must deal with aphasia in their own way. But some kind of acceptance, some willingness to say out loud or in print, "Yes, we have this problem, and here's what you can do to help", seems to me to be a good first step to take.