Things can get pretty quiet for me at times around home. I can’t carry much of a workload in the parish so it’s two afternoons a week at the gym and frequently, one morning a week at the Stewart Centre, where the victims of stroke either listen to guest speakers or compare notes among themselves.
One of the problems I face is called aphasiawhich has the effect of memory loss. It frequently affects stroke sufferers and is often much worse than mine. How it works is that unless I’m really familiar with the person and the topic of conversation, I can’t remember my lines. In my head I know perfectly what I want to say but I can’t say it. Of course when I’m addressing a crowd I can’t remember a single thing. Each word has to be marked out. You can imagine how frustrating it can be, especially when preparing for Mass. If people are trying to have a conversation they are not so sure that you can even think straight. They’re just not sure.
The phone, too, is a real problem for me as I don’t know until I actually try to reply what, if anything, will come out that makes sense. Of course having only one hand makes phone calls even worse. You can’t write things down while listening on the phone—this is a real hassle.
At its worst aphasia robs sufferers of all speech or reduces them to a couple of words. Imagine, for example, that you could think every kind of thought but the only thing you can say is ‘cuma’. Fortunately, the strain I suffer from is relatively mild.
Apart from aphasia and the non-use of one and a half limbs, I also get very tired. This is true even when I am with very sympathetic people unfortunately. I love being with people and I couldn’t imagine living by myself but they can drain me very quickly, too.
The few that I’ve got to know well know this and put up with my silences or slightly weird replies. What comes out of my mouth isn’t always what I’d planned to say! Sometimes what I actually say is embarrassing, to say the least. This problem is not as bad as it was but it is still there. The fact is that strokes cause tiredness and aphasia and I had a king-sized stroke.
This is why every month or six weeks I take myself off to another familiar place. Hawera is one such place. The parish priest understands me there, too. There are many in this parish who I have come to know really well and I can think about them and pray for them but as soon as it comes to knowing and saying their names, I can’t do it, I can’t remember and if you can’t remember their name then you can’t look up their address!
I live in a warm and wonderful household. I love the parishioners and the people at the centre. But I do have some lasting problems and I share them with you.