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I read this morning a number of comments on PSP support groups and it is fair thatk the same theme comes across so often. It was articulated by someone today who simply said:
“Being honest and meaning it in as kind a way as possible, the person you knew is gone and you won’t see them again.”
They went on to say:
“Nobody ever says it that bluntly because they are too polite or don’t want to hurt anyone. I just wish someone had told me as bluntly as that because when you realise it, it becomes easier to navigate the disease.”
It stung me really hard.
What does it mean? What will I be like? How will others perceive me? When will it happen? Is it already happening?
I feel a measure of change already – more anger, more apathy, more impulsiveness, more withdrawal – but I do not feel that I have progressed anywhere near to the point where I am someone else.
Yet it is clear that this happens to many people in the PSP world. Behavioural changes such as apathy, anger, emotional blunting and impulsivity are well recognised parts of the disease. Families often describe feeling that they are gradually losing the person they once knew long before the disease reaches its final stages.
Perhaps what frightens me most is that there seems to be truth in this observation without it being universally true. Some families describe profound personality changes. Others say their loved ones remained recognisably themselves until the end. The uncertainty may be almost as frightening as the possibility itself.
I truly cannot imagine no longer being the same husband or father. I cannot imagine my family feeling that “I” have somehow disappeared whilst I am still physically present.
How do I even prepare myself for this? How do I prepare others? I have tried to explain it logically but the truth is that I do not fully understand it myself. Perhaps nobody really can until they live through it.
I do not think there is a magic recipe other than to enjoy the time whilst we can and to try our best to ensure the people around us know who we are now — before disease, frustration, exhaustion and neurological change begin to cloud things.
At the same time, I also remind myself that PSP changes how people express themselves. It can affect emotion, motivation, reactions and behaviour. But perhaps that does not always mean the person themselves has completely vanished. Many families still speak about moments where the old personality suddenly shines through – moments of humour, warmth, recognition and love.
I cling tightly to that hope.
I pray that I suffer as little from these symptoms as possible and that it is as painless as possible for those around me.
Perhaps that is why so many people avoid saying these things out loud. The possibility that I may one day become unrecognisable to the people I love is almost too terrible to think about.
Yet if PSP teaches anything, it is that tomorrow is never guaranteed. Maybe the answer is not to obsess about who I might become, but to make sure the people I love know exactly who I am today.
