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Yesterday I wrote a document I never expected to write, but one I would strongly recommend others consider.
Following a number of recent episodes, including one last night, I have been thinking seriously about how I would spend my time if I became unable to communicate, either temporarily or permanently. This is a very real possibility with PSP. I have experienced enough to no longer see this as abstract, and rather than viewing it as macabre, I have come to see it as practical and necessary.
So I sat down and wrote to my wife, my power of attorney, and my sister. I set out a list of the things I would want to watch, listen to and eat, alongside a much more detailed guide to how I would want to be cared for if I could no longer speak.
This is not the same as end of life planning or a will. Those are legal documents, and I have completed them. This is different. This is about how I would want to live, day to day, in a situation where I cannot express it myself.
Some of it is simple. The West Wing, Friends and Top Gear are all in. Tennis, F1 and other sport on television. Audiobooks and podcasts, particularly biographies and slightly unusual engineering stories. Music, which is already well documented. And, importantly, being in a cool, well ventilated and calm environment.
Now all we have to do is work out how to get The West Wing, Top Gear and Friends, given that they are not on Netflix or anything else we seem to be paying for.
Some of it is more practical. How I would like to be helped. What might frustrate me. What matters and what does not.
My wife, prompted by a good friend, added another idea: a picture board. A simple visual way for me to indicate basic needs such as coffee or tea, hot or cold, yes or no. It is such a straightforward idea, but potentially transformative.
Writing this felt, on the surface, both strange and overly morbid. But in reality, it was the opposite. It was constructive. It reduced a fear I had not fully articulated, the frustration of being present but unable to communicate. I suspect that frustration could be enormous. This document, in a small way, gives me back some control.
It also, I hope, makes things easier for those who will care for me. They will not have to guess as much. They will know.
Perhaps they should write a document in return, asking me to do my best not to be a pain in the neck, or whichever part of the body this phrase most appropriately applies to. I would happily sign that in return for everything I am asking of them, although I am not able to offer 100% guarantees, as it is asking quite a lot of someone like me.
I very much hope this document is not needed for a long time. I genuinely pray that is the case. But whenever it becomes relevant, I am glad it exists.
I am not happy about any of this, nor about the disease itself. But I do thank G-d for the opportunity to learn from others in the PSP support groups, and to take some actions that may make this journey a little less brutal.
I am aware that my writing has become more serious in recent months. I have said many times that I hope this is all an overreaction, a storm in a teacup. I hope that is still true. But six years into PSP, and after a number of frightening incidents, I am beginning to accept that it may not be.
And if that is the case, then preparing well is not pessimism. It is simply part of living.
