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The expression goes that time is relative. I sort of understood it but totally get it now. A PSP charity asked me if I’d like to write an article for a quarterly edition of a magazine they have. When I asked when I would have to submit it, I was told two months or so before the publication and the publication is in February.
I felt that I don’t know how I will feel tomorrow morning, let alone in three months’ time. I will be in danger of writing something that is simply not relevant to my situation at the time of publishing. As I discussed with them, it doesn’t necessarily matter from a journalistic point of view but for me and for perhaps some of the people reading my blog it could look very strange. It felt awkward.
I am in no way blaming the charity – there is a lead time for a magazine whereas blogging is almost immediate. This underlined to me why timing is simply against PSP.
I feel the same with a book – I can imagine writing a book and taking all that time to proofread, edit and go through publishers and it would be out of date immediately. That I think is why blogging and producing short booklets is by far my preferred option.
I have now watched two videos (one on the Cure PSP website and the story of Dudley Moore) which caused me real emotional pain. I saw the video of (link– this video of the Gervais family) and an interview by Dudley Moore and I was inspired. The trouble is that having looked so similar to my situation in so many ways, I read that they had passed away within two years of the video – it was heartbreaking. They went from being able to talk and communicate lucidly and coherently on video camera to death – both of them in lightning speed. I can’t pretend it doesn’t punch the gut.
Yet, time also passes slowly. It is so strange. I know on so many levels that I have advanced in symptoms at a massively fast rate – a few months to being a step away from a food tube, having moved downstairs at home and using a wheelchair to get around, yet time also moves slowly. It is not like a tragic car crash or a sudden heart attack. It is more like a cross between a lava flow and a forest fire – it seems to inch forward step by step slowly but before you know it, it has destroyed the landscape and like a forest fire it has the ability to suddenly pick up or drop speed and change direction in a way you simply can’t prepare for. It can’t be stopped but it seems to have lulls in the storm but you simply don’t know what will come next.
Yesterday on the Jewish Sabbath – a day I simply love – as a religious Jew I don’t write, use modern technology or cook on the Sabbath. This is not a problem at any other time of my life as there are ways to cope but when you wake up at 2am because PSP doesn’t allow you to sleep and you can’t read much because your eyes are straining, you can’t write, watch TV or check the internet. When you can’t eat much because the food you eat is so restrictive and when you have no company because everyone else is asleep (and mostly upstairs as you are confined to your quarters downstairs so you don’t fall down the stairs) – there is simply almost nothing to do except yoga, consume too many yogurts and hot drinks and think or try not thinking. It is six hours of the slowest possible moving time.
I fear it will get worse. I can’t talk to the patients who no longer are able to communicate but my guess is that this sense of unfilled time – largely because there is no treatment to both help you communicate and to fill your time and focus – is hard. I hear from caregivers too that the time drags as well as they often feel so alone with their loved ones unable to communicate.
This weird dystopian world is the one many of us inhabit. It brings unparalleled absurdity and therefore tragic humour as things are almost never constant and are going through change all the time (I guess like a fire or lava, whose speed makes spellbinding documentary feed for National Geographic but not for live news other than to see the hour-by-hour change and the devastation).
How do we fight it? That is always the question I ask
First I accept the speed of PSP is devastating and I am prepared to adjust and take action at each stage to the extent of my abilities to try to put myself in the best possible physical and mental state. Some people call it mindfulness, some an inner calm, some ‘a good place’. For me it is a mix of learning to breathe properly, satisfaction and gratitude, readjusting the remaining communication skills I will have, clear instructions left with my loved ones about what I want when I am no longer able to communicate and a certain dreadful British dark humour at the absurd/farcical elements of the disease that will pull me through. Above all it is for me faith and confidence that I will be able to handle what is thrown at me, simply because otherwise G-d would not have given me the challenge. I can’t pretend it is easy or that I don’t have my wobbles but the basic foundation stones are there.
Time is neither an enemy nor a friend to me – it is a dichotomy which is what it is. As the lava rolls on and as the fire waxes and wanes. I will live with this bizarre sense of time that feels both so incredibly fast and yet so slow and empty at times largely with the support of my family and friends but increasingly also with the many people I ‘talk’ to in support groups who either understand my journey as a patient but more common are experiencing the other side of the same coin with their loved ones. They are rockstars and I salute them and it is an honour to be talking to them despite the pain they are going through and how hard it is for me as an advancing patient to hear it.
