Making the best of things

MARIE: I recently read a book (not in English) that purported to give advice and support for the chronically ill and those who care for them. I really tried to like this book despite its poor organization, but it fell down in the usual place: no, it does not give support to carers, it just instructs us on how to support those we care for. It shouldn’t come as much of a surprise to me, really, but it was still disappointing.

However, I did take one gem away from this book which made the hours spent reading it well worthwhile. It is the expression amor fati, which loosely translates as “love of fate” or “love your fate”. Wikipedia tells me this motto was coined by Nietsche who I suspect may have meant something like “just accept that life is cruel and ugly and that you can’t do a thing to change it”. But I have decided to understand it more as “embrace your circumstances rather than fighting them”.

It’s so easy to feel sorry for yourself and bitter at the restrictions PD brings to both the person with Parkinson’s and the carer, and I admit we both do that now and again – Jon perhaps more than me because not only is his glass always half empty, it also has a dead fly in it. Neither of us has ever asked “why me?” which seems to be a question that occupies people with some level of faith, but we have been upset that, not to put too fine a shine on it, shit happens and it happened to us (in the picture it happens very neatly indeed).

On the other hand, while the disease has unquestionably slammed shut a number of doors, it has also opened others that we had never even considered. For Jon, for instance, taking early retirement has made him a far more sociable person who stays in touch with old friends and colleagues on Facebook, visits his grandchildren with keen regularity and generally enjoys talking to people about things other than his work – a major change and improvement, I can tell you!

For myself, the disease has led me to start writing about PD – this blog, regular articles, and working on a few book manuscripts – which I greatly enjoy. And it seems there is a decent chance it will lead me away from my current job in an ailing industry (academic publishing) to new and more meaningful work on the carer project that I talked about a few posts back. At least, reactions have been positive all round from carers, health professionals and patient associations I have discussed my ideas with. Will I also be able to secure the funds to make the project possible? I don’t know, but I’m feeling really hopeful. Amor fati in action!

Soft spots

I’ve just been in the UK again – one last dental appointment, and another opportunity to see the kids and grandkids. This time I travelled alone, and although I think Marie and I were perhaps both a little apprehensive about how that would go (will he fall asleep on the airport train, will he be able to get his shoes on and off for security control, will he lose his way in the maze that is Schiphol airport), once I got into it I was just fine.

The grandchildren were wonderful. I have been over often enough this year that they really know me now so we can cut out the coy/shy stage. My granddaughter of 2 ½ was sweetness and light and wrapping me round her little finger. She really brings out the best in me, had me crawling around under the table chasing lost crayons and playing silly games. I was amazed that I managed – but it was OK, somehow the medicinal effect of those big dark eyes just melted my stiff joints (or more likely produced a useful flood of endorphines). Just the thought of her makes me feel better.

My grandson of 4 months is still to small to demand much of me besides a soft lap to nap on (which I am exceedingly well equipped to provide). I think he will grow up to be a smart kid, already showing native intelligence in the way he examines everything in great detail (I know, I’ve gone granddad-soft-in-the-head).

Having been down to 75 kg in my morphine addict days, I am now at a record-breaking 93kg. All my trousers are too tight and I suspect the beginning of man breasts, worrying that chest hair can hide only so much underlying porkiness. I also have some knee pain, but whether that is related to Parkinson’s (bad posture and poor walking) or caused by me becoming a fat bastard is anyone’s guess. Anyway, the upshot was that my daughter took me out to buy new trousers from my life-long suppliers at M&S. I decided to go super-comfy and bought three new trousers with some room for growth.

When wife #1 saw me strutting my new style later that day, she asked if wife #2 had approved this purchase. When I answered no, #1 smirked knowingly. Numbers 1 & 2 get on frighteningly well, so #1 was of course entirely right about the reaction I got from #2 (who also wasn’t impressed by my braces and claimed that [braces + trousers 3 sizes too big = Bozo the Clown]). As I write, my wonderful new trousers are being boiled in an attempt to reduce their size and my braces are sulking at the back of the cupboard. So much for my attempt at hobo chic.