Life Begins at Fifty…I thought this was a joke until today. I will admit it: I have been coping really badly for the last few weeks with the huge changes in my life. Going from 100 to 0 has been incredibly hard, and it was only today that I gained clarity as I go into my 50th birthday in a state of calm and clarity that I have lacked for weeks.
The clichés are true – it is all about the mental battle. It really is.
The physical challenges are huge – I am increasingly confined to using a walker, my eyesight is giving me real trouble, and today I almost fell twice: once stepping back into a busy road at a shopping center, which was thankfully empty. I don’t underestimate the physical challenges of my probable diagnosis of PSP (or whatever bunch of letters they may one day establish I actually have)—but for me, that is not the main game.
The Real Battle: Mental and Emotional
The main game is the mental one – from three directions: the behavioural changes the neurological condition actually brings (it should not surprise anyone that a brain disease alters behaviours 😊), the psychological and emotional impact of the disease, and the impact of the physical condition on the above.
Being forced into early retirement and not being able to drive has left me feeling like a prisoner trapped in my home. Not being able to walk or run has left me feeling weaker. I only realized it today, but it has made me angry, impatient, and I have been taking it out on those around me—most of all, my incredibly wonderful other half, who I had started to see as a kind of ‘prison guard’: my wife.
Fortunately, with some really timely help, I took a huge step back today and was able to see this clearly. I said to my wife that it was irrelevant what she was saying, doing, or not doing – I was like a caged animal spoiling for a fight.
Of course, that would never be outright rage (I have boundaries), but it manifested itself in resentment, being closed off, passive aggressiveness, curtness, argument, sadness, resistance to ideas, and just a thoroughly unpleasant environment.
Why I’m Sharing This
Because it is so important that people take mental health seriously.
We are all a bit Jekyll and Hyde – we all know that in most cases our emotional pain is worse than physical pain, but when others are not doing well, we are dismissive of the same thing and attach much greater empathy and sympathy to physical conditions than to the things that are ‘emotional’. It is simply wrong. Just because it can’t be measured doesn’t mean it is not there.
As someone with a terminal neurodegenerative disease with terrible physical symptoms, I am happy to state for the record that the mental aspect is tougher. It is, of course, even more the case with conditions like PTSD that by nature hide themselves behind a screen of physical normality. If not taken care of, I can truly see the ease with which people can step into depression. And it is real and needs all of our attention, empathy, and support.
Turning 50 with Eyes Wide Open
As I go into my 50s tomorrow, I do so eyes wide open. I have a terrible condition, but I am aware now of the mental and physical impact, and I am going to fight both aspects seriously. I am not going to simply say ‘I have got it’ or ‘it is life’ or ‘what is the other option’. These false platitudes are the same as the hugely annoying things people say to me such as ‘Be positive’, ‘It could be worse’, ‘It is all in the head’.
I have discovered a love for chess, and it is a strategy game. It is a team game. It requires different weapons and coordination.
I am in a multifaceted fight for quality of life—not just mine, but those around me. I have recognized that it is not so simple, and I have recognized that the mental battle is more than half the battle. This leaves me feeling much more positive about stepping into tomorrow and the day after, which just happen to coincide with my 50th birthday.
A Quiet Milestone
I am not planning a party or a celebration, and I don’t want one. I do ask those around me to bear with me and to stick with me on this trip, as I need reassurance and help—because this fight is hard and, hopefully, very long. I have been far too sharp with people around me, and I can’t promise there won’t be moments ahead—but this is actually an important milestone.
If I had written this as I planned this morning, it would have been a very downbeat message. But I go into this coming decade more solidly. I want to thank my wife especially for ‘taking the heat’.
We can all do our bit to help each other in both the emotional and mental challenges we face. I am certainly a little bit wiser today, and I hope it helps at least one other person.
