It’s been a while since my last post. Apologies, but I slipped down a very dark hole, which I’m slowly emerging from. Kind of. Maybe. I think.
You see, it’s hit me. The passing of Professor Stephen Hawking a few months ago made me realise there’s no happy outcome to this grim tale. This is happening. This is real. Shit.
When it was announced on the news of his passing, I felt sick. I cried as the reporters detailed the horrors of Motor Neurone Disease and how it forces someone to die a slow and painful death. It was just too much to bear. Too close to home. On seeing me upset on that miserable March morning, P asked me what I was crying about. “It’s Stephen Hawking”, I said. “He’s dead”.
“Oh”, came the reply. I looked at him. He didn’t seem at all affected by this revelation. “How old was he?”
“76”, I said.
“How did he die?”
“In his sleep”, I answered.
“Hmmm… 76 and died in his sleep. That’s a bloody good innings if you ask me! I’ll take that!”
Therein lies the difference between me and P. All I saw was the tragedy of the situation, and yet from his point of view this was good news! Stephen Hawking didn’t die gasping for breath, riddled with Pneumonia and in agony. He died peacefully, surrounded by his family. He lived 50 years with this bastard of an illness and fought it every step of the way. From P’s point of view this provided some comfort and dare I say hope. And more importantly it has spurred him on to now accept help.
It’s now time to start adapting the house to accommodate P’s deteriorating condition. He is weakening at a pace and now struggles with the most basic of tasks. Over the past few months we’ve had visits from Physiotherapists, Nurses, Occupational Health and Psychiatrists, not to mention lift-fitters, ramp-fitters and even someone who will install a fancy loo seat that heats up and washes your bits! And it’s remote-controlled! I’m telling you now – I’m shoving P on a potty ‘cos that bad boy is mine!
P is dealing with new challenges every day. Extreme fatigue is a major issue. The simplest of tasks can wipe him out for hours. He needs a straw so he can drink without spilling. He has to put special drops in his mouth to stop him dribbling, as he can’t swallow often enough to get rid of it (which most of us do without thinking). He can only eat small, soft pieces of food and has an appointment next month to arrange the fitting of a ‘peg’, which is a feeding tube straight to his stomach. Something he has been trying to put off as long as possible. He has to sit with a neck cushion on to support his head, or else he ends up in a lot of pain from the effort it takes just to sit upright. He is so bony from muscle wastage, that it hurts him to lie down in bed. He is in pain most of the time and has constant muscle twitches, and yet he rarely complains. He’s clumsy. He spills things. He falls over. There was a time when I would piss myself at him going arse over tit, but P losing his balance can now have serious consequences, as he cannot use either of his arms to break his fall. Something he finally accepted after throwing himself over the handlebars of his bike (don’t even ask me why he was on the bloody bike), resulting in a broken cheekbone and dislocated jaw. As if I’m not going insane already, I just reckon he’s making sure that I’m going to end up rocking and dribbling in a corner somewhere!
But, he’s a determined swine. When he’s tired he will ask me for help getting dressed, or to cut up his food (not pizza), or lift something, but most of the time he wants to do it himself. Even if it takes three times as long. This is a man who needs two hands to lift a toothbrush, yet he will still vacuum the carpets, or iron a few clothes, or go to the Aldi for the groceries, because life goes on and that’s the way he likes it. Although, he’s not best pleased I’m now stronger than him and can totally beat him up whenever I like! Come on matey, try to tackle me with your ‘special’ arms! No chance. (He’ll be calling me a bitch right now).
But this is what see’s us through. Finding the humour in the dark times. Well, that and a mild anti-depressant. I mean, sometimes that hole is just too deep.
I’m going to leave you with one last thought, from the great man himself, Professor Stephen Hawking:
Ain’t that the truth.
PS: Anyone want to buy a bike?