Welcome to April, perfect month for cardigans! Warm, comforting sunshine and cool wind make for ideal layering weather, provided of course that you sit at exactly the right angle and rotate every half hour or so. Gotta get that combination just right.
Cosied up in my cardigan, I am most disappointed to discover that International Cardigan Day is not celebrated until November 13th; something to do with Fred Rogers apparently, and wholesomeness, or something like that … or maybe it was kindness – yep, it must have been kindness. Well, they got that very wrong – in November, in Scotland, a cardigan is far from wholesome, and much more akin to cruelty than kindness. But in April, just about anywhere, a cardigan is perfect.
I do think cardigans deserve appreciation, despite their denigration by one of Scotland’s most renowned sons, Sir Billy Connolly. (Just google ‘billy connolly cardigans’ and give yourself a treat. The man is the world’s best raconteur, as well as hands-down hilarious.)
In addition to his eloquence regarding many notable topics besides cardigans, Sir Billy has been courageously outspoken about Parkinson’s disease, a condition that he has been living with for over a decade. Sir Billy, I must say that I don’t agree with you about cardigans; but I really do appreciate your candour about Parkinson’s, and I know my mum did too. She died almost one year ago – secondary cause of death: Parkinson’s. So, today, on World Parkinson’s Day, I would like to speak out in my own small way, in memory of her.
You don’t die of Parkinson’s; you die with it. That’s the mantra you learn, right at the very start, right when you receive the jarring diagnosis. When will it kill me? – you ask, shell-shocked. The neurologist smiles kindly: oh no, no no, you misunderstand, Parkinson’s doesn’t kill you. Goodness gracious, please don’t be alarmed! Although, just to be clear, I ought to tell you, because after all you need to know … it does tend to shorten your lifespan a little … but it doesn’t kill you … what happens is, you live with Parkinson’s, do you understand? Then, one day, you die with it, not of it – do you understand?
Still overwhelmed with the enormity of it all, you nod unconvincingly. You try to use the remainder of your appointment judiciously, you ask the most relevant questions you can think of; but soon, it’s time to leave, to go home, to adjust, to carry on, to adjust again, to plan, to share, to adjust yet again, to cope, to keep adjusting, to battle, to live. The ensuing years whizz past – that is, except for those excruciating times, when your body freezes and your muscles refuse to listen to your brain screaming at them. You live, and love, and laugh – trying harder every day to laugh, to laugh in the face of the insidious disease you have been forced to accept as your bedfellow. But; every day, it takes a little more away from you, and then a little more, and a little more – fraction by tiny fraction. And, every day, illnesses creep into the spaces that it leaves behind.
The next part is appallingly sudden. Mortality confronts you, and your body simply can’t last another round in the arena of illnesses. Your energy is waning faster now, and Parkinson’s smirks behind your back as it sneakily tips you, with the gentlest but most decisive of nudges, past that stage that the doctors euphemistically call the point of no return. It doesn’t seem fair, and it never was.
At last, then; here you are, and here it is: the dying part. And this is where it gets really cruel. It’s also the part that nobody warns you about. Since the time that I bore witness to it, it’s been tormenting me. Maybe writing about it will help me. Or maybe it will help someone. Or maybe it will do neither. But I can’t keep it locked away.
Nineteen days passed between the date of Mum’s fatal prognosis and her death. She had been in hospital for two weeks prior to that, fighting a battle against the illness that turned out to be her primary cause of death. In retrospect, it was evident she was losing. The day that the doctor uttered the grim words, ‘point of no return’, was just a couple of weeks before Mum’s birthday. Some birthday present.
During those nineteen days, Mum was often conscious, and also often lucid. She often wanted to communicate, but almost always lacked the strength. She often wanted to eat or drink, but weakness prevented that too. She had been robbed of the most basic functions – crucially, she had lost the ability to swallow, which meant that even the most painstaking dribble of water was a choking hazard that could kill her. Inevitably, she suffered brutal thirst and starvation. To death. I know this. Beyond any shadow of a doubt. Because, every day, I swabbed her poor, parched mouth, and moistened her brittle, cracked lips. And, worst of all, because one of the very last words that I heard my mum utter was, “Famished.”
God, that was painful to write. But that’s nothing, compared to her pain. At some point, during the fog of those days, I remember thinking, she must be in terrible pain. Because thirst and starvation are painful, right? And she knows what is happening to her, which must be terrifying, right? I asked the doctors, the nurses, everyone: please, can you give her pain relief? And please, can you give her something to calm the fear she must be feeling? Over and over again, the answer was: no, clinical guidelines don’t allow it. Morphine and Midazolam can kill a person as frail as your mum*. We can’t administer any relief unless there is clear communication from her that she is in pain or distress†. Over and over again, I held Mum’s hand as I talked to her gently, trying to detect the slightest finger twitch or eyelid flutter. I swung between raging determination and apathetic hopelessness. Who knows where she was, for those nineteen days? They say that, when people die, they slip away. But Mum didn’t slip away – she was marooned. It must have felt like an eternity.
Above all, I think Mum just wanted to be human – but Parkinson’s robs you of your humanity at the end. It incarcerates you – you linger within your body’s hollow frame as, beyond any imaginable cruelty, it tortures you, bit by tiny bit, out of your lingering existence††.
You don’t die of Parkinson’s, you die with it.
But – here’s the thing: you also live with it. This year, on my first motherless Mother’s Day, I went with my husband to visit his mother, who was diagnosed a few years ago with …
… Parkinson’s.
And I realised that, in the preceding days, I had been so absorbed by memories and sadness, that I had forgotten there can be a certain, incongruous joy in the wider Parkinson’s journey. You laugh much more, and take many more things far less seriously. You actively enjoy your easier moments, finding ways to fill them with happiness and meaning. You take boundless joy in the ones you love, and you take nothing for granted. And what greater achievement can anyone hope for than that?
For all of us, in one shape or another, there is a storm coming. But not all of us learn how to face it. If Parkinson’s teaches us one thing, it is how to face the inevitable, and enjoy the enjoyable. Or, as Sir Billy once put it: grab yourself a sexy raincoat, and live a little!
* But she’s dying anyway! – is what I wanted to scream.
† Unlike cancer, which is known to cause pain at the end of life, Parkinson’s is much more of a clinical grey area. Albeit anecdotally and with no medical expertise, I beg to differ.
†† If you have made it all the way through this admittedly depressing read, you may be thinking that I am an apologist for assisted dying, a very much – ahem – live debate in the UK at the moment. But, although I once may have been, I am not now. The only thing I feel now is gut-wrenching uncertainty. And heartbreak that won’t heal.
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