So this is life. Inextricably linked to death. The other side of the coin, not heads nor tails, but birth and death. Only death can teach us this lesson it seems, for us in the West who are protected from death, who walk around in an illusion of security and control, holding onto our spiritual beliefs in the hope that they will protect us from the inevitable, only they cannot. Life and death, brutally, inescapably enmeshed with the other.
"So this is life" I thought over and over again, in those awful days after my beautiful, loving, joyful, kind, patient and seemingly indestructible husband quite suddenly, out of the blue, became sick with pneumonia and died within just three days. He had survived Motor Neurone Disease for 11 years, without even one day of sickness. Aspiration pneumonia. So many, many years of controlling saliva; suctioning, head position, medication, room humidity, monitoring the weather; the drying air of a bi-pap machine but eventually, inevitably, the saliva finally won the battle - one time too many, down into the lungs, only this time, we'd not get away with it.
We who had grown complacent in the face of a terminal illness, we who had thought that we would be forced to choose the time and manner of his passing and eventually have to cease treatment, we who talked about death as if it was like having major surgery, not the ultimate finality, wrenching us apart. But then, if we had really known, what separation from each other would be like, how would we ever have functioned? To live with a terminal illness in a way that does not have you weeping over each other daily, it must be lived with bravado, compassion, humour, courage, patience and a carefree attitude, that says come what may, we will manage.
And so in its gentle but cruel kindness, it came, what we had hoped for and yet dreaded, what we had strived to delay for as long as possible and yet had at times feared would never come... a natural, peaceful passing for my beloved man. No need for mind-numbing decisions, no need to turn off machines or cease PEG feeds; no brutal, cold-hard logic of goodbyes. Death, I have since been told, always seems sudden, it leaves no time for goodbyes, no time for rescheduling, no time for second thoughts. There was no more time.
The dreaded 'do not resuscitate' on his Advanced Care Plan was forgotten, no questions asked by the wonderful ambulance crew. They burst into the room in a blaze of strength and in an instant took control, over-turned years of husband-wife, careful team-work. And in that traumatic moment I lost him, had to let go, to stand back helplessly, numb with shock. He thankfully was unaware, protected by unconsciousness that had come on in an instant, sparing him suffering. The paramedics, just saw a young man who deserved to live, and did everything they could, manually ventilating him for forty minutes, giving him oxygen, two ambulances with sirens flashing, to give us something priceless, immeasurable, his regaining consciousness and a precious final 24 hrs in which to say our goodbyes.
I will not discuss his actual passing in detail, if I share the blessings one more time, I might lose the memory of them completely, but it was peaceful and natural, it restored my faith in the soul, we were both protected and wrapped in love it seemed. I write all of this for anyone with MND or their loved ones, who might be reading this and are fearful of what the end will be like, as we too once were. In the end, it was as natural as falling asleep. Trust that you too will be protected.
It is not death we must fear, rather it is not being patient enough, the times we are irritable, the holiday we delay until it's too late, the boredom with the care routine, the frustrations of wanting to travel, have a career and just sleep through the night; it is these things which will come back to haunt us. When we are finally free to travel, have a career and sleep through the night, they seem worthless things without our loved one by our side. But then, luckily, Michael and I knew this, even though at times we struggled. We knew that freedom from care (pun intended), would come at too high a price and so we persevered and lived our lives, celebrated the moments, cherished each other. Only now looking back, I can see that life would have been easier, if I had kept life simple, completely surrendered, trusted in what life would bring and been utterly confident that it would all fall naturally into place. Then the mind would have been less burdened, and those times when I was impatient or inattentive, would have been less. I am though grateful for the majority of times when I was patient, loving, attentive, for the times when I knew that worldly goals meant very little. That caring for him, was about as good as it gets.
In the weeks after my husband passed, I felt such a deep compassion for everyone in the world. We who walk around with our mobile phones, our internet connections, our busy days filled with must do's, our sense of urgency about life, our much loved few. It has brought me great comfort to know that we are not alone, that we all must face these things. It makes the mind-numbing, sledge-hammer of grief, easier to bear.
Every single one of us will one day take our final departure, say our farewells, with no backward glance, no selfie, no forwarding address, no in case of emergency please call, seemingly forever off-line... but with grief also comes great blessings. In amongst the grief, is love, love, love. In my husband's absence, is his love. Amidst the knife-edge pain of missing him, is the presence of love. Yes, life and death are two-sides to the conundrum of existence, but it is love which links them both, love connecting us all with our husbands, wives, children, friends, neighbours, strangers.... it is love that is the gold, of that two-sided coin.