— a stranger — was giving me the gift of his whole self, his humanity as well as his care.
I sometimes wonder what the outcome would have been if I had been at home, or perhaps driving towards the meeting, when it all started. Or if I had been alone in the night. These are things all stroke patients wonder about — what went well and what didn’t. In time, we can usually find out some answers. But the hardest question has no answer: What could have been?
In that ambulance, I heard the last real words and acts of kindness that I can recall for ages, other than those from my family. Partly that’s because I was to drift in and out of consciousness for a long time, but also because I was about to be processed as a stroke victim and that didn’t always include kind words. Sometimes it didn’t even include being observed, other than for my symptoms and even then in a cursory manner. What they were looking for was disconnected from the person within.
I was about to become a stranger, being treated by strangers. At times I will be a difficult stranger. This is the nature of much illness, particularly brain injury. But when someone takes a moment, as Terry did, to think what this person would want to hear and then articulate it, that’s strong medicine indeed. It enters the soul and bolsters the will to live.
The emergency ward of the Royal Melbourne Hospital is noisy, bewilderingly noisy. I can’t ever remember hearing noise like this before. It’s coming from inside my brain and is all around. Clatter, voices, banging, footsteps, words that boom and echo. It’s like I’ve entered a screaming universe that is overwhelming my brain. This heightened awareness of sound is common in brain injury, but I’m too early into my journey to know that. Inside the cacophony, I lie on my trolley, more alone than I have ever been before. Others lie beside me — I can hear people shouting at them too. We all wait in distress.
I hear someone say that my daughter Lucinda is on her way. Terry Dwyer’s colleague had phoned her. My other daughter Emma, who lives away from Melbourne, is being told, as are my four sisters and their families. I sense the shock I have just injected into their day but I long to see them. Knowing they’re on their way comforts me like a lifeline through my fog of fear.
But the early stage of stroke is an endless cycle of panic. Nobody knows what is happening or where it will end. The emergency team clusters around. I keep telling myself — and them — that it’s just another silly dizzy spell. Do these people know who I am? Am I sure I do? And, foolishly but insistently, the thought keeps badgering me, who will tell my appointments for tomorrow that I may not be there?
I am helpless as a child, unable to save myself as if I was drowning alone in the ocean. The tides of fate are washing over me and unseen forces are in control. I, who have always prided myself on being the person in command, now scarcely know where I am. My head aches and my left arm seems, painfully, to be out of my control. I’m dizzy and nauseous and I still can’t see properly. The noise is terrifying; people shouting, machines beeping, things banging and distress all around. Surrounded by strangers, I desperately need someone who knows me.
‘Not For Resuscitation’
No amount of education prepares you for the moment whenyou’re told that your loved family member has had a stroke. Orfor the moment when medical authorities tell you to preparefor the worst, and it seems like you are absolutely withoutany power, without volition. Fate is in the driving seat. Whatshould a family do? Accept uncertainty or get involved? Lucinda
As phones ring, the news of my admission spreads in my family. Shocked, they make their way towards the hospital. Unlike me, they know this isn’t just another dizzy spell, but it’s too early to know how serious it is. My family contains educated, articulate people. Some of them also have medical training, but faced with this situation they are just like any other family; caught off guard, they’re launched into a world they are not prepared for and have little real idea about. They are stunned by the extent to which this proves to be the case.
It now becomes their story, at least for the next few weeks and months. I’ve pieced it together from what they have told me since, from their memories and emails they sent to each other in that time. When my memories do intrude, they are often nightmarish, with only a slim connection to reality. But to me, that was reality. I’ve never felt so sure about reality since.
What they have to say makes me uneasy, even after all this time. They suffered, and I suffer for what they went through, for the anguish that I can’t help feeling responsible for. Part of my recovery will be coming to terms with this, and part of their recovery will be assimilating what happened and adjusting.
At the time of my admission, my family consisted of my parents, my two daughters, Emma and Lucinda, and my four sisters. They and their partners were to be my lifeline (not that I was always conscious of the fact) for the next few weeks and then beyond into the years ahead. But as they made their way to the hospital, they could not have known the sort of journey they were in for and what would be asked of them. None of us could have foreseen it.
When my daughter Lucinda reaches the hospital, she desperately tries to get into the emergency ward to see me, but is stopped by the triage nurse who tells her to wait in line. Through the window behind her, Lucinda can see me and explains to the nurse that she is terrified that her mother is about to die. She is told to wait yet again. The nurse turns back to the elderly man who is arguing about his bill, a controversy that seems to be going in circles. After some time, other people also queuing for triage see her distress at not being allowed to get through. So she can get to me, they stand aside to offer her their place in the queue.
In the ward, there is little time for family members to face their own shock and grief. My condition has started to deteriorate. When I was first admitted, the nurse had asked me my weight and I’d quipped ‘too much’. But I’m now beyond humour and my speech is slurred. I’m frightened and not always sure that my family really is here with me or if I just think they are. I drift in and out of consciousness.
In truth, I’m in more need of help than a busy ward can offer. My family is left on its own in the vast, crowded emergency department, trying to bolster each other, and keep me calm, all the while wondering what’s in store. As someone recalls, ‘Things seemed to be becoming very dire indeed. There were hours of confusion for the family, and decreasing consciousness for Kathleen. It was all very negative and confused.’
They are kept busy, gratefully drawing on the nursing skills of my sister to ensure I’m receiving basic care. When I vomit, they clear my mouth and wipe my face, placing me on my side so I don’t choke. My mouth is terribly dry and they moisten it with a large swab, but my thirst is unquenchable. I reach out and grab the swab from them, then start sawing it in and out so clumsily they have to take it away from me. When I’m able to, I ask questions they don’t know the answers to. In the face of my increasing fear (‘What’s happening? I don’t know what’s happening!’) they have nothing to calm me with other than their presence.
What I don’t know is that the results are coming in from my scan. My ‘dizzy spell’ is a major right haemorrhagic stroke, a particularly dangerous medical scenario which few survive. The CT scan describes it as ‘a large right sided intracranial haemorrhage extending from the basal ganglia through the centrum semiovale. Within this there is a central spherical 2x2cm hypodensity, possibly hyperacute non-clotted blood or a mass legion. There is intraventricular extension. There is mass effect of 7mm of midline shift and effacement of the anterior horn of the right lateral ventricle. The temporal horn of the
