was about the power others have to give hope and respect,or destroy it when you have lost all power yourself.Essentially, it was about the power of words. Kathleen
The CEO of the Murdoch Children’s Research Institute, Dr Terry Dwyer, was listening intently to what I had to say. It was 23 August 2011 and I’d been looking forward to this meeting. I’d planned my words carefully because I knew his response mattered. Not just for me, but for the small group of children worldwide afflicted with the rare neuro-genetic condition known as Angelman Syndrome (AS)
Named after an English paediatrician, Dr Harry Angelman, this little-known syndrome, thought to occur in about one in 20,000 births, is characterised by intellectual disability, sleep disturbance, an unstable, jerky gait and seizures. As if to compensate for their difficult lot in life, these children tend to have happy natures and are known fondly as ‘Angels’.
My grandson, Jack, is an Angel. Soon after his birth we knew something wasn’t right. He was unable to suck properly and seemed a tiny baby for too long a time, especially compared to his bonny brother and sister. It took a long time to find out what was wrong with him and the diagnosis was devastating when it arrived. He might never walk, would certainly never talk, and would need carers all his life due to mental impairment.
We were told there was no cure. It was almost more than I could bear, but I have a long history of not accepting the inevitable. To me, ‘there is no cure’ just means we have to find one. And my meeting with Terry Dwyer was part of my plan to do just that. This attitude was to characterise my post-stroke life, and thank goodness for it. I was repeatedly told all the things I wasn’t ever going to do, have or be again, but, just as with the prognosis on Angelman Syndrome, I have definitely failed to listen! What you believe tends to become a self-fulfilling prophecy and I knew from the first that the ‘no cure’ message would be of little benefit.
Cures are brought about by willpower and determination, which takes me to money and research. I believed that some of the methods that I used in the corporate world could be utilised to help find a cure for Angelman Syndrome. Firstly, I knew that Angelman Syndrome has strong links with Alzheimer’s disease. At the time, this seemed to be a good thing, as Alzheimer’s attracts a lot of funding. What, I wondered, if we could divert some of that money into Angelman’s?
It just so happened that Melbourne was due to host an international conference on Alzheimer’s in March 2012, about six months after my meeting with Dr Dwyer. I knew that if we could have a session on Angelman Syndrome at that conference, we could start to raise awareness. If he could encourage people to attend, I could use my skills to build discussion and goal setting between people from all around the world to accelerate research and awareness.
I was in my early sixties and in the middle of a busy professional career, built on helping major corporations, and also individuals, plan for the future. I helped them to learn to articulate their problems, think laterally and search widely for solutions. I consulted across Australia and in several other countries. I was busy to the point of being frantic (something I now look back on and wonder if it cost me dearly).
I specialised in events that brought company directors in touch with all levels of the corporation — everyone equally — to work and plan together. This created a dynamic where everyone could focus and work together. If Terry would include Angelman Syndrome at this crucial conference, I could facilitate a session to raise awareness, funding and research. Australia had been sadly absent in the research of this syndrome. Our goal was to send a young Australian postdoctoral researcher to the University of Florida, to work with Dr Edwin J Weeber, whose work with mice was showing great promise.
So the meeting mattered. I was there as the grandmother of an Angel, as someone with useful professional business experience and as a potential future member of the board of the Foundation for Angelman Syndrome Therapeutics (FAST), Australia.
I remember starting to speak, all fired up with ideas and determined to get a result. But how far did we get into that conversation? At what point did the stroke intervene and the talking stop? All I recall is that we discussed enough for me to sense Terry’s interest. At some point, I felt dizzy and the room started to spin. I wanted to tell Terry what was happening, to explain why I was faltering. My vision was also deteriorating and I could no longer see him properly all the time — I wasn’t even sure he was still in the room.
But I wasn’t going to let a temporary dizziness ambush our discussion. Nevertheless, no doubt against my protestations that I was fine, Terry called an ambulance and in doing so probably saved my life. I think I collapsed to the floor. Perhaps I did. Perhaps I didn’t. It’s not important. Like so many others, this memory no longer exists for me.
But there is one moment that stands out in my mind. It was Terry saying to me, quite calmly, ‘Kathleen I’m really interested in this conversation. I would like us to resume it when you’re well enough.’ He must surely have suspected what was happening to me. He is a doctor and I was having a stroke. But he spoke the words that I so desperately wanted to hear.
Part of me thought, I’ll be back! We’ll reschedule the meeting and get Angelman Syndrome into the conference. Of course, that didn’t happen. But what did happen was also significant. His words reminded me that I was a human being and I had made a difference. I clung to them in the months after, and still feel warmed by them. He had observed, understood and spoken to me as a human, not as a medical emergency. In effect, as I read it, he had taken the time to say, Kathleen, you are still here, you are still Kathleen Jordan, and what mattered to you when you walked into this room, still matters. It has not changed. It has not been negated by illness, nor have you been negated as a human being. Don’t give up hope. You will be back.
As I was to learn, in illness, we are so often reduced to being the sum of our symptoms, tests and scans and not of our individual attributes and personhood.
With Terry’s words, I think a part of me felt it could let go. My burden, the message for Angelman Syndrome, had been handed over. But I was disappearing fast. I remember hearing an ambulance officer saying that they needed to get me into the ambulance straight away. And then in the ambulance, for that endless and confused few minutes, priceless kindness. I scarcely knew who I was any longer, and this person — 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