A view from within
“His family were his friends in uniform.”

Five days after my 75th birthday, in 2020, two events changed my life forever. The formal description of these events as ‘treatment injuries’ hardly conveys the reality of the pain and disability I have since lived with.

On 17 May, 2020, I rang 111, thinking I might be having a heart attack. At North Shore Hospital, they decided to do an angiogram to check my heart. I did not know at the time that I was allergic to heparin (a blood clotting preventative) and all I can remember during the procedure is the word “abort” being shouted. I was having a stroke, a bleed on my brain. This was a known risk of angiograms.

The next morning, the doctors’ round arrived and the specialist asked how I was. With enthusiasm I pointed to the opposite wall saying, “Look I’m helping my mother take morning tea to the haymakers on the farm. We have a billy of tea and some hot scones.”

I wondered why the doctors looked puzzled, as the specialist asked if I could see anything else. I pointed high above the opposite bed saying, “Look, that’s our party-line telephone dangling up there in space. One of my brothers and sisters must have left it dangling, because someone listens to our conversations. Our ring is long, short-short, long.”

The following morning when the doctors arrived, I told them it was comforting to watch the men
bailing hay because all the bales scattered across the hillside. I also mentioned the beautiful, soft, fresh grass that had grown on the floor of the bathroom overnight. It was delicate but thick and luxurious to walk on.

Twelve days after the bleed, the haymakers, the phone and the grass had disappeared, and I was expecting to go home. When the specialist came, he explained that the bleed on my parietal and occipital lobes had caused my hallucinations, because the bleed affected my visual field. Both my occipital lobes (at the back of the brain) and parietal lobes (behind the frontal lobes) had been damaged. They had to keep me in hospital to ensure the hallucinations had disappeared even though they had ceased five days previously. The day before, one of the nurses had presumed I was still hallucinating when there was an altercation over the wrong meal being provided for me. When I recall this experience, I am reminded of the terrible fear that gripped me when the nurse refused to
believe me.

The hospital where my first stroke occurred did not have a Neurology Department, so it was common practice for MRIs to be sent to a larger city hospital. The results were yet to be reviewed but on the day I was discharged, the specialist gave me an appointment to come back in three months.

The next day, I received a phone call from a nurse at Auckland City Hospital. “You need to come immediately for a catheter angiogram,” she advised. “The senior specialist has viewed your MRI and you may be about to have a brain haemorrhage.”

“No,” I replied. “I’m not coming. The other specialist told me to wait three months.”

The nurse phoned every day urging me to come. I kept repeating my position, not until I had spoken to the specialist who authorised it. She told me that was not possible.

In the meantime, my GP had tried to get hold of Mr Schweder, as she knew him well. She was told he was on extended leave but had reviewed my MRI with the multidisciplinary team before leaving. My GP was concerned. She felt I should have the procedure because of the status of the specialist. I deeply admired my long-standing GP, so reluctantly and against my intuition I accepted her advice and booked the procedure.

Dr X did not have authority in Mr Schweder’s absence and yet he asked a young colleague who had just got his fellowship to do the procedure. When it was under way, I experienced excruciating pain and shouted, “the pain, the pain.” I again heard the word ‘abort’ and sometime later found myself in a ward.

The junior doctor came to my bedside the next morning and sat down. He was visibly upset, and empathetic. With tears in his eyes, he said, “I am so sorry. I didn’t think something like that would ever happen on my watch.”

Nor did I stop to consider that my busy social and professional life would become unfamiliar to me overnight. I was out of my depth as I grappled with bewilderment. My fiercely independent nature resisted the dependence facing me. Nobody knew about my medical treatment injury because I didn’t tell them. I lived alone through two lockdowns in Auckland during 2020 and 2021. I was not able to drive. Facing extreme isolation, I could no longer play the piano or use the computer to stay connected with family and friends either. I kept dropping things, forgetting my left hand didn’t work.

There was a large punnet of blueberries in my fridge, from before I had a procedure at the hospital. One morning when I picked up the punnet my left hand dropped them. Blueberries scattered everywhere. It was a shock to realise I couldn’t pick them up.

These events meant I could no longer be active in the community. It had to be goodbye to my marriage and funeral celebrant work, or involvement with New Zealand National Speakers, the Authors Society or the school community. My daily project of implementing personal playlists into rest home care slipped through my fingers. Despair gripped me.

Extracted with permission from miss adventure: healing with music by Pauline Grogan.