Sitting, and waiting seems interminable. Living so acutely in the here and now as we are, it is all we have ever done and all that we ever will do. It has become our raison d’etre in a world governed by unreality. People come and go, phones ring quietly, tears flow and desperate hands clutch. Occasionally within this there is a shared anecdote and laughter. The waiting goes on and we have a cup of coffee.
The changes are so subtle that you don’t really notice them in that whispered room. When the ragged breathing changes, it comes with shocked disbelief. Not now, it can’t really be happening now. Mightn’t she hold on just a little longer? An airborne daughter is still mid-flight. The final breathe is whisper soft, and then there is nothing bar the sobbing. No final words of farewell – just nothing but still indelibly recorded in the collective memory.
One year ago today, my sister died. This was not an easy or kind death. It was a drawn out process over two years, with much of it abominably cruel. There was a good period in the middle of her illness where she responded well to a drug trial, surviving longer than expected as one-by-one, others on the same trial did not respond so well and fell by the wayside. At the official end of the trial, there were only two participants left including her, and the drug company agreed to keep supplying them with the drug, for as long as there were positive indicators.
The company demanded a continuation of the 6-weekly scans, giving a level of radiation exposure that could precipitate other cancerous conditions over time. She protested but the response was firm with the unspoken inference. You are terminally ill anyway, so the level of scans is of no long-term consequence. She was in a desperate fight for her life – they were concerned for the raw data and clinical observations that her condition was providing.
That good period whilst the drug was working was super-charged. She joined a gym and pumped weights. She returned to work and resumed also her presentation and teaching activities, travelling around the country to deliver training. She attended seminars and on one memorable occasion as a guest speaker. It was a conference for palliative care specialists and it featured a videoed interview with my sister on the palliative care process from the patient’s perspective but with a medical specialist’s understanding. I haven’t seen it yet but I gather that it is hard-hitting. She took questions from the floor and then at the end of the day, in response to an impromptu invitation, gave the closing address that brought the attendees to their feet.
Importantly, she continued her work in Forensic Medicine, focusing on the protection of those who have been subjected to sexual violence. Even while desperately ill, she insisted on appearing in court as an expert witness, knowing that without her evidence a perpetrator could walk free. It was the last time that she left the hospital under her own steam.
We have established a scholarship fund under her name, with the recipient to be a mature-aged female medical student entering third year at the University through which my sister undertook her training. I took part in the interview process to select the first recipient and this Friday we have a Memorial Dinner for colleagues and friends, at which the recipient will be introduced and will receive her presentation. The legacy lives on.
As sisters of course, we didn’t always have an easy relationship. She was a few years younger than me, and we were chalk and cheese. I was the adventurer and risk-taker and learnt from my mistakes – eventually. She was the considered one, conservative in her outlook who chose her battles carefully. She was emotionally fragile and very quick tempered, and I was resilient and rolled with the punches. She was also the bright one and needless to say, the comparisons made by others rankled and were hurtful in our growing-up years. I kept my distance as much as possible and went my own way.
Ours was a tenuous relationship that fortunately improved over time, and the advent of children had a bit to do with that. Hers came first and then my son, and she insisted at the last minute on flying interstate to be with me during the birth so that I did not have to be on my own. She gave me lots of support in relation to my son. When our mother died, she seemed to draw closer to me as well. She had always been mum’s girl, and missed her dreadfully. Of course we all did, but my sister was especially devastated.
It’s weird what you find out about people after they die, but it was so clear that my sister had a whole different life to that which was known and understood by the family. Her reach and influence in the area of women’s health and well being was far greater than we realised, as was evidenced by the number of people who attended her funeral and the number and diversity of speakers. We knew in general, but still listened in amazement to those who spoke of the differences that she had made to the lives of others.
One patient was so enthralled by my sister that she became a stalker, primarily of her but peripherally of other family members as well – anything to build up the knowledge base about my sister. The patient suffers mental problems that probably mean that she will never work or live independently, but with my sister’s mentoring she acquired the confidence and managed to commence a degree in politics at a local university. This woman pops up everywhere, and I know that when I visit the grave today, there will be a bunch of flowers already there from the patient. One lesson that I have learnt is that we don’t ‘own’ other people, not even our immediate relatives. Everyone else retains their own part of them.
The first anniversary is always difficult. This morning, which the day was still fresh I picked a posy of soft roses and lavender from my garden. I might add a couple of sprigs of Rosemary for Remembrance, and shortly I will take them to my sister for a bit of a chat. She has a beautiful plot in the hills, overlooking the valley and so peaceful. It is a haphazard cemetery where people have planted their favourite flowers and creatively built their own headstones and grave enclosures. She would be happy with that.