I hadn’t come to see her.
I was visiting another resident when the nurse asked me if I had time to review ‘the new lady’ who had been admitted the day before. I had a full day booked and was already running late, but the urgency in the nurse’s voice made me pause.
“What are you worried about?” I asked.
“She says she needs to go to the bathroom, but she won’t let us help her. She tried to get up to walk to the bathroom this morning, but collapsed back on to the bed. We think she needs to go to hospital but she doesn’t want us to call an ambulance.”
A week ago she had fallen at home, giving herself a fright. She had walked in to the care home the previous day for a short admission, hoping for a week or two of rest and to recover before returning home.
The look in her eyes as she gazed up at me when I entered the room stopped me in my tracks. I had never, in all my life, seen anything like it.
Fear, desperation, and something else that I could not name, all in one wide-eyed gaze. My heart sank. I took a deep breath, and asked for her permission to sit by the bed.
Her breathing was rapid and shallow. There was a sheen across her brow, the effort of trying to get enough air was taking it’s toll. Her skin was grey, her hands were cold, and her lips were blue. I held her hand and felt her pulse – so rapid and irregular I didn’t bother to count the rate. I sensed immediately that she was dying, and that the end would not be far away.
I suspected she had a full bladder that was causing discomfort. I lifted the bedclothes to examine her abdomen, and she panicked. I stopped.
She gripped my hand – hard. “Please…no…help…”, she said.
Her much younger sister sat on the other side of the room, looking worried and helpless. I asked her if she would mind giving us a few minutes alone. She left the room.
Her relief at being left alone with me was obvious. An immediate relaxation, slower breathing – but the fear in her eyes was still there.
She wanted to go to the bathroom, but could not walk. She did not want any assistance from me or from the staff. She declined to use a bed pan. She did not want help with toileting, or with personal care. At the mention of the possibility of a catheter, her fear escalated to something I had never seen before.
She definitely did not want a catheter. She was adamant that she did not want any medications to help with her breathing, anxiety and agitation.
I struggled to understand how to help this woman. I had run out of suggestions.
“What can I do to help you?”.
“Nothing…maybe…just…don’t know”, she said.
“How about I just listen, and you can tell me what is worrying you the most?”
I did not fully process what came next until after her death.
As she spoke while she struggled to breathe, I began to hear small pieces of her story – one so horrific that I could never have imagined it and one I will never forget.
A story of abuse, of trauma, and of rejection. A story of embarrassment, and guilt. A story of spiritual suffering. Of confusion. A fear of dying with an untold secret.
Her sentences were broken. The pieces of the puzzle came slowly, and made little sense at the time. The overwhelming theme was a person who had been the subject of decisions made by doctors, her parents and their church, which had caused untold physical and mental harm and incredible existential distress.
She told me of many hospital visits that included multiple surgeries. Her fear of catheters due to past attempts to insert them that had caused excrutiating pain. Of ‘cures’ and ‘punishments’ that had been imposed on her. She told me about her fear of taking any medicines that might take away her sense of control. She said it was all a secret. Even her sister did not know.
She talked about her faith, and her fear of doing something ‘against God’. She spoke of her guilt, said that she had ‘bad thoughts’ and that she was ‘not good enough’. She was so worried that she would die without forgiveness and was going to hell.
I assumed she had been sexually abused. I was right, and I was wrong.
After her death the last piece of the puzzle was discovered, and it all made sense.
She had been born with both male and female anatomy into a devoutly catholic family. The catholic church’s position is firm. One is born either or male or female, and this also applies to intersex people who have both male and female characteristics, and who are – in the eyes of the church – either biological boys or girls.
It has taken me many years to be able to reflect on this experience. My heart still breaks to think of a person so troubled and so imprisoned by a body that she felt did not belong to her. She had no sense of her own identity. No opportunity to explore her own sexuality.
She had lived a lifetime of being violated, stigmatized and tortured. A lifetime hiding in toilet cubicles in school and avoiding public change rooms so her friends would ‘not see’. A lifetime of not belonging. A lifetime of fear that her sister and others would find out. A lifetime of feeling lost, inadquate and helpless.
She was robbed of the chance to live life to the full, to be free and happy. To feel safe and secure. To love and be loved, to be intimate, and denied the opportunity to marry and have children.
My own sense of inadequacy, my frustration at being unable to manage her physical symptoms, my confusion about what I was seeing and hearing, and my struggle to make sense of it all, still play on my mind. I wonder if I could have done more, or something different.
She died a few hours later in the same way she had lived. Uncomfortably, restlessly, painfully.
But she died on her terms, having told her story and unburdened her heart.
She died having her experiences and feelings acknowledged and validated, being told that what she had endured was unfair and undeserved. She died being reassured that she was worthy, that she was not alone, and that she mattered.
It wasn’t ideal. It wasn’t what I would call a ‘good death’.
It was what it was.
