“I have made an attempt at a story about Karen’s mental illness and our family’s loss of her. I could have written it several ways but decided it might be most helpful just to do it factually.” Lorraine Johnstone, Karen’s mother
We thank Lorraine for so graciously sharing Karen’s story.
Her mental illness showed itself when she was 15. Her breast cancer diagnosis came when she was 35. She lived for three years after that, and we were with her when she died on the 8 October 2016.
During the early years of her life, we noted that Karen was quiet, but she could use her voice and make as much noise as her brother and sisters when she wanted to. It was when she started school that teachers and others told us that they were concerned about her shyness and lack of socialisation skills. Despite desperately wanting to have friendships, it didn’t come easy for her. A simple conversation was often hard work for her.
By the time she was 15, she voiced to us how she felt like a flower growing in the shade. We made all kinds of efforts to help her to have the social life that she craved. But it was hard. Gradually it dawned on us that she was probably depressed. However, it wasn’t all of the time. We felt that she was just a quiet person, and we would be best not to hassle her.
During year 11, Karen was invited to a girls’ leadership camp. She was eager to go because she longed for greater confidence with girls of her age. We were never told what transpired at the camp, but the report from the camp counsellor said that Karen was in urgent need of help for her mental health.
We contacted the Child & Adolescent Clinic at the Austin Hospital and things moved quickly from there. We were invited to several family meetings at the Austin, but they were not helpful in giving us any information as to what Karen’s problem might be and how we might be of help. Karen was fairly silent at home. The depression was much more obvious, but we were glad she was under the care of a psychiatrist.
Just before her 18th birthday, Karen left home. We had no warning, and we had no idea where she had gone. After 24 hours, she phoned and said she would not be coming home again. Years later she told us that she was frightened that she might harm her siblings if she stayed.
For the next 17½ years, until her cancer diagnosis, we had almost no contact with her and none of us knew where she lived. When she did make contact, it was on her own terms, and the meeting place was normally in the city in a public area. During these years, her wellbeing was of great concern to us. We knew almost nothing about how she was faring. She did not phone or email.
During those years, I made contact with the Wellways Family Education Program. Listening to the stories of other families provided me a safety net to be able to expose my grief and loss. There was a difference between most of those families’ experiences of a mental illness and what our family experienced. They were living daily with the illness and trying to weather the storms of hospitalisations, medications and visits of the Crisis Assessment and Treatment Team (CATT). We had none of that. We just had her ‘goneness’ and the constant worry as to her safety.
Karen contacted us again when she was diagnosed with stage IV breast cancer and was given only a short time to live. We learned then that, as a result of a crippling paranoia made up of fears that she was being pursued by evil people who wanted to kill her, she had moved house 14 times in 17 years. She had also changed her name many times in order to evade her pursuers. On a positive note, we learned, too, that she had made many friends and had been able to pursue music and art as well as doing volunteer work that was meaningful to her.
Because the cancer had moved to her spine, Karen was unable to walk and needed to be in a high-care nursing home. In those three years, despite the pain of the cancer and the treatment that made her sick, she experienced a sense of safety and peace that had eluded her for many years. Sometimes her fear of persecution would get in the way and her cautiousness would return, but as a family we were able to rebuild relationships with her and she with us. We will be forever grateful for those three years.