Helen

Helen was a pleasant woman in her 40s who had been admitted to the neurological ward for tests. I was a diversion in an otherwise long day. I arrived with my bag of language tests and started setting up to begin.
That year I was working as a research assistant. My supervisor would arrange with fellow physicians to ask patients if they wanted to participate in a research study about language understanding. I was to obtain patient consent and conduct the tests. The research was interesting and working with the patients rewarding. There was plenty of time to chat and the patients seemed to enjoy the experience.
Helen was younger than most of the subjects I had seen thus far. She told me she was from a small town and had two teenage children. As we worked we exchanged details about our lives. I noticed an abnormal twisting movement in her hands and a slight tremor in her voice. I asked whether a family member had travelled to the city with her. She paused and told me she had come on her own. I expressed that it must be hard to be alone at such a stressful time. Quietly Helen said, “It is better to be alone right now. Everyone at home says I’m crazy. Maybe they’re right.”
Helen told me that for the past three years she had been depressed and anxious. This had coincided with her separation from her husband. It wasn’t friendly. She had started having trouble with her voice and experiencing “mood swings”. She was called hysterical and prescribed antidepressants. Everything was attributed to Helen’s difficulty dealing with her family problems. Her children were spending most of their time with their father. They didn’t know how to help their mother,, and found her sudden bouts of irritability or sadness disturbing. She could not reach any agreements with her husband and divorce seemed inevitable. Whatever self confidence Helen had was being slowly eroded. She told me she had trailed from doctor to doctor, certain there had to be a solution, certain what she was experiencing had a physical cause. Helen described herself as a normally cheerful, confident person until this illness had started. None of the local doctors seemed to have anything to offer her. Uncertainty began to grow in her own mind, maybe they were right. Maybe she was crazy. She then started to have some trouble walking. She would lurch unpredictably. “You can imagine what people in a small town said about that!” said Helen with some humour. Finally she was referred for tests. Helen said, “One way or another I will know later today, then I’m going home to see my kids.” We finished the testing and I said I would stop by to say goodbye tomorrow before she left for home.
The next morning I saw Helen in her street clothes getting ready to leave. She was radiant. “Did you have good news?” I asked. “The best”, Helen replied, “I’m not crazy!” She continued, “It turns out I have Huntington’s Disease. It explains everything for the past three years. I knew I was right.” I was silent. I did not know what to say in the face of such a devastating diagnosis. Helen didn’t notice my reaction. She told me that the doctor had explained everything and she knew it was going to be really hard but for now she was just so relieved. She said that doubting her own knowledge about herself was the worst thing imaginable. Now she would go forward, renew her relationship with her children, and deal with her illness. Helen smiled and left.
When you work with adults you sometimes get to share some important and private moments. You hope you can listen well, offer acceptance, help. What to say, how, when is not always clear. Often our patients end up being our teachers. I still remember Helen.