Autoimmune Encephalitis following Measles – Ailís’ Story

I am a classical composer and theatre writer from Ireland now based in Lancashire. I contracted encephalitis at five years of age. It started with measles, followed immediately by chickenpox and then encephalitis. I was ill for a long time, missed a lot of school and was cared for at home by my Mother (writes Ailís Ní Ríain)

It was a Christmas Eve in the early 1980s when I was at my lowest, like a rag-doll propped up on the sofa. The doctor visited late that night, reluctant to have me admitted to hospital as I was contagious, he told my Mother: “If she makes it through tonight she might well survive.”

My Mother sat with me all night. She later told me how she kept her eye on the clock and prayed and willed me to stay alive. She believed if I made it to 6am on Christmas morning that I would survive and she was right. I did survive, but I was gravely ill. It was to be almost a year before I was well enough to return to school.

I have vivid memories of some of my experience of encephalitis; the frustration of losing my ability to walk and to speak. The frustration of my brother that I was ‘still sick and still lying on the couch!’, an understandable reaction from a sibling. The intense dreams and hallucinations – I would see objects floating in the air which I was always trying to touch.

My Mother wanted me to return to school. She felt passionately that I was better off in class, around other children. She wanted to reintegrate me. It was a slow process. At first I attended school for just one hour a day, slowly she built this up over the months. My teacher didn’t seem convinced that I would ever recover as I would spend most of my time lying with my head on my desk – listless and weak.

Thanks to my Mother’s care, I made a good recovery. I sustained a hearing impairment from encephalitis; I wear hearing aids and lip read. Despite the difficulties this has presented – I now work in sound and music as a professional composer.

Of course, I am somewhat limited in what I can do however, this has meant my approach to composition and indeed performing (I am a pianist) has been highly influenced by experience, I do things differently to others. I found a way to make it work somehow. My memory, ability to concentrate and to retain information has generally been far below my peers. This combined with my hearing issues meant my experience of school was poor. Academically, I barely made it through.

Despite this, I persevered and have since graduated from university with postgraduate degrees, diplomas and more recently was awarded a significant award which both acknowledges my achievements in professional music and invests in my ongoing development.

Although it was a very difficult time for my Mother and myself, my experience of encephalitis has made me who I am. Having a serious illness in childhood and the isolation it brought encouraged an independence of thought and creativity. While the long-term effects do have their challenges, I have been lucky enough to know from a young age what I wanted to do in life. A determination to get well and not let my experience of the illness get the best of me means I have managed to carve out a modest living doing what I love the most.”

Visit Ailís’ website