Health Experience: ‘I started focusing on the difference between not wanting to die and wanting to live’

It was my own fault: I was staying at a damp cottage in Co Sligo with mould everywhere. I thought I could just replace the pillowcases and I’d be fine, not realising how damaging it can be to breathe in mould.

But I felt weak travelling back to my home in London, and the next day, I couldn’t move. I never had a house visit from a doctor in my life but there were two within hours, and I had to be hospitalised.

It took the medics a long time to reach a diagnosis of interstitial lung disease, which is nicknamed “farmer’s lung”. Farmers sometimes breathe in mouldy hay, and if you have an allergic reaction it can trigger a condition known as fibrosing alveolitis. Basically, you can’t process oxygen properly because the alveoli are scarred and won’t regenerate, so the oxygen levels reaching the bloodstream are barely enough.

The prognosis was two to eight years. Just reading about it online frightened me. At that point, I was a 59-year-old teacher, acting in my free time, and it honestly felt like the zenith of my career was on the horizon. Not only was I told that I would never teach again, but the prospect of not being able to sing or act any more devastated me.

The first week in intensive care, not being able to leave the bed or contact my family, was particularly tough. I remember saying to someone on duty: “I’m doing my best to stay positive; just looking around and thinking it could be worse.” She replied: “Well, I don’t want to alarm you, but you’re number two on the critical list.”

In the next bed was a man about my age who seemed to be suffering from a similar problem after working in a factory with chemicals, although apparently his lungs were better than mine. He kept saying: “My life is over. I’ve nothing to live for.” The staff told him he’d be in a wheelchair, live on oxygen and lead an otherwise perfectly normal life.

Letting go I kept reassuring him, but he would just repeat the same thing for days until finally I gave up. One night there was a kerfuffle around his bed and when I woke in the morning, an orderly confirmed that he

had died. She said they often see people willing themselves towards death, that they can kill themselves by just letting go.

I was determined not to go down that route, but I needed help. So I asked my husband to go through my contacts and call every single person he thought might inspire me to leave that bed.

My friend Paul brought in a great picture of me backstage at my local theatre, telling me to keep it close and to think, I’ll be there again.

Seeing that man willing himself to death made me realise you have a certain amount of mental say-so. Obviously if you die, you die . . . but if you’re determined not to, I think you can pull through.

As soon as I stabilised, I begged to leave until the staff finally gave in. At that point, I couldn’t walk and I had gained weight from being prescribed steroids.

Eventually, I convinced my school that I could return to work but the week I was due back, I also landed a part in a play. I tried to juggle both without telling anyone. I arranged three hospital appointments that week just so that I wouldn’t have to teach on the afternoons of my performances. I’d rush off stage, slam on the oxygen and get right back out there.

Everyone thought I was acting, not realising I was genuinely unable to breathe. Even though I was forced to retire shortly afterwards, I fulfilled the promise that I had made to myself.

Psychological impact

Twelve years on, I’m down to breathing with 26 per cent of normal lung capacity. I need an oxygen supply 24 hours a day.

The biggest problems have been continuity of care and the fact that there’s no provision for the psychological impact of having a disease that can only be controlled – and, in my experience, controlled experimentally.

Three years ago, I had pulmonary hypertension and was feeling extremely anxious. Having survived the eight-year prognosis, I started thinking: “That’s it now. There’s nothing left.”

But I started focusing on the difference between not wanting to die and wanting to live. I’ve embraced everything I was told might help – acupuncture, watching my diet, hypnotherapy – and have lost four stone in the process. My heart is in much better shape, too.

I’ve gone from being wheelchair-bound to doing exercises in the local health club, on oxygen, with everyone staring at me as if they’ve never seen anything like it in their lives. And, as sceptical as I was, visiting Lourdes changed my life because there’s no way you can feel sorry for yourself after that.

Although my lungs haven’t improved, the rest of me is doing well. Having a huge support system of friends and family is crucial.

I realise that a bad chest infection could be the end of me, but I’ve learned to dispel the negativity that comes with facing death.

I don’t live with that fear any more. I’ve still got things I can do, and people I can help, so I don’t feel like I’m going anywhere. I’m just grateful for what I have. Every day is a bonus.

- In conversation with Cian Traynor