Despite a cruel and fatal illness, Sue Meeuwissen, who has died at the age of 38, campaigned to make public places smoke-free. Her death followed the failure of a double lung transplant she received six years ago.
Meeuwissen was born with cystic fibrosis, the commonest inherited disease in Australia which produces recurrent chest infections and poor absorption of food. Death usually occurs by the early 20s due to lung damage. Her parents were told not to expect her to reach adulthood.
Meeuwissen and the friends she made through hospitals and physiotherapy departments grew up with this expectation. But she recognised that her inheritance was effectively robbing her of life.
She rejected such a pre-death existence and took control of her life. She left home in Melbourne to live with her lover, then moved to Adelaide. Oxygen masks and repeated infections were regarded as inconveniences to be tolerated.
She wanted to live. Friends who were depressed or complaining always felt a bit guilty after talking to Meeuwissen, as she expounded on how wonderful life was.
She spoke as if being alive was a new experience. She went to technical college and studied business, and eventually set up a Web page design venture.
Though she was always in and out of hospital, it was always at her request and timing, much to the astonishment of those doctors who thought they knew best.
In the days when smoking in hospitals was frowned on but tolerated, she threatened to sue one hospital for making her health worse, and signed herself out.
She hated smoking. As she put it: "Smoking discriminates against me, because my lungs bleed and I can't go anywhere it occurs. I can't go to hotels or discos and sometimes not even to restaurants or shopping centres."
Some of her young friends with cystic fibrosis took up smoking. Meeuwissen thought they did so to prove that they were normal adolescents but the truth was that, as she said when she was 22, "they are all dead now".
Because Meeuwissen suffered frequent lung collapses, she was regarded as a bad bet for a lung transplant: the areas where the lung was stuck to the chest wall would bleed too much.
She persisted, eventually persuading doctors at Melbourne's Alfred Hospital to give her a double lung transplant. There was a problem: her new lungs were asthmatic. But it was a new life and her enthusiasm was unbounded.
She advertised for a partner, bluntly stating that he'd need to take a blood test to prove he didn't have herpes antibodies, as she was immune-suppressed.
And she remained as feisty as ever. On a trip to Sydney she went to a city nightclub, then sued when the smoky atmosphere inside forced her to leave.
"I want to sue them through anti-discrimination; I'm not going to be here long; I want to do some good," she said. The club was found guilty and fined, but the Human Rights and Equal Opportunities Tribunal did not demand smoke-free conditions, saying that would send the club broke. The result was that Meeuwissen could not return to the club.
She had an increasing difficulty with rejection of her new lungs and was back on oxygen. The anti-rejection drugs damaged her kidneys so she needed new transplants of them, too. Australia has a poor record of organ donation, and she was a low-priority case.
Meeuwissen fought on, in and out of hospital, hoping and arguing for a new life, while telling all friends how good it was to be alive. A couple of months ago, she realised her frailty and her diminished chances of getting the transplants and had a last party to celebrate being alive.
Her friends attended, then continued to get cheery emails that she was still going, with a risque joke thrown in.
She died peacefully in a Melbourne hospital.
It would be fitting to say that her legacy is a smoke-free society, and a better organ donor system. But it is not so.
Even when she was being admitted to hospital for the last time, she was done further damage by people smoking at the emergency entrance. She had achieved many of her goals, but there is still much to be done.
Meeuwissen is survived by her parents, Irene and Peter, her brothers, Bob and William, and her sister, Jane.
- Arthur Chesterfield-Evans
Daily Telegraph London (9.8.2000) and Sydney morning Herald (29.7.2000) from http://members.cyberz.net/mikelinka/Meeuwissen.html