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Celebrating Sue

By VICTORIA BUTTON

Jun 14 2000 04:50:42

Photographs by Michael Clayton-Jones

BLUE playdough. A pine cone. The Kama Sutra. A needle and thread. A list of names. A red feather boa. A no-smoking sign. A kite. These things symbolise Sue Meeuwissen.

Her friends and family laugh, and verge on tears, as they tell stories and present the objects they have brought to a gathering billed as a "celebration" of her life.

And Sue sits in the corner on a red glitter cushion, looking like some sort of Eastern goddess, butting in to argue their versions of events - and to remind us she's not dead yet.

Sue was given the bad news just over a fortnight ago. Her double lung transplant, performed six years ago because of cystic fibrosis, was in a tailspin of infection and rejection after a passive smoking-prompted asthma attack. The bad news was that doctors had turned down her appeal against their decision not to offer her another transplant.

In other words, she was dying.

She telephoned friends. One, Peter, horrified by the idea of Sue missing out on tributes during her funeral, suggested they gather to celebrate her life.

And so it was that on May 31, a small crowd gathered at a solid suburban home in Mount Waverley, a place of piebald 1970s carpet and ageing family photographs, a place where Sue grew up, in part, and where she intends to die.

In the lounge, people sip wine and beer. They eat salami off toothpicks, dialled-in pizzas and mini sausage rolls proffered by Sue's nieces, Elizabeth, 11, and Samantha, 13. Some flip through her media clippings file: "Sweet fragile Sue" (1977), "Champion is winning a battle" (1983); "Prisoner of a smoke screen" (1990); "Sky's the limit for lung swap patient" (1995); "Lung victim sues nightclub" (1997); "Sue's victory for fresh air" (1997).

It's quiet. You can hear the effort in Sue's breathing: a rapid gasp in through the nose, held and expelled through pursed lips. Her deepest breath is less than one-fifth of normal. When she coughs, it's a deep, desperate, exhausting sound.

 

The atmosphere is cheerfully tense as everyone poses for a photograph. "Cheese!" someone sings out.

"Condoms!" someone else says. A third points out that Sue is surrounded by men - of course. After the photo, a guest leaves. He has to catch a plane home. He says he'll see her later. "No promises," she replies.

 

People sign a rainbow kite to fly in her honor ... later: "Proud father of Sue"; "I love you so much"; "Continue to fly high, my darling Sue".

 

Sue needs an injection, flirty as she lifts her red dress to expose a thigh. Jokingly, she reveals a surgically implanted drug portal above her left breast.

 

A home visit nurse is uneasy. "What's this?" he asks. A party? A wake? A funeral? A celebration? He wonders whether to revive Sue if she arrests tonight.

 

A snippet of conversation from Sue, over on a couch, to a man whose hand she is holding: "Now I know I'm going to die."

 

There's talk of the reconciliation march, the weather, this and that. There's also the small-talk staple: so how do you know Sue? "We both f---ed a physicist," says a red-eyed friend in blunt reply. She says, pointedly, he is not in attendance.

 

And how do I know Sue, her friends ask? I don't, really, other than through her campaign to keep public space smoke-free. Smoke in public areas has kept her housebound for long periods. Sue rang to ask what I would be doing to mark World No Tobacco Day. She told me she was dying - and ended up inviting me.

 

SUE is carried to her bedroom for the formal part of the ceremony. They decide against a firefighter's lift in favor of a cradle lift. The machine delivering her oxygen is moved with her. She's attached to it by a clear cord that she can't escape.

 

The bedroom is chilly, despite the crowd. A friend, Wade, drums quietly on a tribal drum. There's a tiny indoor fountain at the centre of the room, surrounded by a wreath of cloth. A cane star hangs high above it, threaded with fairy lights and decorated with falling red streamers. There are Christmas lights on one wood veneer-panelled wall.

 

Sue is in a corner, wearing a tinsel wreath, giggling at a camera's flash.

 

A friend, Jennifer, welcomes us to this celebration of Sue's 38 years of joy and struggle. Her partner, Peter, thanks those who have travelled interstate. There's recorded guitar music. Peter asks us to relax and to concentrate on breathing. "As we breathe in, I'm breathing the same air Sue is breathing," he says. "As we breathe out, we become connected to everyone on the Earth."

 

Sue has her eyes closed, snorting down the oxygen-enriched air in her tube, still breathing, breathing, breathing.

 

We are a diverse crowd, including people of many ages. At times there is an undercurrent of awkwardness. Peter invites those in the room to break the silence with stories of Sue. Here, paraphrased, are some of them:

 

Ruth: I've got a photo of Sue wearing a boot on her head. I can't remember why. We were in the Mount Lofty Botanic Gardens in Adelaide, maybe nine months after Sue's transplant. We had a picnic lunch. It was just the best day.

 

Simon: I've known Sue for two years, but only met her twice face to face. (Sue: No, there was also when you dropped off the bowling stuff.) I was a young turk in the ALP and a troublemaker. After knowing Sue, I'm now a member of the Democrats and I'm slightly more calm. Sue has been a mentor and close friend. Thank you, Sue. (Sue: When you get into parliament one day and you make your maiden speech, you can mention my name.)

 

Meredith: Almost all the women here know about your sex life! I have brought the Kama Sutra.

 

Wade: Sue is one of the only people who has made me blush. I won't go into explaining that. (Everyone: Go on.) OK.

 In hospital, Sue was a bit frustrated with the scenery in the ward. I brought a lot of magazines for her to read, all pornographic. But two-dimensional wasn't enough. Sue insisted I draw the curtain and give her a strip tease. Given the situation she was in, and being a devoted friend, I

obliged. So I brought my shirt with the Velcro fastenings today.

 When I met you as a journalist, I couldn't believe you existed. Your strength bowled me over and made me get my act together. You're a beautiful woman. You're a very sexy woman, too, and you know that. I'm going to miss you. (Sue: Physically, physically!) In many ways. When I think of you my heart is gladdened. When I think of you, I feel closer to my path. I have seen the courage you have shown following your destiny.

 

Marge: Once you rang me and said, "Guess what? I'm going to Paris." You proclaimed you were going to make it to the Ninth World Conference on Smoking or Health in Paris to give a paper. You had great courage and somehow got there. Your love, commitment and drive have been among the most inspiring things in my life. I bring only my heart. It's yours.

 

John: One morning, about 1.30am, the phone rang. It's a bad time to get a call if you have children who drive. My wife, Julie, answered the phone. I heard her say, "Yes, of course we'll pray for you." It was the morning of Sue's transplant, Mother's Day. The uncanny thing was I had never met

this girl, just corresponded on the e-mail or with the occasional phone call. But somehow she found in that moment the need to ring.

 

Another Marge: Once, before Sue's transplant, I helped her shower. She could barely stand. She looked like something out of a concentration camp. She was struggling to breathe - but she was eagerly telling me all about her latest ventures in the passive smoking lobby. It was the most

poignant thing. I was like Sue's substitute mum in Adelaide. She would talk as I sewed. I was honored to hear the sort of things women don't tell their mothers. (Sue: Good entertainment, hey?) I have brought a needle and thread to symbolise her life because it's drawn so many people together. Sue, I have heard about almost all of you. I love you.

 

Amy: I've known Sue since she was 16. She went out with my son Karl for a while. She would come to my place and clean the cooker. I'll have to get you back, Sue, to do it again. After the transplant, I visited Sue in hospital. I can still see her. I'm a nurse but I've never seen so many tubes in one person. She could hardly talk but she was trying really hard to tell us what had to be done. She struggled very hard. That fighting spirit is within her. It's just her own efforts that really pulled her through.

Sue, I know you felt we were there to support you but you had to go through it all. As a feminist, I admire you. We need more women like you, Sue. I also admire your parents, Irene and Peter. They need more than the Nobel Prize. (Sue: I wasn't that difficult.) You were pretty tough at times.

Your spirit will go forever. It's lovely to know you, Sue, keep going.

 

Anna: I'm not used to talking around Sue. Usually, she talks. (Sue: Not always. I'm getting an interesting reputation tonight.) Sue's been a good friend of mine. (Sue: I'm not dead yet.) Has been and is a good friend of mine since 1987. (Sue: 1989) OK, the middle of 1988. We were doing a

Kubler Ross workshop. I gave her a muffin, not knowing she didn't eat things made by other people. She thanked me and put it in her pocket "for later". She probably fed it to her dog. At times, I have been a bit slack with our friendship. But the answering machine always goes and it's Sue

asking where I am. Sue, I just love you being in my life.

 

Jennifer: I brought this red feather boa to celebrate your womanliness. I saw it and I thought about you.

 

Dany: Sue was my first friend in Australia when I came from England. I phoned around to get a uni study group together. The first thing Sue said was, "Do you live in a smoke-free environment?" I've brought a no-smoking sign.

 

Sarah: We met just out of high school, at uni. Sue was a bundle of energy and intelligence. This, I thought, is what real life is like. I remember feeling quite cranky later to discover the world wasn't quite as much as Sue.

 

Sue's friend, Sue: I have brought blue playdough. Sue always had a bowl of blue mucus, which I would help contribute to, when we came here after school. We'd talk about boys. Sometimes Sue would be hanging upside down to drain her lungs, but she would still talk - she would never shut up! Some of the wildest times in my life were with her. (Sue: Not including any sex.) We were complete dags. We still are.

 

David: Both Trish and I knew Sue at Huntingdale Tech. I've brought a list of people affected by Sue... (Sue: Blast from the past!) Sue had a fairly hard time at tech. She always acted as if she had no disability. People didn't know how to cope with her courage or attitude to life.

 

Trish: I've brought a pine cone for the many happy hours we spent sitting under pine trees having deep and meaningful discussions. You were my best friend then. (Sue: Thank you. That's an honor.) You love ferociously. You're ferociously loyal and you go ferociously after what you believe in.

(Sue: It's a gift that you're here after only finding out about my existence still on this planet yesterday.)

 

Sue's mother, Irene: When Sue was born, I had a vision. I told the hospital matron she was a baby with a special purpose. It's been achieved, even though she doesn't always think she's achieved it. She has been a strength to all of us. I believe in eternal life. To me that means memories of Sue will go on forever because we will pass them on. Thank God for all of you and our blessings for all of you.

 

SUE speaks, between the offerings of her friends, clearly and at length, as though she's been saving the breath. Here, again paraphrased, is what she said.

 

There are a lot of special people in my life here. There are also friends who are not here, who couldn't make it or who I couldn't invite.

 

The position I'm in is incredibly luxurious. I know what's happening to me and there's lots of good love around. I want to prolong life as long as I can. I have been near death so many times and incredible physical suffering. Suffering I can do. I don't like it much, but I can do it.

 

The true essence of my existence, I know, is love. I'm not going to be around physically as long as I would like but you will all continue. You guys can give honor to my struggle and spirit, but also to yourselves. Be an active person responsible in your own lives. Live life and do it well and do that extra step in honor of my life spirit and in honor of your own. Don't just be a zombie and just exist. Life is precious and I am thankful.

 

Don't just exist. Live and do. Be responsible for your own life. Fall down, get up. Fall down, get up. Then you can go to sleep with a clear conscience and sleep easy and happy and thankful.

 

Where people smoke matters. Environmental tobacco smoke could be transformed into a non-issue if people really did something. It's basic stuff, clean air, like clean food, water and soil. I don't think I will live long enough to finish my passive smoking work but I still want to do more. When I go, I will know I have lived a very, very happy, full life.

 

Sue is holding niece Elizabeth's head on her lap, stroking her hair, breathing. Later, I find out she had dearly wanted a child of her own.

 

Near the end of the gathering, Peter starts a song, and confesses he's been practising - but hasn't yet made it to the end without breaking down. This time, people join in. They sing The Rose and the overworn lyrics seem appropriate for once: "...and the soul, afraid of dyin' that never learns to

live".

 

Sue's brother has quietly slipped out. She demands someone find him and bring him back. He returns.

 

Everyone joins hands and, at Peter's suggestion, "throw" words into the circle they form. "Love," Sue starts off with a cackle of laughter. There are serious words. Hope. Honesty. Unearthliness. Passion. Strength. There are joke words. The word "word". Someone says "more words". Eventually, the flow stops and there is silence.

 

Then the woman who's been lauded for her life and her spirit confesses quietly, "There are physical limitations." The way she says it sounds like it's an idea she's not quite used to. No one has a comeback.

 

Her friends end the night drumming to her. We can hear it as we walk up the paved brick driveway on to the street and into the night.

 

Postscript: Sue has been based in her bed, as she puts it, since the gathering. She has accepted she will never see the lounge room again. It took her six hours to recover from her last shower. Her condition varies. She describes herself as well, but her body and lungs as dying. She's

planning a new passive smoking action, but won't disclose the details. She's hoping people who knew her in the past will get back in touch if they read this. The last time we spoke, she joked that when the doctors say she's living on a knife edge, she envisages it - and hopes she's got her legs together.

 

This story was found at: http://www.theage.com.au/news/20000614/A3162-2000Jun13.html