More than words can say

[kdwhite]

http://news.scotsman.com/features.cfm?id=639902005

WHEN Ulla-Carin Lindquist was dying, and had lost the power of speech, she and her 23-year-old daughter, Ulrica, had to find other ways to talk. Sometimes, Ulrica would hold up a hand-written alphabet and point to letters until her mother blinked. But sometimes, when it was just too laborious and tiring to talk any more, they found other ways to communicate. Ulrica would lie on the bed very close to Ulla-Carin and sniff like a little animal, drinking in her mother's scent. The reality, though, was that the roles of mother and child, of protector and dependent, were reversed: it was Ulla-Carin who was helpless; Ulrica who protected.

On her 49th birthday, Ulla-Carin had done headstands and backbends to check her suppleness and co-ordination. She was always running and exercising. On her 50th birthday, she was told she was dying of ALS, a rare and aggressive form of motor neurone disease. At first, the only sign was her drooping right hand. Gradually, her fingers became stiffer. When she woke in the morning, her hand would be clenched tight, like a closed flower head, unable to open out.

Over the next year, her body simply ceased to function. Ulla-Carin was not used to dependency. She was a newsreader on the biggest news programme of Sweden's main television channel, a woman who juggled home and career and wanted to excel in both. An organiser, a perfectionist, someone whose demands on herself were higher than anyone else's could possibly be. "She was a career woman, so I think it was a conflict for her sometimes," says Ulrica. "I think she was a typical woman of our times."

Later, Ulla-Carin would wonder if her lifestyle had caused her illness. "Nobody knows why people get ALS, but I think that my mother thought she had so much stress in her life, being a career woman, being known by everyone around her, the mother of four children who also wanted to be a perfect wife... And I think she thought she became ill because of all that stress. She wanted to achieve everything at a high level. Everything had to be perfect all the time; she was a control freak."

When she finally lost her speech, it was yet another irony of a cruel illness. Ulla-Carin had a soft, warm voice, a distinctive sound that had taken her into radio before television. ALS made her the communicator who lost her voice; the organiser who lost her independence; the control freak who lost control. But what she did not lose was her inner self. "I am not my body," she wrote in Rowing Without Oars, her memoir of her final year. "I am in it. It is sick, but my spirit is healthy."

The essence of what she was endured. It endured even when she could no longer walk or talk or eat unaided. When her family looked at her they had no difficulty in looking beyond the physical wreckage of her body and finding the woman they knew. "It was so clear that the brain was perfectly fine," says Ulrica. "It was obvious for me that she was there, just as it was obvious for me when she died that she wasn't any more."

On the day she died, Ulla-Carin still had things to say. She no longer indulged in small talk. Her illness had made her more direct, and now she only made the effort to say things that were important. Ulrica held up the alphabet for her mother to spell out her message. Y-O-U, it began. A-R-E. Ulrica watched her mother's eyes, waiting for the blink that told her when to stop at a letter. W-O-N-D-E-R-F-U-L. "That was the last thing she told me," says Ulrica. "You are wonderful." It was, in its own way, a triumph: the message of a voiceless woman who never lost her ability to speak.

THE voice of Ulla-Carin Lindquist whispers through the pages of her extraordinary memoir, the ghost voice of a dead woman telling her innermost thoughts and feelings to the stranger who is her reader. It is a record of her last year, a year in which the rhythm of her ebbing life seems part of the seasons: she was acutely aware of nature and of her place in it. She loved the outdoors, especially the sea, and told Ulrica as a child that she must find her toys outside.

Her final words in Rowing Without Oars are beautifully written, and perhaps the most beautiful thing is their simplicity. All artifice, all human pretensions and deceptions are stripped away, to the extent that the reader has to fight the urge not to avert their eyes, so intimate is what is left. On these pages, Ulla-Carin is laid bare. "I think she wanted to inform," says Ulrica. "She was really a journalist as a personality."

But she was "very warm" as well as analytical. "I think she had a really close relationship with her inner feelings. So if she was sad she cried, and if she was happy she laughed, and she really expressed her feelings very well."

Ulla-Carin's story emerges in her own words, written on a specially adapted computer controlled by her nose. She had been married twice and had two grown-up daughters, Ulrica and Carin, from her first marriage, and two young sons, Pontus and Gustaff, from her second. It was only her two little boys who lived with her and her second husband Olle, a surgeon. Just before she became ill, the family had returned from two years in Canada. Ulrica was studying law at university in Lund while her mother was away, but when Ulla-Carin became ill, Ulrica gave up her studies for a year to spend more time with her. "I realised I couldn't keep on studying. All the feelings occupied me so that I couldn't think of anything else. Everything else seemed to be so pointless and meaningless."

Ulrica is now 25. Her half-sister, who is not Ulla-Carin's daughter, but who accompanies Ulrica to give her moral support, says Ulrica has always been "wise". Perhaps that is why Ulla-Carin asked Ulrica to represent her with her book, which has sold 100,000 copies and become an international bestseller. Ulrica takes out a picture of herself and her mother. They are so alike, with their blonde hair and blue eyes. Alike in temperament too, so much so that Ulla-Carin feared for her daughter. Ulrica, she wrote, was "in control, disciplined. I have passed this on to my daughter. I hope Ulrica will dare to rebel." Ulrica says she does not simply want to be a lawyer. She wants to be a judge.

At first, Ulrica had difficulty accepting her mother's illness and could not bring herself to visit. When her mother asked why, Ulrica told her that it was hard to control her grief. "Your grief is my comfort," Ulla-Carin told her.

"Grief about somebody," says Ulrica, "is the other side of love. When she told me that, I came to visit more often. I think I didn't want to realise that she was really ill. But when I visited and saw that she became worse, I had to realise."

After that, she spent every second week with her mother, returning to her flat in Lund to give her mother time to rest, and herself time to recharge. "I needed to get back and have some rest with my friends and talk. But it was very tough at the time, because when I was away from her I was always worried about her, and when I was there it was very tough because it is hard to see your mum break down in this way. It is obvious to me, looking back, that I have been through different phases. The first thing was that I tried to deny everything. Then there was a period of being very sad, and then I was more, 'Okay, what do I have to do now?'"

There are no tears in Ulrica's conversation. She laughs a lot about her mother, a sign that her memory is balanced, her sense of her mother intact. It is easy to lose a person in death, to see only their illness and the horror of the end. But Ulrica seems to see everything. She tells you how special her mother was, but she tells you her foibles too. Ulla-Carin was a drama queen, she laughs, who used to run to the window when she heard sirens, in case there was a scoop to be had. And she was vain, always very concerned about her appearance. That never changed, even at the end.

It is understandable. Ulla-Carin lost all co-ordination; she could not eat or walk or go to the toilet unaided. She writes in her memoir about her fears of becoming unattractive to her husband. Will he be ashamed, she wonders, when she is sitting in a wheelchair with her tongue hanging out? Appearance mattered. Once a week, she would have a professional come to cleanse her skin, and she continued to have blonde highlights put in her hair.

"She always wanted to look good. She wanted me to blow-dry her hair, and she was so upset I couldn't get the right curl. I think it also showed her sense of humour - she still used anti-wrinkle cream, saying no, no, she didn't want wrinkles! It became even more important to her, because she wanted to look good. And she did look good. She was beautiful to the end, exactly as she wanted to be."

It is obvious in Ulla-Carin's book what is important in her life. Learning to let go of her life is learning to say goodbye to her children. Each of them coped differently, but it was perhaps the two boys, the youngest, who found most difficulty in accepting reality. As children, they were not yet experienced enough to have lost the belief that if they wanted something enough, desire alone would make it happen. "Mummy, can you become a newsreader again?" Pontus asked her. No, it was not possible. "Yes you can. You can if you have the will," he urged. "You have to be positive."

Sometimes, he would massage her cold feet. And sometimes, when Ulla-Carin lay helplessly on the bed, he would lie behind her, like two spoons in a drawer. It was he who made up blink language. "Three blinks mean I love you," he told her, and then blinked three times.

Gustaff, the youngest, at first refused to acknowledge her illness. She told him she would die, but he would not talk about it. In his own way, though, he brought comfort to her with his childlike clarity, which gave him a philosopher's profundity. "Mummy, every second is a life," he told Ulla-Carin. "Where have you heard that?" she asked him. Nowhere. He just made it up. "You have hundreds of thousands of lives left, Mummy," he said.

Sometimes, she felt guilty. Perhaps illness was her fault, a punishment. "What have I done wrong to be struck down by a terminal illness?" she wrote. "Why am I being punished? After the diagnosis, shame strikes me. I have been too lucky. And not thankful enough for it."

But something strange, quite inspirational, happened in the final year of Ulla-Carin's life. In the midst of sadness, she found happiness. "It is too strange," she wrote. "The truth is, I would not be without this part of my life." As her body deteriorated, her mind became stronger. "You were a bird that flew from twig to twig, seeking something else, something new," her daughter Carin wrote to her. "Too full of anxiety to stop. Perhaps it was a search for confirmation. Confirmation that you were good enough, confirmation that you were loved, confirmation that you were really alive." But now things were different. "Out of the dove," Carin continued, "an eagle was born."

Ulla-Carin felt loved in that final year. Her relationships intensified. "I am closer to my husband than ever before," she wrote. "Closer to myself." She describes going out to a restaurant with Olle, the comfortable nature of the silence between them, because she can no longer talk. Unselfconsciously, she describes him wiping food from her chin. "There are no more words," she writes. "Only the truth remains."

AS ULLA-CARIN'S voice grew dimmer, paradoxically her words grew louder. As her body deteriorated, her spirit grew stronger. "As long as my thoughts are free, I am inviolable," she wrote. "I can think freely and am therefore independent. Nobody can reach my soul."

She had sadness about her approaching death, but no fear. "She was not frightened of death; she was frightened of being alone," says Ulrica. "But when she realised we wouldn't leave her, I think she was quite comfortable with that."

In her memoir, there is a kind of spiritual searching. "I think she had her own faith, her own belief in God, but it wasn't conventional. I think she was too much of a journalist, too critical, to accept the facts that Christians do. I think she believed there must be something higher, but it doesn't need to be a person called God."

It is a year since Ulla-Carin died, on March 10, 2004. "It was a beautiful moment," says Ulrica simply. "She was so beautiful when she died. If it had been a different way, perhaps I would have been afraid. But I wasn't afraid. It was so natural. I had one thought as she passed away. I thought, 'Okay, this is what it must be like to give birth to something.' I don't know how it is to give birth to a child, but I thought it must be a huge feeling of being part of... being human. Fantastic and just highly religious almost."

She remembers little of the funeral, it was so traumatic. But she does feel that her mother's voice is with her still. "I've talked to my brothers and sisters, and all of us agree that she is within us. We can talk to her. I know that Pontus sometimes talks to her. Not talks like we talk now, but inside our heads. I think I get answers. It's just a feeling I have, a feeling inside. I think that parents... You are so close to them you can almost feel them when they are near. It is very hard to describe, a very abstract feeling. I just know sometimes she comes." She smiles. "I know, even now, she's here now."

It does not surprise me that Ulrica feels her mother here as we talk. Ulla-Carin's voice is powerful still, and resonant. She was not reduced to a whisper. It is too soon for Ulrica to say what her mother's legacy to her children is. But perhaps it lies somewhere in the word of Ulrica's sister Carin. "You are more alive than many other people," she told her mother when she was dying. "because you make the most of your time and live every second of your life filled with love. In your dying, you teach me how to live."

• Rowing Without Oars, by Ulla-Carin Lindquist, is out now (John Murray, £10)