The lioness - Iceland Review
Once, Auður used to go to bed with a knife. With three young girls in the house and a husband working at sea, the thin piece of timber that served as the front door was a temporary feature. She often felt nervous and fearful at night. Looking back on this, she laughs.
Yet this is a woman who’s known to queens and presidents. She’s on a first-name basis with a host of Icelandic ambassadors across the world, and some politicians and bureaucrats perhaps refer to her as “that woman again.” Some might even compare her to a lioness for her steely resolve and commitment to those she loves. “Mothers are fighters,” she says, “and a mother’s love is the strongest love.” She speaks these words sitting with her fists clenched.
As a champion swimmer in her youth, Auður was an active youngster. Some thought she’d become a priest and others thought she’d become a teacher. But following a dream she had when she was 14, she decided that nursing was for her. “I was meant to be a nurse. It was the only job for me.”
Marriage and three daughters followed, as did a career as an orthopedic operating room nurse, and her life consisted of juggling work and family commitments. “My life was just like everybody else’s,” she says.
However, that changed one day in June, 25 years ago. Hrafnhildur Thoroddsen, Auður’s then 16-year-old daughter, set off that morning with her friend to start a summer job. During the drive, the girls’ car was hit by a bus. Her friend was thrown from the vehicle and died instantly. Hrafnhildur sustained critical injuries.
She bled profusely, half of her abdominal wall was destroyed, and her intestines hung from her body. After Auður received a visit from a priest and policeman who told her about the accident, she rushed to the hospital. She didn’t recognize her daughter, so extensive were her injuries.
In the taxi on her way home from the hospital, Auður asked the driver to turn off the radio. “I asked him to turn it down because I couldn’t have it,” she says. “I didn’t understand why others’ lives had not stopped because my life had stopped. Time just stood still.” At home, she recalls the water hitting her in the shower, crying constantly, and her mother taking her for a walk, leading her around the neighborhood by the hand, like a little child.
Following a six-week induced coma, numerous surgeries and skin transplants, Hrafnhildur woke up. She was paralyzed below the waist, deaf and dumb and her hands were spastic. She had a stoma, her body was covered in sores, her back was broken, her hips had been smashed, she had lost one of her ovaries, a large part of her intestines, a number of toes on one foot, and one of her legs had necrosis. Despite these horrific injuries, Auður remembers that “it was clear she still had her wits about her. I gave her a crossword puzzle, and she was able to do that. I was at the hospital the whole year. My oldest daughter stopped work, and she took care of her little sister, who was seven years old, and my husband was mostly at sea. Then we had to change homes because our house was unsuitable for wheelchairs.”
The name ‘Auður’ means wealth and riches, and since her daughter’s accident, Auður feels that her life has become “much more useful.” Over the years, she has certainly given a lot not only as a mother but also as a pioneer in the field of spinal cord injuries (SCIs). In 25 years, she has not taken a holiday, striking a deal with her hospital employers that she would forego holidays in exchange for being able to accompany her daughter, on medical visits and surgeries. This agreement has involved numerous foreign trips to improve Hrafnhildur’s physical condition and quality of life.
They have traveled to Sweden, Las Vegas and China, four times to Russia, twice to France and twice to London. Over the years, Auður has enlisted the support of former Icelandic president Vigdís Finnbogadóttir to persuade the then Chinese President Jiang Zemin to allow a Chinese army doctor to travel to Iceland to operate on Hrafnhildur.
Throughout her search for treatment for her daughter, Auður found that the development of treatment for those with SCI has been slow to stagnant over the last 50 years. She views this lack of progress as the result of competition and egos within medical circles, prejudice against those who do not speak English as their mother tongue, and cultural discrimination. “People always think that medical cures will come from the West,” she says.
Receiving replies from 200 letters she sent around the world, including to Nordic queens, celebrities and medical experts, she gained the backing of the Icelandic Ministry of Health that coordinated a meeting in 2000 to disseminate this collected information at a gathering of the World Health Organization (WHO). In 2001, an international conference was then held in Iceland with 25 international experts in SCI treatment and officials from WHO and the Council of Europe.
In 2006, a database was created of new and emerging SCI procedures. Available in English, Spanish, Arabic, Russian and Chinese, the database contains to date 400 pages on experimental treatment of SCI. Maintained by biologist Dr. Laurance Johnson, who works with paralyzed veterans in the U.S., it is used by between 304,000 persons a month from over 170 different countries.
In 2007, Auður founded the Institute of Spinal Cord Injury (ISCI), a charity for which Vigdís Finnbogadóttir is patron. The charity’s mission is to be a leading advocate for advances in the treatment of spinal cord injuries and to work toward cures of such injuries through every possible means.
Founding a charity
Auður says “25 years ago I was told that a cure for SCI was just around the corner. I’m still being told that today. Yes, progress has been made in wheelchair and urinary catheter technology, and people are better trained in self-reliance, but I am not content with that. There is nothing on offer for newly-injured patients. Something is wrong in the medical field. It needs assistance from the international community and reorganization.”
Auður remains a powerhouse of industry. She supports Hrafnhildur, who is now able to hear and speak, live in her own flat, drive her own car, and is now taking computer lessons, rehabilitation and physiotherapy sessions and even voice and singing lessons.
The administrative duties for the organization are relentless. Auður regularly attends meetings and conferences, and when the business of the day is done, she sits down in front of her computer around midnight and responds to and sends emails and letters.
She has continued to make steady progress for her cause. In May 2014, a parliamentary resolution was passed, stating that the Icelandic government would follow up on SCIs, support the UN’s road safety initiative, and campaign for a United Nations Development Goal that would not only seek to find a cure to neurological diseases and injuries but also develop a specific medical policy for SCIs. In addition, the Nordic Council of Ministers pledged to focus on SCI in the coming years.
In September 2014, the Nordic Council met in Reykjavík. This collection of doctors, researchers and the FIA Foundation, which supports global road safety, explored and shared what was happening in the field of SCI. Given the comparatively small populations of Nordic countries, the researchers determined that Nordic nations are in the best position to make significant progress in keeping records of SCIs—which not every country does.
Dr. Joost van Middendorp, Research Director of the Stoke Mandeville Spinal Foundation in the U.K., who attended the meetings, says, “Our biggest recommendation is to establish a registry of both newly-injured patients and people living in the community in order to figure out who needs support and where they are. In addition, working towards a green paper to present to Nordic politicians is an aim.”
Also in attendance was Dr. Jae K. Lee of the Miller School of Medicine at the University of Miami. He said that there is a need to develop research on how to treat patients with SCI in order to increase their quality of life. He explained that the public thinks those with SCI would, first and foremost, wish to walk again. However, those who suffer from SCI have other priorities, like regaining control of their bowel and bladder.
As part of the Nordic Council meeting, a reception was held by Icelandic President Ólafur Ragnar Grímsson, another Icelandic head of state whose support Au›ur has enlisted. At this meeting, Ólafur spoke about the need for cooperation and expressed his continued support for Auður’s relentless and passionate crusade. Ólafur himself has taken an active role in initiating cooperation by inviting Auður and her daughter to an official dinner with now former Chinese President Jiang Zemin in 2002, allowing the two women to personally thank the leader for China’s medical treatment of Hrafnhildur.
Asking Auður what her wishes are today, she answers that she wants the UN to adopt research on SCIs and the nervous system as one of their developmental goals, as the nervous system affects diseases such as MND, MS and Parkinsons.
As to how ordinary people can help, Auður responds, “by sending good thoughts and good spirits my way. I need openminded people. I’ve been fighting for this for 25 years. Love is my weapon.”
This interview was published in Iceland Review Magazine September 2014.