A spinal injury changed Nancy Sherpa's life. Once an athlete and "very active mom", she now has to watch every move she makes, even the small ones we take for granted. "Nothing is black and white in spinal injury. Even if your problem is reversible, the process is painfully slow and frustrating," she explains. Still, Nancy is lucky. She drives, works
at her trekking office and has a very supportive family.
Victims such as Sherpa, families affected by the injury of a member, as well as professionals, all came together on 7 April to open the Spinal Injury Sangha Nepal, and the Sangha's first venture, the Spinal Injury Rehabilitation Centre at Jorpati. The centre was opened by Sir Edmund Hillary, who has seen many spinal injury victims use his two charitable hospitals in Solu and Khumbu.
This is the first operation of its kind in Nepal. While there are private and public hospitals that treat such injuries, so far as they can be, there is nowhere victims can go to learn how to live with them. The Centre seeks to provide patients with specialised care, support and counselling. In addition, they will be taught skills and given information and education that will help them remain active to the best of their abilities. "Counselling is as important as treatment. Patients need mental support to lead a normal life" says Dr Anil Shrestha, technical director of the Centre.
"Every seriously injured person needs this. I'm glad I can help other traumatised people accept their new physical condition and keep up with the business of living," says Goma Dulal, who lost all movement to juvenile rheumatoid arthritis over 20 years ago. At the Centre Dulal will counsel people like Narayan Yadav, a quadriplegic. Before meeting with a road accident, Yadav was a cook and the breadwinner for his five children and wife. "When you are traumatised and mentally weak, the entire world looks gloomy," he told us from his bed at the Centre.
A rural lifestyle and difficult terrain together make life difficult for spinal trauma victims and their families in Nepal. A disproportionate number of people suffer injuries to the spine from falls endured while collecting fodder, following livestock on cliffs or transporting consumables on precipitous trails. With the spread of the road network, there has been a sharp increase in spinal trauma from road accidents.
Women are the worst-affected. "The underprivileged social status of women is a factor in making them victims of spinal injuries and the trauma that follows-women are given dangerous tasks like collecting fodder from tree tops, and families aren't enthusiastic about providing them treatment," says Pradeep Dhungana, a physiotherapist with the Ryeler Cheshire Home at Jorpati. Spinal trauma victims visiting his centre are mostly married women between the ages of 16 and 20, normally victims of falls.
Life for survivors, already made difficult by their new impairments, is made worse by the lack of basic knowledge and rehabilitation facilities. Fifteen-year-old Dil Maya Tamang of Kavre told us that when her injury resulted in paraparesis, worse than her pain and disability were comments from neighbours: having this kind of handicap at such a young age, they said, Dil Maya was better off dead.
Says Kanak Mani Dixit, president of the Sangha. "Our attempt is to reverse this fatalistic attitude and concentrate on improving the quality of life of people who have suffered life-changing spinal injuries." Dixit himself broke his neck in a trekking accident two years ago, and survived miraculously.
The Centre, run entirely by qualified Nepali nurses, physiotherapists and health assistants, will have separate male and female wards, a physiotherapy unit and an occupational therapy unit. It has already started with four live-in patients, and will provide rehabilitation care for up to 30 individuals, as well as outpatient support, once it starts operating to full capacity.