Gabi was born with spina bifida and has been living with the condition for 15 years. For her, this has meant living with paraplegia below the level of the third lumbar vertebra. Over the years, Gabi has grown and learned to cope with many of the functional limitations that resulted from this condition, achieving some degree of success in managing its associated impacts on her and her interactions with the environment.
Medically, she has had problems with a number of secondary and/or related conditions, most of which were treated successfully. Early on at the age of three, it was clear that she had an Arnold Chiari malformation (see Box 1) and required a shunt to treat both the hydrocephalus and the mild neurological deficits that it caused. At the age of ten, she suffered from epileptic seizures, but has not had any since being treated medically. Also at ten years, her hip joints began to suffer from luxations and she was at risk to develop a scoliosis which would decrease her respiratory functions, among other things. Both problems were treated surgically and Gabi’s spine was fixed from Th1 to S1, greatly limiting her available range of motion and mobility. Lastly, Gabi suffered from a number of accompanying diseases. These included autonomic dysregulation of bowel and bladder, sexual dysfunction and short-sightedness.
In the years that Gabi has lived with spina bifida, she has come to find the condition both normal and world-dividing. She has only ever known life with the given limitations of her condition, but at the same time has found herself in comparable situations with her non-disabled peers. For her educational life Gabi has been enrolled in regular public schools, with most of her peers not being disabled. She lives at home with a supportive family that includes an older brother and sister. Like any teenager, she is social, often meeting friends in her swimming and hockey clubs for persons with disabilities where she even at times competes. She also enjoys painting, reading, listening to music as well as playing the flute, and of course communicating with friends via text messages. It is also important to note that Gabi’s friends – those whom she is closest to – are other teenagers with disabilities; they are not her peers at school.
In the years that Gabi has lived with spina bifida, she has come to find the condition both normal and world-deviding.
For Gabi, there are two outstanding problems in her current phase of life: dependence on others and peer relationships.
I can’t move because of the plate in my back. And I can’t even dress the pants by myself when using the toilet…every time I have to go, someone has to accompany me to lift my pants."
I have to say that I’m much more open and happy to be around others in wheelchairs.
The classroom is one of my biggest problems…sometimes it really is depressing. You always realize you’re not the same. Recently, I have to admit, I just don’t feel like learning anymore in this kind of environment.
Gabi on living with spina bifida
Gabi’s health insurance fortunately agreed to pay for a three-week intensive in-patient rehabilitation program specifically created for adolescents with diseases of the spinal cord. The stated goals in this program are to “increase the independence of adolescents with congenital or traumatic spinal cord injuries” – a program well oriented to Gabi’s needs.