When Mum and Dad are paralysed
“As a baby, Johannes was very wellbehaved and well-adjusted. For me as a mother, it became difficult when he started to walk and wanted to crawl up everything.”
Ida Schiestl strokes her son’s forehead tenderly while he is busy playing with wooden blocks on the couch. “Johannes is always in motion and loves climbing on monkey bars,” his father Andreas adds. “We really don’t want to forbid him such experiences just because we are afraid for his safety.”
At first sight, it becomes immediately apparent why Ida and Andreas worry more than other parents. They are both paralysed and confined to wheelchairs, which means that they are both restricted in their role as parents.
Two fates - one diagnosis
Andreas is 49 years of age and comes from Tyrol, Austria. Skiing was his passion from an early age. He attended the trade school for winter sports in Stams before completing his ski instructor training. He then started working at a national sports education facility.
“I accompanied groups on the ski slopes for four years. I loved being active in the fresh air all the time,” he recollects. During summer, he was responsible for the inspection of the ski lifts. This was also his objective on the fateful August 23, 1993. Aged 25 at the time, Andeas was headingback into the valley, driving his Unimog across the slopes. “It was raining heavily. Suddenly, the vehicle started to slip and flipped over with my colleagues and myself inside it…” His two colleagues survived the accident almost unscathed. But Andreas was catapulted out of the vehicle and was seriously injured.
Due to his head injuries, Andreas was kept in an induced coma for five days. “I suffered from really bad nightmares, but the reality of my situation only caught up with me when I woke up.” The diagnosis was a complete spinal cord injury at the level of the 10th thoracic vertebra. After spending four weeks in hospital, Andreas was transferred to a rehabilitation centre in Bad Häring. “They made me sleep in an air-cushioned bed due to the many open skin sores I had.” After eight weeks in bed, his wounds had finally healed. “I did have nights during which I lay awake and wondered which direction my life would take.” His immediate family offered him vital support. “I think my parents really struggled, but they didn’t show it in front of me.” As an athlete, Andreas is no stranger to physical setbacks and tries to deal with his new situation as best he can. “As soon as I was allowed to return home, I joined the ‘Tiroler Unterland’ wheelchair sports club and started monoskiing.” Andreas trained very hard from 1997 to 2004, which resulted in him winning a number of medals at the Paralympics in Nagano and Salt Lake City, the Super G World Championship and – in his last season – the Overall World Cup title. Andreas retired from his highly successful career in sport at the age of 36, which is also when he met Ida.
Ida was aged 22 when they met, and had grown up in South Tyrol with three siblings. As a child, she rarely sat still and loved roaming through the forests. On the evening of September 1, 1994, at the tender age of 12, she was suddenly overwhelmed by an intense pain. “I remember feeling a stabbing pain in my back; it felt as if all my muscles contracted at once. I sat down, but then couldn’t stand up anymore.” Within seconds, the now 35-year-old was unable to move her legs. “I was rushed to the hospital, but the doctors were at a loss. They transferred me first to Bolzano, then to Innsbruck.” Her subsequent medical report stated that an inflammation had damaged her spinal cord at the level of the 10th thoracic vertebra. “They said it was a virus, but I still don’t know what caused it.” At 12 years of age, Ida found it difficult to understand the consequences of her injury. “All my bodily functions below the injury site were gone immediately. Even though I spent four months in the hospital, I was not really aware of what was happening to my body.” During her time in Bad Häring, she learned how to handle a wheelchair and a catheter. Secretly, she always harboured the hope that therapies would return her to normal. “However, I never experienced a real breakdown when everything stayed the way it was,” she remembers. “To a certain extent, it certainly helped that I was still so young and carefree at the time.” Ida returned to her school one year after her injury and started working at a county council when she was 18. She met Andreas during a follow-up visit to Bad Häring.
“I immediately noticed Ida,” Andreas smiles. The two exchanged numbers and agreed to meet up again. “It just seemed so easy, because we didn’t have to explain anything. Andi understood my situation and everything it entails.” Ida and Andreas became a couple despite an unspoken rule in their environment. “Everyone said that a relationship between two people in wheelchairs wouldn’t work. And yes, of course it would often be more practical to have a ‘walker’ at your side, someone who can help you with certain things.
But love has its own rules,” the 49-year-old says while smiling at his wife. After two years of a long-distance relationship, the couple married in 2006 and Ida moved in with her new husband. In 2011, the couple realised their dream of owning their own house – with stairs, incidentally. “The size of the plot made us decide to build a house with two floors. It works quite well thanks to the built-in elevator.”
Living as a trio
The moment they got married, the couple knew they wanted to become parents, even though tongues started to wag in the village. “The people said it was insane for two people in wheelchairs to have a child. I was fairly unprejudiced. One never knows what one might face,” Ida recalls. She became pregnant through artificial insemination. “I gained a lot of weight. I toppled over twice while getting out of or into my wheelchair, because I couldn’t gauge my body anymore. Apart from that, everything went quite smoothly.” In January 2013, Johannes was delivered via a C-section. His parents describe him as an uncomplicated baby who slept a lot. “We had a special changing table made, as well as an extra baby seat to enable us to walk with him.” Johannes needed to adjust to his parents’ limitations as he got older and started to crawl. “He knew intuitively that he had to drag himself up on the wheelchair if he wanted to be picked up by us. That was quite impressive actually.”
Nevertheless, Ida and Andreas often still felt insecure, especially when their son hadn’t learned how to walk by the time he was 16 months old. “Children are quite visual and I started to wonder whether he wasn’t learning how to walk because we couldn’t show him how to,” Andreas says. He and his wife tried not to place too much pressure on themselves and their son. When Johannes finally started to walk and explore his surroundings, Ida felt particularly anxious. “In the evening, I was often completely exhausted, because I was always worried that the little man would fall off something.”
Today, the three-yearold understands very quickly what his parents are capable of and what they cannot do. “Right now, he’s in a phase during which he is testing his boundaries. He’s started to scream when things don’t go his way. However, he accepts every wheelchair-related issue without hesitation.” He is also extremely considerate in the playground. “He often asks us how high he is allowed to scale the monkey bars. Even though we have physical limitations, we want him to explore his limits like every other child. Our disability should never limit him in any way,” his father stresses. Nevertheless, Johannes knows that he is only allowed to visit the brook in the forest if he is accompanied by the neighbour. He doesn’t run off when he is alone with his parents. “I can’t even imagine how it would feel if he plays near the water, falls in, and we can’t help him,” Ida reflects.
“It takes four hands”
Ida and Andreas can trust their son and have, over time, developed into a well-oiled team. “The older he gets, the easier certain things become. He has even learned how to climb into the bathtub by himself. This makes some aspects of our life much easier.” What sounds so easy is often a challenge in everyday life. Even though both parents have been paralysed for 20 years, the presence of Johannes seems to make them more aware of their own restrictions. “It takes four hands to take care of a small child.” Sometimes the couple’s words carry a hint of melancholy. “Going on holiday as a family feels too unsafe. Obviously, it would be nice to take a hike as a family or to teach Johannes how to cycle,” Andreas muses. Ida is especially bothered by such thoughts. “I do sometimes wonder whether Johannes misses out in some situations. But then I realise that we take very good care of him. I believe that’s worth a lot.”
Andreas works in the office of an installation company and is usually home at noon. Ida is still on maternity leave. “We enjoy the time we have as a family.”
Johannes started going to kindergarten in autumn. “I always pick him up from the bus down there,” Ida says while gesturing vaguely in the direction of the street. “When the bus arrives, the mums get in and pick up their little ones. The bus driver had to help Johannes today. He started to cry when he was finally able to leave the bus and all the others had left. He thought that he would be the only one to be left on the bus.” It’s a difficult situation for the three-year-old and his mother. “I would love to step into the bus and pick him up like every other mother does. I felt so sorry for Johannes today,” she says in a whisper. “On the other hand, it does make him more independent.”
The other children have accepted the wheelchairs of Ida and Andreas. “I do hope that it stays this way and that our son won’t be teased because of us later.” Looking to the future, Andreas still has hope. “I am sure that, over the next few years, something will improve our situation. Be it mechanically or genetically, the research community is fortunately working in all directions.” He is especially interested in the progress in a very specific area. “I have suffered from severe pain since my accident. This pain restricts me immensely and has made me lose hope on some occasions. I do hope that researchers manage to find the source of this neuropathic pain and how to alleviate it.”
While Andreas recounts his story, Johannes lays aside his toys, climbs onto his father’s lap, and kisses him on the cheek as a token of farewell. The neighbour is about to pick him up for his walk into the forest. He is about to visit the brook he has never been to with his parents.
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