Into love

At approximately 10 a.m. on a hot July morning, in a small house in the district of Makupa, Anil was hauled into the world. Ba’s pregnancy had been uneventful, so it came as a surprise when the progress of labour stalled. The attending Dr Kurve (koor-vay) was compelled to fetch his bag of instruments, using forceps to deliver the 10lb baby boy. It was fortunate that the good doctor had been present: Ba’s other children had been born only with the assistance of neighbours. I am anxious just thinking about a pregnancy without the comfort of screening and checks, followed by a labour managed only by friends, no matter how many babies they may have helped to deliver in the past. Yes, there is something to be said about trusting instinct and experience rather than relying on modern medical techniques and knowledge but I would certainly take an ultrasound scan and a midwife over Sonia next door.

Initially all appeared to be well; Anil was thriving, putting on weight and smiling. He was almost six months old when someone noticed that he could not yet hold up his head. Anil failed to reach all of his other milestones at the appropriate times, and finally, one of the many doctors that the family consulted concluded that he has cerebral palsy. Definition of cerebral palsy: ‘Cerebral palsy describes a group of disorders of the development of movement and posture….’ (Bax et al from International Workshop on Definition and Classification of Cerebral Palsy, 2004). Translation into reality: Anil first sat unsupported at four years of age, learnt to speak at seven and has never stood upright. Ba massaged the tense muscles of his body every day, hoping to reduce the stiffness. The contractures, Indira remembers, did not seem to be as severe during his early years, but Anil gradually developed deformities due to the spasticity of his muscles: his hands are doubled over at his wrists, with some of the fingers twisted or curled in, his legs are bent at the hip and knee and he is unable to straighten them. A wheelchair would have been impractical in the apartment, and in any case, Anil’s hands were never capable of propelling one effectively. He learnt to move around on his wrists and knees, swinging himself forward. This works surprisingly well, but has left him prone to multiple infections which leave him bed bound while the antibiotics work their magic. Speech, too, is a real effort, and it is only by spending time with Anil and becoming used to the rhythm and pattern of sound as he articulates that we can easily understand him.

Anil was and is a constant in the family’s lives. He would wait for his siblings to get home from school, laughing along and joining in their chatter. He learnt to read with them, poring over their homework, and his arithmetic remains in daily use. His siblings sailed off to university and returned home. In their absence he had undergone the last of his nine operations. The family had found a German orthopaedic surgeon who had been confident that he could help. Each time the unspoken wishes hovered, a red balloon filled with hope: his legs would be straighter, he would be in less pain, he might be able to hold a spoon.  Anil spent two years with his legs in plaster casts. In the end the red balloon drifted away, into the vast African sky.

Anil has always walked the tightrope between not wanting to be troublesome and fighting for his wants and wishes- the latter, I suppose, stemming from being one of seven children.  In 1964 Anil’s dream of going on safari was made reality: he travelled to Voi, carried from lodge to safari van on the shoulders of a family friend. This was a highlight, excitement still apparent as he talks about the trip. In past times, Vasant and Anil’s evening visits to the lighthouse were set in stone, and if Anil expressed a wish to go to the toy shop or the beach then efforts would be made to arrange this. Ba not only takes care of his numerous daily needs but if Anil occasionally expresses a preference, for example, for a particular meal then she will readily cook it for him. Anil has his own part to play in this family: his is often the voice of reason, and his ability to think logically has stood them all in good stead.

But he grows older and weaker. ‘I have to go….’ said Indira, mid-sentence, during a recent telephone conversation. Anil had been sitting in his usual position on the terrace and he had fallen sideways. This has started to happen more frequently, apparently. He cannot manage what he used to; his need for care grows. Ba, at 91, remains his main carer, although Indira shares the work- mighty women, both of them. In spite of all their efforts, Ba can see her son gradually decline. Occasionally, in frustration, Ba says ‘We must have done something terrible in a previous life, to be punished like this- all of us’. Usually, however, she says ‘God gave us Anil and that was our luck. We must look after him.’ He was born into love.