Diary Of a Physical Therapist Episode 2
I clearly remember the morning when Abhiraj first wheeled into our lives. Rather, his mother wheeled him into our OPD. IT wasn’t like we had never seen a kid in a wheelchair. It was a common occurrence in a physical therapy department.
Yet when this dark skinned, extremely skinny boy sat on our treatment table, we knew he would be one of the patients we won’t forget. Despite his million limitations, he had a beautiful smile adorning his face and there was something about it that made you forget your own worries.
Abhiraj was a co-operative and compliant patient. Being a 14 year old with a rare medical condition topped with a progressive respiratory complication he was more full of life than most normal individuals with typically fuller lives. He was receptive to learning exercises and techniques.
However, he required daily respiratory rehabilitation at least till he was in better shape and learned to manage his condition based on a home programme. This was difficult to achieve on an OPD basis. Although Abhiraj was ambulating on a wheelchair, it was still a feat to bring him to the hospital everyday. He lived close by but he would still require private transport and he wasn’t that well off to spend that much on transport every day. One of the reasons he was under treatment in a government set up.
This brings us to his mother. She was educated as against the majority of the patient population in a public hospital. She was aware about his condition, she was aware about the role of rehabilitation. But what stayed with me was how resilient she was.
Being a single parent of two children, she was working full time. She had a day job and was paying for the education of an elder daughter along with Abhiraj’s treatment. Her mother, an illiterate with little knowledge of almost everything in the world, was taking care of Abhiraj when she was out working to make ends meet. Yet Abhiraj’s mother was ready to go to any lengths to make her child’s life better.
His medical condition did not warrant him a long life and his mother knew that. However, the strands of hope in her eyes were making us work for him against all odds.
We communicated with his pulmonologist and he was admitted to the wards to receive respiratory rehab. Slowly we started working on his muscle strength, his gait and introduced him to assisted walking. We trained his mother for home care physiotherapy and he was discharged in a much better health. We were all very happy to see his progress.
He would visit our OPD from time to time and we could always include newer progression exercises in his program. He managed to lead a relatively normal life for around 8 months with all the home care management techniques, he had been studying at home too. However, another opportunistic respiratory infection carved its way into his system and he was hospitalised again. This time too, with adjunctive devices and a long term stay in the hospital care environment he was able to go back to supported standing and his chest was clear of secretions when he went home.
However, there was a visible deterioration in his general condition. Something that wasn’t quite measurable, yet.
A few months passed and he was back again – only this time – he was critical. He was on a ventilator, barely responding to drugs or physiotherapy. After a point, the pulmonary physicians declared there wasn’t much to do.
In the coming days, we saw the ‘father’ had emerged out of nowhere. He wanted to meet his dying son. We wondered where he had been when he was relying on three women, two out of them were dependent on the third one financially while he was dependent on all of them in every way. His sister had bagged admission in med school and had moved into a hostel. We didn’t see much of her and his grandmother was barely able to understand anything in the hospital set up. She would relieve his mother sometimes though.
But we never saw this father come up and take up any responsibility – financial or physical. It was always his mother running around with files to every office to get grants and funds, it was her who worked all day and missed pay days when her child was in the hospital. It was her who cleaned his diapers and changed his clothes even when he was 14. It was her who fought on every front with no one to fall back on.
And then one day, as we were at the entrance of the ICU – a bunch of people stood outside, crying their eyes out. The sheer amount of people was shocking. Because so many people never turned up for any death. Not inside the hospital at least. It was ironic that there were so many people who were in his life yet nobody was there for him when he was alive. When he was alive he was a burden for his own father. What point did it make to show up in heavy numbers and cry for a child who is probably at the better end of the bargain because his suffering ended?
I could bet that losing Abhiraj was more of a loss for us because we knew him better. We knew how much he loved his mother, we knew his favourite cartoon character and his favourite video game. We knew he didn’t like studying that much but could spend hours in front of a screen like every other child his age. We knew his pain, we had wiped his tears and seen him lose hope when he saw his mother suffer. We knew that his disease did not make him sad, his mother’s tears did.
But all these people. These so-called family members. Did they really have the right to flood the hospital and pretend to care? Nobody even visited him when he was alive probably with the fear that they would have to help. Maybe it was their guilt that brought them out at his death and maybe they were crying out of guilt. Who knows.
But I learned one thing clearly, we are almost always on our own when the times get tough. Maybe everyone around us will have a legit reason to not be around and we should be prepared to deal with it. The world is hardly kind! Hence we should be kinder when given a chance…