Between life and death

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SEVERAL news articles that I read recently got me thinking again about the worth of life. They were stories on one person — Timothy Bowers. The 32-year-old man owned a successful mechanic shop in Indiana in the United States. He just got married in August. His wife is pregnant and expecting their baby in April next year.

On the afternoon of Nov 3, he went deer hunting. As he was climbing up to his tree stand, he stepped on a dead branch that gave way. He fell 16 feet to the ground. The impact from the fall fractured three cervical vertebrae and left him instantly paralysed from the neck down.

He was found at the scene only five hours later. At the hospital, he was heavily sedated and hooked up to a ventilator. The prognosis was not good. Due to the severe trauma to his spinal cord, doctors thought he might never be able to breathe on his own, let alone regain the use of his limbs and walk again.

Apparently, he had a conversation with his wife prior to the accident that he never wanted to spend his life in a wheelchair. Faced with the reality of that grim prospect, his family members requested for the doctors to bring him out of the medically-induced coma. The intention was to present the prognosis to him and ask if that was the kind of life he wanted. He responded to indicate it was not. Doctors asked the same question and the answer was the same.

Based on his decision, doctors removed his breathing tube. Seventy five family members and friends gathered around to share those last moments with him in the hospital and to bid goodbye to him. He died five hours later surrounded by his loved ones, just one day after that tragic fall.

I cannot imagine how heart-breaking it must have been for the family to see him in that condition, then learn of his decision to go off life support and watch him pass away. Most importantly, it was his personal decision. Whatever it is, it was a scenario we can never really empathise with, no matter how hard we try, unless and until we are caught in it ourselves, and then maybe not.

While I try very hard not to judge the entire incident, I cannot help but ponder over two issues arising from it: the haste in presenting the options to him and the stigma of being a wheelchair user. Was it too soon to make an informed decision especially when the body was still in shock? Is there no meaning to life after becoming a disabled person?

I remember I was in a daze for days after the accident that left me paralysed. Although I did not need a ventilator, my breathing was shallow as my diaphragm was affected. The traumatic experience of suddenly losing the ability to move my limbs and losing sensation to 80 per cent of my body was simply too overwhelming. It was as if the world had collapsed on me.

My emotions were a jumble of depression, desperation and panic. I was not sedated. Nonetheless, I was not in a state of mind to decide anything, and definitely not decisions with regards to my treatment and more so those that involved life or death.

Therefore, I cannot comprehend how a matter of such importance could be decided on in a matter of minutes or hours. Things could be better, or it could just be the same. We would only find out if we hang around long enough to see it.

On the matter of stigma, the general perception is that being disabled is a fate worse than death. This is how it has been portrayed for a long time. Casual onlookers may look at a person with severe physical impairments and resolve that life is meaningless when one cannot walk or feed oneself.

That is a very simplistic perspective of the situation. A person’s worth is reduced to what one can or cannot do by oneself. The zest for life and the desire to survive by any means, a trait of all sentient beings, are overlooked, ignored and not encouraged.

I have friends who are living with high-level paralysis from spinal cord injury and muscular dystrophy. Some have limited hand function, others none at all. They have personal assistants to support them in all their activities. When I first got active in the Independent Living Movement, they were my role models. They still are.

They are not only living testaments that severely impaired persons can live productive lives. Their work in promoting independent living has changed the lives of many people in similar situations across the Asia Pacific and Africa.

Having to use a wheelchair permanently is not a life sentence. I am not going to say that it is easy either. There are challenges every step of the way. However, we need to look beyond what we can and cannot do physically to see that life is truly worth preserving.

Irrespective of my sentiments in this issue, I pray that Timothy Bowers has found peace wherever he is now.

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