The Long and Twisted Path – Breaking Barriers – The Borneo Post – 2 March, 2013

The long and twisted path
Posted on March 2, 2013, Saturday

MY life after the accident was unnerving. The physiological aspects of my body were drastically altered and no longer functioned like they used to. I was like a baby having to learn everything anew.

The spinal cord is a bundle of nerves relaying impulses that coordinate movement and sensation between the brain and the body. When it is injured, the impulses are interrupted. The higher up the injury to the spinal cord, the more severe the paralysis becomes.

My injury was at the cervical segment of the spine. This is at the neck level which is rather high up. Because of that, my fingers are barely functional and my wrists are weak. My diaphragm is also impaired and I am unable to take in a full breath.

The injury did not only rob me of the ability to walk or move my arms. I no longer have control over my bowel and bladder. I need suppositories to help me defecate. I have to insert a catheter, which is essentially a latex tube, into my bladder to drain the urine.

The only good thing about the injury is that my spinal cord was not totally severed. Although I am effectively paralysed from the upper chest down, I have a numb sense of touch that progressively diminishes downward. However, I have no sense of temperature. Pain, hot or cold feels the same to me.

The doctor had wanted to send me for rehabilitation after I recovered from the surgery. My father did not like the rehabilitation ward because it looked dingy and depressing. He felt that putting me there was like accepting that I would never walk again.

As there was nothing more that the doctor could do for me, he allowed me to go home. I did not go through the proper rehabilitation process because of that. It would have been an important step for me to learn to manage my activities of daily living with whatever limb functions I still possess.

Without the benefit of guidance from an occupational therapist, I had to learn through trial and error, and from people in similar condition that I befriended in the hospital. Although I regained some strength from the intensive physiotherapy sessions, I lacked the physical skills to care for myself.

For many years after that, I depended on my mother for tasks like cleaning up after I emptied my bowel, draining the urine bag and helping me wear clothes. I had not seriously thought about how I was going to cope when she was no longer around.

It was only 15 years later that I learnt to dress by myself. I had to do it because I was planning to travel alone from Penang to Kuala Lumpur to meet some friends. We had gotten acquainted in an online chat room.

Having tasted the freedom of being able to travel by myself, I was determined to be more independent in all my activities. My mother would still hover around, ready to lend a hand whenever she thought I needed it.

It usually took me 30 minutes to put on diapers, clothes, socks and shoes. When I was dressed and ready to go, I would be breathless and exhausted.
One day, I had an extremely difficult time wearing my pants. My mother came to my rescue. I was more than happy to let her help me again.

This she continued to do until she was no longer able to. She had gotten seriously ill and became bedridden by then, and I had to attend to her needs instead.

Those few months before she passed away, I had to perform most of the household chores including looking after her and myself. It was then that I realised she had sacrificed much to make my life easier. Indeed, a mother’s love knows no bounds.

Without my mother to fall back on after that, I had no choice but to manage my activities of daily living by myself. Through constant practice, I could put on my clothes more quickly. Eventually, I could get fully dressed in 10 minutes by improving my techniques. It was still as tiring though.

All in, it took me 20 years to get my act together, to work all my activities of daily living into a routine that I could handle by myself. Had I been guided by an occupational therapist in the initial stages, I would not have had to take that long and tedious path.

What I want to point out here is that rehabilitation is a crucial component in the recovery process for people living with the chronic effects of spinal cord injury. It is one step that should not be skipped at all costs.

I only realised that I could do more than I thought possible when my mother was no longer around to pamper me. That took two long decades. Rehabilitation would have helped me achieve that in a much shorter time.

I am not blaming my mother for that or my father for not allowing me to undergo proper rehabilitation. They did what they thought was best for me but tough love would have been the best love under those circumstances.

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Author: Peter Tan

Peter Gabriel Tan. Penangite residing in the Klang Valley. Blissfully married to Wuan. A LaSallian through and through. Slave to three cats. Wheelchair user since 1984. End-stage renal disease since 2017. Principal Facilitator at Peter Tan Training specialising in Disability Equality Training. Former columnist of Breaking Barriers with The Borneo Post. This blog chronicles my life, thoughts and opinions. Connect with me on Twitter and Facebook.