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.

Comments can reach the writer via columnists@theborneopost.com.

Read more: http://www.theborneopost.com/2013/03/02/the-long-and-twisted-path/

Fei Por’s remains were cremated and interred in an urn the day after she passed away. We could not bear to have her simply buried in an unmarked grave in an unknown place. Her home is here with us and it is only right that we bring her back with us. Her ashes now sit in one corner of the living room looking out to the garden that she used to frolic.

Fei Por’s cremated remains interred in a urn with her portrait.

I had blood extracted for a series of tests on 4th March 2013 before seeing the nephrologist the following week. They were Renal Function Test, Liver Function Test, Complete Blood Count, Lipid Profile, Nutritional Anaemia and calcium-phosphate test. It was to be my first time consulting a nephrologist at the University Malaya Medical Centre.

I went to see the nephrologist on 11th march 2013. Serum creatine broke the 300 umol/L threshold to hit 301 umol/L. It was unsettling to see the creatinine slowly creeping up the scale. Dr Wong, the nephrologist, explained that at some point in time in the future, I will need dialysis. I am at a pre-dialysis stage and need to be prepared for it. He explained the two options available to me – peritoneal dialysis or hemodialysis.

For hemodialysis, I need to go to a hemodialysis centre where I will be hooked up to a machine to have the waste product in my blood filtered. Each session lasts about four hours and has to be done thrice weekly. For this method, I have to have to undergo a surgery to create a fistula for blood to be extracted dialysis and then returned.

In peritoneal dialysis, a catheter is used to fill the abdominal cavity with dialysis solution. The solution draws waste from the body using the membrane in the abdomen called peritoneum as a filter. The waste is then drained away through the same catheter. This procedure has to be repeated every six-hourly and can be done anywhere.

A Complete Blood Count was also done to check on my anemia. The figures looked horrible with most of the blood elements tested coming in below the average ranges. Serum calcium-phosphate test show that I am hypocalceamia or low blood calcium concentration. There is no treatment recommended at the moment and I had to go back to see him in another three months which coincides with my appointment at the Rehabilitation Medicine Clinic.

However, Dr Wong suggested that I start on Ketosteril again and gave me two boxes to start off. That supply will last me forty days at two tablets twice daily. I had stopped taking it after I developed itching. I have been taking it for one month now and have not experienced any allergic reaction so far.

My LDL level went up because I stopped taking Lipitor for three months to see if it was causing the urea level to go up. Apparently, it did not as urea level was still high. I have since gone back to 10mg daily. I hope the next blood test will show better results.

Renal and Liver Function tests and Lipid profile done on 4th March 2013.