We are a society of reactive people but that is not our fault. We each have our own cross to bear that blinds us to the needs of others who are less fortunate. Most times, we are caught up in the daily grind of trying to make ends meet, trying to meet deadlines, trying to keep our sanity intact. We have one thousand and one trivial chores in our minds that barely leave enough room for the essential and the genuinely important concerns that should capture our attention.

Following the news of the totally paralysed man in Hong Kong who had asked the legislators there to start a motion to legalise euthanasia yesterday, the Direction Association for the Handicapped (DAH) has initiated a fund raising drive to raise HK$5 million (RM2.4 million) to help him, identified by the media as Peng Chai. The news link is here.

The DAH is an organisation that serves the severely disabled people in Hong Kong. The amount raised will be used to acquire an electric-powered wheelchair and a portable respirator, both which would allow him a great amount of mobility and the luxury of going home, where two maids will be hired to look after him. For a man who has lived thirteen years of his life in a hospital bed, this progression will be freedom unparalleled.

On all accounts, Peng Chai is a courageous and thoughtful man. He did not want to burden his family. Only those who are nursing a family member who is totally and permanently paralysed will know the amount of mental pain and the intense labour that goes into the caring. To him, death was the only way out. To a caring society, his death wish was a slap in the face. More could have been done to help him, and that is exactly what they are doing now, only after the story was highlighted in the media. This should not be the case. Why now only after thirteen years? Still, it is never too late. I pray that Peng Chai will accept the offers of assistance and go on living. The quality of life should not be measured by health and physical abilities alone. It is the mind that makes all the difference.

What do you do when a loved one faces prolonged suffering after all treatment options have been exhausted? What should we do when he pleads to us to help him end his sufferings? Do we continue to allow him suffer the physical and psychological pain until he passes on naturally? Or do we help him fulfil his wish?

The patient does not suffer the pain alone. It takes its toll on his family and those close to him, too. What can be more distressing than seeing a loved one who had always been active and healthy deteriorate to a state where his every need has to be taken care of? What can we do when the pain eats into his very heart and we have to wait for another three hours for his next dose of pain killers?

I am greatly disturbed after reading about the paralysed man in Hong Kong (reported here and here) who pleaded for the right to die. Being a quadriplegic myself, I can partially relate to the torment that he has to go through day after day. Unlike him, I can look after myself to a certain extent. However, he is totally paralysed, needs everything to be done for him, and breathes with the help of a machine. In addition to that, chronic and acute disabilities like this put a great mental and financial strain on his family as well.

“I lie in bed 24 hours a day,” the man wrote by tapping on a computer keyboard with his chopsticks. “I need other people’s help to eat, urinate, clean my body, turn around and sleep. I am a total invalid and a financial and mental burden to my family.”

The Strait Times, 21 April, 2003.

The question is do we help him execute his desire or do we deny him his appeals to end this torment? My faith disallows euthanasia but I have my own personal opinions regarding this issue. My views on this may be flawed and could still be based on my experiences and beliefs before I converted. Nevertheless, euthanasia is against the law in most countries. If so, how then can we improve on the quality of life of people like him who have already given up hope and looking forward to be delivered from their sufferings? Palliative care alone is truly not sufficient.

The BBC contains comprehensive information on euthanasia and the views of the major world religions here.

We stopped the car and waited. First, the driver of the other car alighted. He did not seem to walk with a limp. We waited for the passenger. She did not look crippled either. We, the occupants of the two cars, stared at each other for what seemed like a long time. I pressed the button to wind down the window and pointed to the driver that the parking lot was reserved for the disabled. The signboards and the disabled logos painted on the wall stated the obvious. He said that the other cars were also parked there. I do not know if the other cars parked there had disabled drivers or ferried disabled passengers but I told him pointedly that I am disabled.

He grudgingly moved his car and stopped a short distance away, allowing Peter to drive into the space that he had occupied. When he saw my wheelchair being taken out from the car boot, he drove away. These are the people who will never think twice about parking in space reserved for the disabled. These people have absolutely no conscience. As long as it is convenient for them, it does not matter that the physically challenged are having a hard time because of their inconsiderate actions. They possess this herd mentality that if other people are doing it, they are entitled to do it also without thinking about the consequences.

If you are one of those drivers who often occupy parking spaces reserved for the disabled without a second thought, think again. Most normal parking lots are not spacious enough to fit a wheelchair for the disabled driver or passenger to alight and board. We are not asking for anything more than a little convenience. We are not asking for sympathies and we certainly are not asking for more than what we rightfully deserve. We are just asking that you are thoughtful to our plight. You can park your car in the many other lots available. We only have a handful reserved for us.

To the drivers of the two cars featured here, if you are not physically challenged, then I can safely assume that you are intellectually and visually impaired, meaning you are morons or blind, or both. Either way, you both do not deserve the driving licenses that were issued to you. The signs posted by the Management of the Kompleks Bukit Jambul clearly stated that the designated space is reserved exclusively for the disabled only. The four logos of the disabled painted on the wall are unmistakably visible. If you can prove that you are physically challenged, please send me an email and I will remove the respective images. Otherwise, they remain to show the world what inconsiderate humans you both are. So, which are you?

Every time I put food into my mouth, I have to be mindful that they are renal-friendly. A visit to the dietician last week has radically changed the way I eat. The visit was recommended by the urologist who wanted me to eat sensibly and reduce food that will put more stress on my impaired kidneys.

The kidneys perform several important functions to keep us healthy. They remove waste products by filtering our blood. They maintain the water balance by removing excess fluid. They maintain a healthy chemical balance in the body by removing those that are not needed.

Kidneys also produce two hormones and an enzyme. Erythropoietin stimulates the bone marrow to produce red blood cells. Calcitriol is the active form of vitamin D and helps the body absorb calcium to keep the bones healthy and strong. Renin is the enzyme that helps regulate blood pressure. I am slightly anaemic because of my renal impairment. The kidneys are not producing enough erythropoietin to stimulate a healthy growth of haemoglobin. However, that is not a cause for concern as my anaemia is mild.

A daily diet of two servings of protein is recommended. One cup of dairy milk or soya bean milk, one half cup of beans or nuts, and one matchbox-size portion of poultry, fish or meat are considered one serving. A high-protein intake produces waste in the blood. This puts a strain on the kidneys by forcing them to work harder in cleaning the blood.

I am also to go on a low-salt and low-purine diet. Food and ingredients with a good amount of salt include most sauces and preserved meats. I am one who likes a little saltiness in my food. This one regime will need a lot of self-control. I am going to miss my hams and bacons. Anchovies, prawns, roes, shellfish and sardines are among food high in purine content. I am advised to avoid high-purine food because of my higher than normal uric acid level.

However, I can eat as many servings of carbohydrates and fruits as I like. There are some vegetables that contain purine such as aparagus, dried beans, cauliflower, cabbage, lentils, mushrooms, spinach and tomatoes that I am allowed twice a week. Mushrooms are one of my favourites, especially shitake. This one needs a little discipline to adhere to.

As for fluids, I am drinking 3 liters of plain water daily which is more than sufficient. However, the dietician advised that the water intake be spread out over the entire day. I used to go on a water binge, gulping down more than 500ml of water at one go. This is another no-no as it puts a sudden strain on the kidneys which is not a good thing.

All said, this change of diet is one that I can keep to. The taboo foods will be like a luxury, one that I will recompense myself once in a long while. Although I am fond of char koay teow (fried rice noodles) and Hokkien mee (prawn noodles), I can live without them for an extended period, all for the sake of my own health. Hopefully, this will arrest, or at least decelerate, the deterioration of my kidneys.

Visits to the doctor’s clinic in the hospital were always boring affairs interspersed with long waits and depressing sights. Wuan, who had been here since last Saturday, offered to accompany me to see the urologist who first saw me for my bladder condition back in 1991 for another assessment. Her company made it more bearable.

An ultrasound scan of my kidneys was taken in the doctor’s clinic. The diagnosis: shrunken left kidney. However, there were no signs of swelling in both kidneys, which is good news in the midst of bad. A creatinine clearance test was also done to ascertain the extent of my kidney function. It was a simple test where a blood sample was taken, the serum creatinine quantified and the figure for the estimated creatinine clearance arrived at with a straightforward formula.

My estimated creatinine clearance is 47 ml/min which is categorised as moderate renal impairment. The urologist stated that I have about 60% renal function. I am to continue with my intermittent catheterisation. I was also prescribed Detrusitol for my overactive bladder.

I was previously taking Ditropan for the same problem but the side effects were interfering with my daily routine. They included drying of the eyes, mouth and skin which was further aggravated by my body’s impaired ability to regulate body temperature. That made me very uncomfortable when the weather is hot.

Eating the correct food may also help and I have to make an appointment to see the dietician for this purpose. I am scheduled for another blood test in six months. I am keeping my fingers crossed that there will be no further damage to the kidneys when I return for the follow-up appointment.