Hilda takes care of her husband out of love.
WHEN talking about turning a crisis into opportunities, there is an endless list of motivational quotes to cite from.
While maxims and adages are powerful motivators, retired accountant Josh John does not pore over them to drive home a point. Rather, he counts on his wealth of real life experiences to deal with emergency situations — like the way he overcame a crisis and turned it into an opportunity to do something good.
Paralysed from the chest down and confined to a wheelchair, the 54-year-old has resolved to never wallow in self-pity and hopelessness but to bravely carry on living and not letting his affliction prevent him from doing what he loves. He has even made the effort to do some charity work.
Josh said his condition should be more accurately termed as Guillain-Barre Syndrome although it has also been diagnosed as Transverse Myelitis (TM).
According to medical authourities, Guillain-Barre Syndrome is “a condition in which the immune system attacks the nerves” while Transverse Myelitis is “a disorder, caused by inflammation of the spinal cord and characterised by symptoms and signs of neurologic dysfunction in motor and sensory tracts on both sides of the spinal cord”.
Josh’s spinal tissue damage, caused by a viral infection, is about 20cm long.
“Honestly, if this kind of misfortune had not struck me, most probably my life would have been so preoccupied with career and other responsibilities that it would have left me with no time or energy to think of doing charity,” he said.
“Now that I have all the time in the world, I am able to see, observe and identify areas where I can make myself useful to society in spite of my own physical disability. I have friends — kind and generous friends. So don’t I help raise funds from them for charity? After all, I’m also in a St Joseph’s Cathedral’s group called GROWTH (Grow with the Handicapped) which is a lay organisation that ministers to people with disabilities.”
Josh said many of his schoolmates, who have become successful in life, are all very supportive of efforts to give back to society.
Doing charities
Asked how much charity work he has done so far, he admitted to losing count but a few more recent ones included giving stationery to rural primary school children from money raised among his schoolmates. Among the recipients were 103 students from SK Abang Buyuk Jerijeh in Belawai, more than 40 from SJK Chung Hua Bangkong in Lachau, Sri Aman, and 20 from SK Serasot in Bau.
“Belawai is a tranquil and peaceful township. What prompted me to do something for the school there was a simple incident. My wife (Hilda Hasmah Kiai) has a grand-nephew studying in this school. One day, she presented a box of colour pencils to the little boy. When he brought his gift to school, his classmates all said they liked it very much. They admired the product of such good quality which cost about RM20.
“When my wife and I came to know about it, we were very touched. I thought this was my chance, in a small way, to make some children happy, perhaps even motivating them to study hard. So, I raised the money to buy stationery for them,” Josh recollected.
He shared another story about a couple he met when he was warded at the Sarawak General Hospital. The husband was at the hospital clinic for a bedsore dressing. Although only in his 30’s, he already had both legs amputated due to diabetes. His head was also bandaged.
Josh spoke to the man who told him he worked as a lorry driver, transporting goods, and he only found out he had diabetes when the blisters on his feet seemed to not heal properly. He got the blisters from wearing his work boots, which were too tight.
Josh asked the man how he and his wife were coping and was told the couple got some help from the Welfare Department and the wife is a daily paid worker at a coffeeshop.
The man said his wife would not be able to work on days when she had to accompany him to the hospital. He also said he had difficulties moving around and expressed the wish to have a wheelchair.
Right after he was discharged, Josh felt in his heart he must do something to help the man. So he logged onto his WhatsApp group chat to inform his former schoolmates of the couple’s plight. In no time, one of his friends responded with a pledge to donate a wheelchair for the man.
Josh knew the couple had to go back to the hospital as the man still needed medical care. So when he and his friend went to the hospital with a wheelchair, they found the couple still around.
“My friend presented the wheelchair to the man and also gave him some cash. The couple were speechless and shed tears of gratitude,” Josh recalled.
Josh and his wife during their younger days.
Room for improvement
Asked about the challenges he faced as a wheelchair user, he said there is certainly still room for improvement to make “our city and country more friendly towards the handicapped”.
He noted that while there are already many places with ramps built for wheelchair users, there are still many more that do not provide such facilities to people with physical immobility.
“What’s most disheartening is the general attitude of the public,” he added.
“I often come across obstruction, caused by vehicles, parked in such a way that it’s impossible for wheelchair users to get to the place they want to go. The vehicles are parked either at the lots, reserved for the handicapped, or randomly near these lots as to deny the handicapped the right of way.
“Perhaps, these vehicle owners only care about themselves, thinking they are not breaking any law by parking near the space meant for the handicapped. But common sense should tell them they are blocking the way and causing unnecessary inconvenience to handicapped people.”
According to Josh, in Kuching, such a situation is often seen around the food court areas of commercial centres and at the airport. For instance, outside the arrival hall of the airport are two parking slots reserved for OKU (disabled people) but vehicles are always blocking the way into these slots. Moreover, while ramps for wheelchairs are built at some places, there are no signboards to indicate their existence.
He pointed out that most vehicle owners thought they were entitled to park at the space reserved for the handicapped so long as they brought along a handicapped person or elderly passenger.
“What they could do is stop their vehicles to drop their handicapped or elderly passenger, then park elsewhere instead of at the places reserved for the OKU drivers,” he said, adding that this is the universal rule many did not seem to know.
Josh noticed that the Sarawak General Hospital is the only place that strictly follows this rule — with guards to oversee the situation.
He felt there are still improvements that could be made to make the towns and cities better places to live in such as by providing appropriate facilities for the handicapped, the frail and the aged.
“Our shopping malls, for example, should have ample benches for elderly patrons to sit and rest after they get tired walking around. I used to love travelling but now have to think carefully before doing so — I need to see where I intend to go. I find Australia and Singapore among the places that are quite disabled-friendly.”
His illness
On his illness, Josh said he first experienced the early signs of discomfort — coughing, appetite loss and bladder retention — in 1995.
It began one night when he and a few co-workers were driving down from Bintulu to Kuching to bring their company’s car to the capital during the Christmas holidays. His wife, who was expecting their first child, took the flight as she found the long overland journey taxing.
Josh’s colleague drove from Bintulu to Selangau and he took over from Selangau to Sarikei. While driving, he started to feel really uncomfortable. To take a much needed nap, he let a sub-contractor friend drive in his place.
Despite feeling terrible, Josh still managed to drive home to Kenyalang Park. Two fellow travellers got off earlier at Mile 7 and Tabuan Desa.
The next day was Christmas Day and he tried to celebrate by visiting a few friends. But by Boxing Day, he could no longer ignore his ailing condition — he knew he should seek medical attention.
He went to a clinic. The doctor checked him for Dengue and found he wasn’t suffering from the disease. His urine was subsequently tested and soon after, he found he was unable to urinate although his bladder felt like bursting.
Not wanting to delay any further, he went to Sarawak General Hospital that night and after getting an injection, was allowed to go home. But he still had difficulty passing urine. So he returned to the hospital and the doctor told him the next course of action would be for him to put in a catheter — with a warning that it was going to be very painful.
He went home but his condition got worse. So he went back to the hospital for the third time, and was then admitted. He also had to use the catheter to drain his urine.
The doctors noticed he was getting weaker and decided to keep him overnight. They did a lumbar puncture, a procedure to collect and study the cerebrospinal fluid to determine what caused Josh’s limbs to become so weak. But they could not find anything.
Josh said during the lumbar puncture, they inserted a needle into the spinal canal low on his back (lumbar area). After that, he discovered he could not move his toes. That was when he knew something had gone very wrong.
Josh sought second opinions from several other doctors and one told him his lumbar puncture could have been done at the wrong point, causing some damage. But others thought the mistake was not possible.
By Dec 28, Josh found he totally could not move his legs while the doctors at the Sarawak General Hospital continued to run test after test to determine the cause.
Later, his parents got him discharged and transferred him to a private hospital. He was put in ICU for one week, then in the normal ward for another week. After two weeks, he asked to go home. The catheter was taken off and he again started to suffer from urine retention which became worse at night. Eventually, he was taken back to the Sarawak General Hospital in an ambulance. He put the catheter back in and was given antibiotics. From then on, he had to live with a urine bag hanging by his side.
Josh with children of SJK Chung Hua Bangkong in Lachau.
Becoming paralysed
Josh said he became paralysed when he was 32. Now, when he wants to sit up, he needs support to prevent him from falling over.
He added that while the doctors first suspected his problem was Guillain-Barre Syndrome, and the numbness he felt could be just temporary — from three months up to a year — he could sense he would have to live with his affliction permanently.
Josh fights depression by adopting a simple philosophy — if there is something wrong with me medically, it’s not my problem but the doctors’ problem.
He said he has accepted his situation as fate. He also tries to stay as positive as possible.
In fact, when he was first told of his condition, he had just gotten married and a baby (daughter) was on the way.
“When my daughter was growing up, she asked a lot of questions out of curiosity, especially after seeing my old photos. The questions sometimes brought tears to my eyes. As for my mother, for the first few years, she could hardly accept her son, who used to be so active and so healthy, could suddenly become immobilised.”
On the kind of treatment he got from the public, he said people were generally sympathetic and helpful towards him and he never faced any discrimination.
He does, however, get curious stares from little children. Some even think it must be fun sitting and moving around in a wheelchair.
Josh used to play badminton and was a hasher in Temburong, Brunei, where he taught in a secondary school for four and half years. But these activities now remain only as fond memories.
“I will never forget the feeling of holding my newborn baby girl for the first time. I knew one day my only daughter would grow up and we eventually would have to ‘give her up’ if she chooses to get married. I’m sad to think I will not be able to walk her down the aisle.
“After my daughter was born, I always had the burning desire to put her in a stroller and walk her in the park but what could I do in my condition — except to hold her in my arms and let her sit on my lap when we went out. Of course, she was then still too young to understand anything.”
His daughter is already 20, and reading law in Kuala Lumpur, and according to Josh, is quite an outspoken person.
“We all have our own destinies in life. I look at my own life positively. But what I can say is one must not always take things for granted. A person’s life can suddenly change for better or worse in a blink of an eye,” he said.
Josh noted there were people who were often overlooked even though they deserved a lot of empathy and support — in some cases, even more than the disabled people themselves. These are the caregivers who are either the spouses, parents or other family members of the disabled.
“They are the ones who have devoted so much of their time looking after their disabled loved ones — like dressing them, feeding them, giving them a bath and helping them with toilet needs. These are things nobody wants to do if given a choice.
“I consider myself very lucky to have my loving wife as my caregiver. She fastens my buttons, helps me put on my socks and with my shower chair, makes sure I eat well and also does all the housework without any help.
Yet, she is reluctant to be complimented as my caregiver but insists she takes care of me out of love. How can I ever thank her enough?” he said.