I met a real-life Santarina

Someone once told me that teachers are often remembered most by the kindness they show to their students, rather than the knowledge they impart to them.
 

If that's true, then it must also apply to hospitals, doctors - and especially nurses.

There is this one particular nurse who always comes to mind whenever I think of hospitals.

And although it has been nearly 45 years since I last saw her, it still feels as if my encounter with her was only yesterday.

I had been in hospital for nearly three months. I was only a boy of ten, then.

The doctors had put a plaster cast on me, from my chest right down to my foot. This was after a surgery which proved to be a total failure on the surgeon's part.

I was completely bedridden. I could not sit up but had to lie flat on my bed. I could not even turn from one side to  the other without the nurses' help owing to the weight and size of the cast.

During the length of my stay, I had to suffer the humiliation of having a bed pan and urinal brought to me in order for me to answer the call of nature.

It isn't difficult to imagine how a boy my age could quickly get depressed in the paediatric ward.

I felt that my family had betrayed and deserted me in the hospital even though they did come to visit. The surgeon who had performed the operation hardly had time to speak to me whenever he came over during his ward rounds.

I longed for at least a few moments with him. I wanted to know from the horse's mouth why I had become permanently paralysed after the surgery - and what I was to do with my life from then on.

But he continued to avoid me. When he did come by for a brief moment or two, it was always he who did the talking. I was forced to do the listening and swallow all my questions.

I continued to lie there on my bed. I could only see the ceiling fan spinning around and hear the sounds of the other patients and medical staff going about their business in the ward.

I became so frustrated that I threw the jigsaw puzzles and toys at the volunteer visitors who came by twice a week to spend some time with the patients.

And then came Nurse Smith.

She was a foreigner who was temporarily in the ward as part of an exchange programme.

Smith was the only nurse who cared enough to talk about my feelings as she attended to me.

One day, she noticed an unopened gift on my locker.

I told her it was a great battery-operated toy buggy which a relative had bought for me that day.

"I was told that it not only comes with flashing lights but it has a system that would make the motorised object turn around and go the other way when it bumps into things," I explained.

My relative had also said that because of the position I was in, I should wait until I got better and went home to test it out. "Besides, the hospital wouldn't allow you to operate it here," the relative had added.

"I have an idea," Nurse Smith said with a twinkle in her eye. "I'll see you later when my shift is over."

As promised, Nurse Smith turned up at 10.30pm.

Much to my delight, she helped me open my present.

My face just lit up like a Christmas tree the moment I saw the beautiful buggy car.

She then took out a fresh pair of batteries which she had bought and inserted them into the toy.

Nurse Smith carried the car up to my face. After allowing me to touch and inspect the car charged with its electronic capabilities, she put it on the floor.

Sure enough, it had a reflex action which made it turn around in another direction when it bumped into objects like my hospital locker, the wheels of my bed and the movable stand tray.

Although I could not see what was happening, Nurse Smith gave me a "running commentary" of the scene. Her voice slowly turned louder and louder until the buggy was halfway across the ward from where I was!         

After about 15 to 20 minutes or so, she picked up the toy and placed it back in its box. "It's time to let the other patients sleep," she told me with a big smile.

I was so happy that she had taken the time and trouble - as well as defied the hospital's rules for a moment - to let me enjoy my relative's present.

Needless to say, we became chums after that.

Nurse Smith would pop by each time after her duty was over to have a chat with me.

Even though she didn't have the answers that I was looking for from my doctor, she took time to listen to a 10-year-old boy's anxieties and fears about growing up as a person with a disability.

Nurse Smith had to leave the hospital and the country after a few weeks. I never saw her again.

But she had left only after being the best Santarina that any boy could have met in a lifetime.

An unpredictable and disabled condition

An unpredictable and disabling condition -Anthony Thanasayan

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Created on Thursday, 18 December 2014 07:00

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Written by Anthony Thanasayan

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Multiple Sclerosis - or 'MS' in short - is a disease that most people are scared about.

That is because it is an unpredictable, and often, disabling condition of the central nervous system.

It not only disrupts the flow of information within the brain, but also between the brain and the body - causing the body to go haywire.

Because MS is a complex disease, every person's experience of it is different.

Some experience vision loss, problems with balance, itching and more. Others have pain or numbness which can lead to serious paralysis.

More women are affected by MS than men.

The first symptoms often start between the ages of 20 and 40. Most people with MS have attacks - also called relapses - when the condition gets noticeably worse.

They’re usually followed by times of recovery, when symptoms improve. For others, the disease just gets worse over time.

There is no cure for the condition, only treatment on how to manage the symptoms by preventing relapses and slowing down the effects of the disease.

Although MS is common in Western countries, it is rare in our part of the world.

An estimated one or two for every 100,000 population in Malaysia have the condition.

One Malaysian, who knows MS well, is 37-year-old Keshvinder Kaur. She hails from Subang Jaya in the state of Selangor.

"Kesh", as most of her friends call her, knows about MS because she has the disease. She was diagnosed with it in 2004, a decade ago.

MS changed her life drastically.

Her symptoms began first with numbness in her legs. She also had problems in balancing herself resulting in falls. She also had incontinence and, most of all, fatigue.

"I found myself strangely tired all the time," Kesh told me over a chat session last week. The constant attacks on her nerves and body made her unable to walk properly.

She had to depend on a walking aid. 

Today, Kesh is in a wheelchair.

Funnily enough, Kesh pointed out, it is more of a positive thing rather than a negative.

"Somehow, I find myself to be more active and less tired compared to before. It’s all in the mind," she laughed.

Kesh said she is never happier than when she has the opportunity to be in the company of people like herself.

She did exactly that, last weekend.

Kesh attended a family day event with some 50 persons suffering from MS, and with their caregivers tagging along. It was held in Petaling Jaya last Saturday.

"It was not a 'typical reaction' that the 'uninitiated' would imagine at an MS gathering," explained a beaming Kesh.

"The moment anyone stepped in, they were greeted by a busy, chattering and laughing crowd.

"Everyone was moving around and pampering themselves, meeting new faces, catching up with old ones, and simply having a terrific time.

"For the MS patients who find themselves stuck at home for most of the time, it was a godsend to get out of the house for a while.

"The few of us, like me, who 'turned up' in our wheelchairs, were delighted that the organisers had made it a point to have the event in a wheelchair-accessible venue.

"So this was a good opportunity for us to come together and break away from our regular routine and enjoy ourselves!" added Kesh.

Kesh went on to point out that whilst all the group had to do was have fun at the half-day event, which ended up with a hearty lunch, a serious talk on health was also part of the agenda that morning.

It was presented by a clinical psychologist, the guest speaker for the day.

"The topic was quite bizarre, and at the same time, most interesting: 'Mental Hygiene'!

"Most of us had never heard of such a term. However, we were all impressed with how the speaker managed to encourage us - whether disabled or able-bodied - to get rid of all the negative thoughts in our minds.

"He then went on to inspire us to rediscover our true selves in order to realise who we really are as individuals and humans.

"At first, it was confusing. However, as the talk progressed, we got a clearer understanding of what the speaker was driving at - a positive mind complements a healthy body."

After the talk was when the FUN part began.

A clown showed up and soon left the kids and adults in stitches with his antics and jokes.

"The adults forgot themselves for a few fleeting moments and ended up with balloons in their hands, beaming from ear to ear just like the kids - including me!" said Kesh.

"We were all practising the 'good mental hygiene' thingy by being happy and positive - and most important of all, staying on top of MS always!" concluded Kesh.

Last Saturday's event was organised by the Multiple Sclerosis Society of Malaysia. To find out more about MS, please visit its Facebook page:

http://on.fb.me/1xrlHvK

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A long, long way to go for the disabled in Malaysia

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Created on Thursday, 11 December 2014 08:18

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Written by Anthony Thanasayan

Category: Columnist

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Last week, more than one billion of the world's population of disabled people - now billed as the largest minority group in every society of the globe - celebrated 'International Day of Persons with Disabilities' (IDPD).

This was on December 3.

Two major local events were held during the same time, in conjunction with the international occasion.

They left us as disability advocates with plenty to think about, when they were over.

Especially so, in the area of improvements and priorities, when someone decides to organise an event involving disabled persons.

Here are the 'high and low' points of both occasions, followed by what can and should be done in future, to improve such events.  

1) The IDPD celebration organised (amongst others) by the National Welfare Department (JKM) and the Seremban Municipal Council of Negeri Sembilan (MPSNS):

 Great part: Spreading the IDPD cause outside KL 

This was a most positive effort by JKM. The IDPD message of disabled welfare and rights badly needs to be heard in every state of the nation, instead of frequently in KL and Selangor alone.

Kudos to JKM for holding the event in the MPSNS. This will certainly inspire the municipality there to do more in terms of accessibility for its disabled residents.

It will also likely have a snowballing effect in other states, so that more disabled people and local councils in the country can be empowered through IDPD's events.

By the way, this is not to say that JKM has never held an IDPD occasion outside Kuala Lumpur. It has.

But the point is it should now start holding many more in every other state, before returning to the capital city.

Bad part: Wheelchair users' needs sidelined 

With more than 2000 people attending the whole-day event (the exhibition was from 8.30am and the official ceremony, in the afternoon,), more consideration should have been given to the physically disabled. Regretfully, not so.

At least ten members of the Independent Living and Training Centre, Malaysia (ILTC) from Rawang, Selangor, who came in wheelchairs and had walking difficulties, complained about it.

They said that, unlike that provided for the VIPs, not a single car park was reserved for disabled drivers next to the venue.

In fact, they could not find any wheelchair-logo car parks anywhere! So, the handicapped guests had to park outside the council hall and compound.

Some even had to park their vehicles a kilometre away. From there, they were forced to wheel themselves up and down the steep slopes on the way to the venue.

Some of the others had tried to park inside the compound of the council but were promptly shooed away by the police. This caused unpleasant arguments to erupt - the last thing that anyone would want to experience on a day of celebration.

Inside, they experienced further barriers.

Physically-handicapped guests had no access to all the activities that were going on, simply because their wheelchairs was unable to get near them.

They had no choice but to sit in a restricted corner and watch the events going on in the council's open field. It was no fun being spectators instead of active participants.

The toilets for the disabled were at least 500 metres away. No volunteers had been designated to help in pushing the wheelchairs that distance.

At least a couple of disabled women even fell off their wheelchairs. This was because of the poorly- constructed ramps in the hostile environment.

"It was clear the organisers didn't go all the way to think about our needs. They were obviously more interested in seeing to the able-bodied VIPs' convenience, rather than ours," lamented Francis Siva, president of the ILTC.

"How could it be a called a 'celebration' for us when we suffered so much - especially driving all the way that day for about 180 kilometres from Rawang to Seremban, and then, having to head back home again?" he added.

"To make matters worse, the disabled senator who uses a wheelchair was notably not present to witness what was happening on such an important occasion as the IDPD," Siva concluded.

  

2) The Fifth Asia-Pacific Network for Accessible Tourism jointly organised by the Petaling Jaya City Council (MBPJ) and Beautiful Gate Foundation in Selangor:

Great part: Definitely a most worthy event                                                                                                                                                 The event featured top global authority speakers on universal designs that included disabled persons in everything. 

With more than 20 countries participating (UK, Jordan, India, Philippines and more), this was an excellent opportunity for Malaysia to meet and see how nations and societies the world over are rushing and working against time to prepare themselves for the increasing population of elderly persons, who will have one type of disability or another.

It was also a terrific chance for MBPJ - with several international and local awards on disability access and projects behind them (the latest one from Seremban's IDPD 2014 event) - to showcase their achievements, which they did at ICAT during site visits.

I heard the overseas delegates were pretty impressed with what they saw. Some of them commented that PJ had "outdone" some of the local councils in their own countries, in terms of the blind and wheelchair accessibility in parks.

Bad part: Poor crowd and mostly the wrong audience 

The key persons, such as representatives from the Tourism Board, government officials, local councils, hotels, architects, developers, simply weren't there to take in all the valuable information. 

They also missed, in particular, finding out about the latest state-of-the-art adaptable designs and facilities used in other countries.

Their presence was absolutely critical if things are to significantly change in the quality of life for all disabled persons in the country.

Petaling Jaya was also, perhaps, not the best choice for a pivotal event like this. KL would have been a better venue for far-reaching results.

The audience, in the end, other than the international participants, was largely made up of local and ordinary disabled persons and able-bodied volunteers, people not in positions of authority to bring about changes.

One participant observed that it was a more "daycare centre-like" event, than anything business-like or professional.

Finally, and curiously, the international delegates of ICAT were brought to a session of a local animal rescue adoption programme that featured a couple of paralysed canines on wheels, purportedly "to celebrate IDPD".

If true, I'm seriously puzzled by this.

What have handicapped dogs got to do with disabled people, other than the obvious fact of trying to get sympathy from the public in order to fill up the coffers of the NGO for animals?

Or is there a new disability-advocacy movement somewhere which I don't know about, to also champion "wheelchair access" for dogs with disabilities at airports, train stations, hotels and tourist spots?

Whatever the case, the painful truth is that human beings who are disabled have still light years more to go for ICAT's noble vision to become a reality.

    

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'Roving Angels' help in AIDS awareness campaign

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Created on Tuesday, 02 December 2014 15:04

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Written by Anthony Thanasayan

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More than 10,000 shoppers who patronised two of Kuala Lumpur's hottest public venues in the city last Saturday - Nu Sentral and KL Sentral Station - unexpectedly found themselves learning more about HIV and the deadly disease AIDS.
   
Rather than it being a scary occasion, shoppers from all walks of life, including people with disabilities, were pleasantly surprised to enter a happy, carnival-like mood and atmosphere, which made the whole experience fun and engaging. 
Close to 100 dedicated volunteers called ‘Roving Angels’ approached curious shoppers and onlookers with their message of hope.
Another hundred stayed put in their special booths or were seen running around to ensure that the event kept its momentum.
Each shopper received a red ribbon by a Roving Angel to announce the celebration of World AIDS Day on Dec 1.
Others were invited to support the ongoing work with HIV and AIDS.
Quite a few preferred to make a donation; others decided to make an appointment in order to get themselves tested for HIV and AIDS.
Soon, the shoppers and travellers in the shopping mall and train station became more visible with their purchase of red ribbons, flyers and other merchandise.
They wore them to show the public that they were against discrimination of people who have the disease.
The brainchild of the event, 'Wishing for Zero (in new HIV infections in the future)' was the PT Foundation - a KL-based, non-profit, community-based organisation aiming to provide information, education and care services relating to HIV/AIDS and sexuality in Malaysia.
It featured a full day of activities from 10am to 8pm. There were information booths around the mall to offer accurate and comprehensive information on HIV and AIDS.
Members of the public were also given the opportunity to obtain free vouchers for fully-confidential tests for HIV and other sexually-transmitted infections by taking part in HIV quizzes. 
The launch, which was held at midday, was sponsored by CIMB Foundation. They presented a mock cheque donation of RM107,400 during the ceremony.
Speaking to the crowd, PT Foundation Chairman Hisham revealed that there were "more than 80,000 (Malaysians) with HIV in the country".
"We stand (united) in solidarity (with them)," he added in his spirited speech.
"For more than 25 years, PT Foundation has been working on the front line in the fight against HIV and AIDS in Malaysia," Hisham went on.
"The good news is that in the past ten years, we have seen a decline in new HIV cases in the country.
"In a decade, the number of new infections annually has been halved - a major achievement as a result of years of commitment, bold decision-making and solid funding."
The PT Foundation's chief, however, pointed out that the encouraging news did not mean that there was no reason for concern.
"The bad news is that the fight is not over," he cautioned.
"While Malaysia has been successful in combating the virus through bold and effective harm reduction programmes which distribute clean needles and provide methadone therapy, it has been less effective in addressing sexual transmission of HIV. 
"Every day about 10 Malaysians test positive for HIV and more than 70 percent of all new infections have occurred through sexual transmission."
Emphasising the need for undergoing an HIV test, Hisham said it is the only way to find out if a person is infected with the virus or not.
"Most Malaysians do not talk about HIV or AIDS. Those living with HIV and who do not know it are infecting other people with the disease.
"Nowadays, for every four men newly-infected with HIV, one woman is infected.
"In 2013, 34 percent of new HIV infections were reported in young people between 13 years and 29 years of age.
"This is an alarming trend and we need to do more to turn the tide. We need to aim for zero new infections."
Hisham said the HIV epidemic presents new challenges which require renewed commitment, courage and vision.
"Malaysians get infected with HIV every day. The epidemic is not yet over, and more work needs to be done," he concluded.
Other VIP representatives at the weekend launch included the World Health Organisation to Malaysia, Brunei Darussalam and Singapore, the Malaysia AIDS Council, Durex Malaysia and Singapore and Group Retail Asset Development.
For everyone at the event, the message, although stark, was poignantly urgent: the fight against HIV and AIDS can be won.