My first epilepsy episode 10 years ago

The Star Paper Thursday September 15, 2011

Overcoming hurdles from a disabled person’s point of view

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BY JACKIE NG

A little fortitude can take one through unexpected twists in life.

MY body convulsed violently and the table which I was holding on to, shook as if it was hit by an earthquake. It was the first time I had experienced a seizure, and I was as shocked as my colleagues.

After I had recovered sufficiently, I was rushed to the hospital. When I regained consciousness, I spoke incoherently. I felt very weak and could not even walk on my own. Though the whole episode lasted less than five minutes, it changed my life from that day.

Later I found out that what I had experienced was a type of seizure which is common in those with epilepsy. It could be due to a lesion in the brain or some other neurological problem. The only way to keep the condition in check is through anti-convulsion drugs.

The epileptic attack took place six months after stereotactic radiosurgery to treat a residual tumour in the brain. (Stereotactic radiosurgery is a highly precise form of radiation therapy which focuses on a specific area of the brain. Some years prior to the treatment, I had undergone an operation to remove a tumour in the brain.)

It has been 10 years since I had the first epilectic attack. I manage my condition through medication but the weakened side of my body never recovered.

According to the physiotherapist, it was due to the loss of strength and control over some muscle groups.

There were many dark days as I struggled with self-denial and depression, before I finally came to terms with the fact that I may have to live with what the doctors termed as progressive paralysis of the right side of the body.

After months of diligent physiotherapy, I managed to slow down the progress of the paralysis and regained some muscle strength.

I have come a long way from the early days when I was bed-bound most of the time. I learnt to use the walker, and later the wheelchair which gave me a certain newfound freedom. I can now move around more independently and with a certain measure of ease and speed.

It isn’t easy learning to live with a disability. There was times when the challenges seemed insurmountable. Trying to live with accessible facilities or the lack of it is a norm for the disabled community in the country.

Logistics is always an issue in any outing. I rely mostly on taxis for transport. Sad to say, some taxi drivers would not stop for me. Some pretended that they did not see me when I tried to wave down a taxi.

Then there are taxi drivers who take advantage of disabled passengers. They charge extra for boot usage despite a ruling from the Commercial Vehicle Licensing Board (LPKP) that there should be no extra charges under the new fare system.

Once when I complained about the charges and tried to jot down the cabbie’s particulars so that I could lodge a complaint with LPKP later, the driver ticked me off when he realised what I was trying to do.

Feeling vulnerable and afraid that I would be harmed, I alighted without taking the cab’s particulars.

Like any other shopper, I enjoy retail therapy once in a while. I like to hang out at Suria KLCC because of its disabled-friendly facilities. But there’s one thing that baffles me: the toilets for the disabled are always locked. I have to ask the cleaners to unlock the toilet each time I need to use it. However, not every cleaner has the key!

As all the cleaners are either Indonesians or Bangladeshis, they are not around between 12.45pm and 2.45pm on Fridays as they need to go to the mosque for prayers, so I avoid visiting this premier shopping mall on Fridays.

I also like to shop at Jusco because it is well-equipped with facilities for the disabled.

Just like any abled-bodied person, the disabled enjoy the simple pleasures of life.

We make the best of our circumstances, and are thankful for the blessings that come our way.

Many of the hurdles in our path are man-made. With a little more empathy from society, we hope to overcome barriers and push into new frontiers.