The upside down world of multiple sclerosis

As a disabled activist, it isn't often that I come across people who are disabled who tell me they are not handicapped – especially when they really are.

A new person by the name of TW whom I befriended on the telephone the other day told me that I caught her by surprise when I referred to her as "a person with a disability".

My labelling of her, she said, at first startled her little. But then, it also provoked her to think deeper about her life and what she was going through. 

Though it is true that she lives with a chronic illness called "multiple sclerosis" (MS), typically viewed as a disability, her personal view of herself is far from "disabled". 

MS is a neurodegenerative autoimmune disease. The type which TW has is the relapsing-remitting one, where there is a period of time when her illness is less severe.

Simply put, TW's immune system self-mutilates the insulation of her brain and spinal cord, denying her the best electric supply in all parts of her body.

There is currently no cure for MS which can affect any part of the body.

TW says even though she can understand why people regard her as  disabled, she still refuses to be considered as such.  

During her teens, she started experiencing early symptoms like pins and needles, cramps, dizziness, ringing in her ears and others, but never took them seriously.

Even her general practitioner told her it was nothing for her to worry about.

One day though, she noticed that her eyes were not moving normally. Her vision suddenly had a wider range, like that of a frog.

The specialists she consulted were initially puzzled, until a MRI test hinted at MS.

But by then, TW's symptoms had disappeared and she laughed the whole episode off. A Google check furthermore said "Asians never got MS" and that it was purely "a Caucasian disease".

Life went on quite normally until TW said she had even forgotten what her neurologist looked like.

Three years later, however, she found herself staring at the ugly face of MS again – this time with absolute certainly.

TW had lost the sensation in her legs even though she had no trouble walking. She was just unable to feel the shoes on her feet or the jeans she was wearing.

Fortunately, the sensations came back after a treatment of steroids. She had to take half a day’s leave from work for three days until her symptoms disappeared. 

Though TW's condition is on the milder end of the spectrum compared to others, MS is no walk in the park. 

She still has episodes or flares which thankfully reverse in time with the help of steroids.

There are days though when she feels more symptoms – fatigue, short bursts of piercing pain, tingling in her arms and legs, loss of concentration and sometimes even the ability to say the right words during a conversation.

Then there are sweet days where she "forgets" that she has MS.

Keeping cool, drinking lots of water, maintaining a healthy diet and following a regular exercise regime make such good days more frequent, she says.

At present, TW doesn't see her MS as a "permanent disability" because the future is still unwritten for her.

Many others with MS have very different stories to tell.

They may face different symptoms. And many of them have been diagnosed with more aggressive and limiting symptoms which sometimes do not go away.

Some people start at the mild end and in time progress to more serious limitations. Some people just continue to have a mild disease for the rest of their life.

TW says there is one thing that all people with MS share, regardless of their disease's severity – the uncertainty of the future.

While life is innately uncertain for all humans, people with MS tend to be more in touch with this sense of uncertainty on a more regular basis.

There are stories of people who can tell when an episode is brewing inside them.

Then, there are also stories of people waking up to life-altering changes without any warning signs, and others who have had no further events after their diagnosis.

As one can imagine, living with MS is a life disruption. It forces life down a divergent route.

A lot of people with MS are suddenly forced down on their tracks, kicking and screaming.

But with time, coupled with good support and acceptance, the life diversion starts to look more like new opportunities.

Persons with MS often see life with a new set of eyes. Its uncertainty teaches them to be more grateful and appreciative of each day as it comes – to live in the moment.

It's all about resilience and a fighting spirit.

MS also sometimes becomes a calling. 

For TW, she insists she is not disabled. She just happens to live with a chronic illness.

Like for so many others, TW says MS turned her world upside down when it first arrived.

Though she is "differently-abled" now, she is still able to accomplish great things in life in her own unique way with help from friends and support around her. – January 11, 2016.

* This is the personal opinion of the writer or publication and does not necessarily represent the views of The Malaysian Insider.