PETALING JAYA: For the past two decades, Nisshaa Muniandy has been suffering from a crippling neurological disorder that stops her from leading an ordinary life.
Diagnosed at age 17 with dystonia, a rare condition that causes involuntary muscle contractions, Nisshaa is in constant pain and struggles to do everyday tasks.
To cope, she has found comfort in writing – specifically poetry, through which she is able to express the challenges she faces and the emotions brought about by her condition.
“When you are disabled you can’t do much. How do you express yourself? I am lucky I found writing,” she told FMT Lifestyle recently.
“It has given me so much happiness. I have written so much poetry and I hope to publish them one day.”
The 27-year-old, who is a part-time secondary-school teacher, shared that she is usually exhausted after a day at work as she has to stand a lot.
“I want to do more for my students but I am physically limited. But they understand,” she said warmly.
Nisshaa revealed that her condition started in her left arm when she was six, but progressively worsened to the point that she was bedridden twice in her 20s.
“I am in pain throughout the day. It’s crazy. I cry some nights because of my back pain,” she said, adding that the condition “is spreading to my legs now”.
Quiet and reserved in her childhood, she sought solace in the sanctuary of the library throughout primary and secondary school. During her college years, she became more sociable and said she was able to find acceptance among her peers, who looked beyond her condition.
Nisshaa eventually graduated from Universiti Malaya with a degree in Teaching English as a Second Language and a master’s in English Language Studies.
“When I was in my early 20s, I began to accept myself, my condition. I felt acceptance was the key to making my own way.
“I am enough,” she declared, adding that, when people made fun of her, she would turn the other cheek. “Your judgment is nothing compared to my pain.”
Deep Brain Stimulation
Nisshaa has been on medication for the past 10 years, and has even turned to physiotherapy and acupuncture to relieve her pain, but these were not enough to manage her symptoms.
Then last month, her doctors told her about a surgical treatment known as Deep Brain Stimulation (DBS), which could alleviate 50% of her pain. However, the effects will only be seen after a year.
The minimally invasive procedure involves implanting electrodes that send electrical signals to the part of the brain that controls movement, reducing involuntary muscle contractions.
The amount of stimulation is controlled by a pacemaker-like device placed under the skin in the upper chest.
To fund the RM68,000 surgery, Nisshaa reached out to the public via social media to ask for help. This included the cost of a second-hand battery for the pacemaker, which would last for up to eight years, without insurance.
Much to Nisshaa’s surprise, the response to her campaign has been “overwhelming” and, within a short time, she was able to meet and surpass her goal.
As of press time, the donations are closing in on RM94,000.
“People are amazing. They are so kind. I was so touched that they would be willing to give cash to someone they didn’t know,” she said gratefully.
Nisshaa has now set her sights on raising RM100,000, with which she will be able to get a pacemaker with a brand-new battery that can last up to 15 years, with insurance.
And after her surgery, she hopes to publish her poetry and donate the proceeds from the sales to others who face similar challenges.
Those who wish to help Nisshaa reach her goal of RM100,000 can donate here.
Keep up to date on her progress by following her on Instagram.