For Tan Shu Hua, it was the year that changed her life – when she was diagnosed with the very same disease. At 32, with two toddlers by her side, it started as a cramp in her right leg. Then, slowly, her body began to give way.
“I suddenly did not have the strength to play sports or exercise. I initially thought I was just not getting enough rest,” she told FMT Lifestyle.
“Then there was one night in December 2014, when I fell down out of nowhere, for no reason. My husband said how come there’s a big difference between your left and right limb? One is big, the other is small. The next day I went to my family clinic and the doctor said, ‘something is wrong’.”
After a series of medical tests, Tan was delivered the news that would change her life forever.
“I still remember, when the doctor, Prof Khean Jin Goh, told me, ‘I’m so sorry you have MND’. I said, ‘is it a joke? You must be kidding me.’”
MND is a rare and terminal neurodegenerative disorder that affects about two in every 100,000 people, most commonly those over the age of 50.
The disorder causes the progressive loss of both upper and lower motor neurons, slowly deteriorating the body’s ability to perform voluntary movements.
Life expectancy after diagnosis is typically between two to five years. Tan, however, is a rare patient who has lived with the condition for over a decade. While she can no longer walk or move her arms, her ability to eat and speak remains.
Tan currently lives with a qualified nurse by her side assisting her with every aspect of her daily life, including two massage therapy sessions every day.
The 43-year-old shared: “I am totally helpless. For example, if a mosquito lands on my hand, I need people to help me.”
Her husband, Sam Ho, remains a pillar of support through it all. Tan shared one example: “He repositions me every night. Because I totally can’t turn myself. Every night when I call him, he will surely wake up to reposition me, no matter how tired he is.”
Her two children, who were just toddlers when she was diagnosed, are now teenagers, and fully aware that their mother may leave this world sooner than most.
“I told my daughter that when I pass away, I want to throw all my ashes into the sea. But my girl asked me, ‘mummy can I keep a little bit as a necklace?’”
Fighting back tears, she shared that her children treat her like any other mother, though she knows her body tells a different story.
“They’ve asked me: ‘mummy when will you recover? Can I run together with you? Can we swim together?’’’
And she tells them with a smile on her face: “Well I cannot run with you, but you can push my wheelchair.”
She may be battling a terminal illness, but her joy and smile remain untouched.
“I think I have the passion to live life. Passion is very important. Even if I’m going to do my grocery shopping, I feel very happy. It’s enough for me. Because I’m still able to see this world, still able see the sun, feel the wind. After I got this disease, I feel more appreciative of even the small things,” Tan said.
During the pandemic, she created the “OK I Love You” Facebook page to share her journey with MND. Now with over 10,000 followers, Tan has been appointed as ambassador for the MND Malaysia non-profit organisation.
“I thought, if God chose me, of course there’s a reason. So why don’t I accept it? I hate it, but I also love it. It gives me a different life compared to other people’s.”
With others in Malaysia also battling MND, it is a stark reminder that everyone has their struggles – some more unimaginable than others.
To support MND Malaysia or learn more, visit mndmalaysia.org