A Message from MND Malaysia’s Ambassador
I am 38 years old and was diagnosed with Amyotrophic Lateral Sclerosis / Motor Neurone Disease (ALS/MND) in December 2014 at University Malaya Medical Centre (UMMC). This year is my sixth year as a patient of ALS/MND. I am delighted and thankful to MND Malaysia for appointing me as “Ambassador of MND Malaysia” this October 2020.
2020 has been a tough year for all of us with the unexpected and ongoing COVID-19 pandemic that has made the world feel helpless. Amidst this current pandemic, there are those who are taking steps forward to deal with the challenges and there are those who sit back and whine—blaming their unfortunate circumstances. I realised that living in the present and making full use of my time responsibly enables me to embrace my life meaningfully.
Yes, MND is an insufferable and tortuous disease with no cure. At times, I am saddened and discouraged to witness my body’s ongoing deterioration. We can feel sad but don’t spend too much time dwelling in it. We should give ourselves a chance to step out of the sadness and do what we are able to do. Life is uncertain. It is not to be lived scripted. We cannot predict the future, but we can grasp our present moment and live our lives, am I right?
In the days of counting down our lives, we can choose to happily meet it. We do not have to be a hero; we only need to live our lives with the utmost significance and completeness. I think that ALS/MND patients are tougher than most people. We should be proud of ourselves and love ourselves more. Life is, in fact, imperfect, but this is life! Therefore, live your lives and embrace it!!!
— Tan Shu Hua
大家好，我是陳書樺今年38岁。2014年十二月在马大医院确诊患上渐冻症，已经是第六年了。今年2020年十月，我被选为马来西亚渐冻人协会的渐冻大使，非常感恩，谢谢马来西亚渐冻人协会给予这个机会。
2020年，有一场还未结束的疫情，新型冠状病毒肺炎（Covid-19）。全世界都始料不及，但是在这疫情，有人阳光向上勇往直前，有人怨天尤人，而我在这场疫情中领悟到，把握现在的时光，让生命活的更加精彩！是的，渐冻症是一个痛苦和折磨的症状，无药可治愈，看着自己渐渐走下坡的身体，有时还是会伤心和难受。我们可以伤心，但是不要花太长的时间伤心，给自己一个机会走出来，做自己想做和能做的事情，人生是未知数，它不是一个剧本，我们不能预测未来，但是我们可以把握现在，对吧？
在倒数的人生中我们可以选择快乐的去面对，不需要做英雄，只要把自己的日子过得更加的有意义和充实。我觉得渐冻症的病友比大家多了一份坚强，应该要为自己骄傲和更好的爱自己。人生本来就是不完美，但，这就是人生 ！所以，活在当下，为生命喝彩吧！！！
陳書樺
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