Never regret living  

By Nisshaa / 15 February 2023


living with dystoniaMy family and I

  • A true story about a girl who never thought to be a writer
  • How she was determined to excel in her life although afflicted with mystery illness
  • What are the values she learned in her life?

“I shouldn’t even exist…”

“I’m just a burden to everyone around me…”

“Should I just…”

These thoughts haunted me as I saw my mom struggling to take me out of a wheelchair and place me on the bed. I never asked for this. None of this. The shock of my diagnosis was still fresh in my mind. I get nightmares just thinking about the future. Would anyone accept me for who I am? For what the future holds for me? To make matters worse, I’m in the midst of my degree. Could I even complete it now that I know the mysteries of my body? I didn’t mean to start this off negatively, but here’s the thing, things weren’t like this before…

1/ My exciting childhood


dystonia Pokok.AsiaMy left arm started to shake involuntarily when I was six

I remember the healthy good life of my childhood. I was a playful, jovial and fun-loving kid. I was set to grow up to be a normal functioning person in this society, but no one expected the time bomb that was ticking in me. When I was six, my left hand would suddenly start moving involuntarily. At that time, doctors couldn’t diagnose what was wrong with me, so I brushed it off as it only occasionally does that. My elementary school life was also just as good. 

2/ My high school disaster

And then high school happened. It was at that point I started noticing the differences between my peers and me. And apparently, they noticed it too. Some began to avoid me due to involuntary movements, and some even began bullying me, both mentally and physically. The self-confidence that I had for the past 12 years of my life vanished, and my slow learning began to become a hindrance. 

dystonia Pokok.AsiaMy highschool club 

Despite all that, I worked hard. I wish to just leave this high school life behind and move on to college. And for that, I needed to score well in my SPM. But things got worse during my final year at high school. It was then my doctor diagnosed me with a rare condition called Dystonia. 

Dystonia is a disease that causes involuntary movements or spasms of muscles in the body due to overstimulation of neurons in the brain. In layman’s terms, it’s a disease that causes parts of my body to have random spasms. It’s not curable, and it only gets worse over time. As the doctor was laying down all this information on me, my disbelief only grew.

My emotions were in disarray. This never should have happened. The fact that I was living with an incurable disease throughout my life made me hate life even more. Blames were being thrown towards my fate, the gods and everything else as I pondered about my future.

“Is life worth living anymore?”

“Should I end it now and get it done with?”

Despite that, I persevered. I chose to ignore the fact that I have such a disease with me, and I’ve decided to hide it from everyone else too, hoping they wouldn’t notice. With a newfound determination, I finished my SPM with a pleasant result.

3/ Amazing university life

dystonia Pokok.AsiaMy university friends when I was doing my degree in Teaching English as Second Language (TESL)

The start of a new era. Goodbye, high school. Hello, University! With the new stage in life, I was hoping for a fresh start. What I got is that, and more. I found new friends who see me for who I am instead of the condition I have. I’ve noticed my social skills were improving as time passed on. Even my slow learning didn’t seem like a hindrance. 

I began loving education once more. I’ve gotten into my first relationship, and all that was before I hit 20. I started to feel loved again. Love was around me, and I feel appreciated. Life didn’t seem so bad at this point. 

Although, it wasn’t all smooth sailing. My dystonia got worse, and it now began affecting my neck. It’s tiring to keep my muscles in check, and the random spasms caused aches all over my body. The medication helped suppress the symptoms a little, but not by much. Surgery was an option, but due to the unnecessary complications, we decided not to go through with it. I began getting stares from strangers due to the way I move around, and it does hurt my self-confidence a little. But with my loving friends and family sticking with me through all this, I felt better. I felt alive. 

4/ Again. The downfall

dystonia Pokok.AsiaI was wheelchair-bound when I was 22

21 years of age. It started going downhill once again. Stress, heartbreak and anxiety have finally caught up to me and caused my health to deteriorate even further. I was forced to be wheelchair-bound due to the uncontrollable spasms all over the top half of my body. I watch my mom clean after me, carrying her helpless daughter around without fussing at all. I felt like a burden to everyone once again. This disease isn’t covered by insurance, so my parents had to work extra hard to pay for my medical expenses. I felt like a burden. I started blaming my fate and the gods once again. 

“Should I just….end it all?”

5/ The breakthrough

No. I refuse to end it like this. My parents work hard to give me a normal life, and I’m not going to squander it away. God gave me this for a reason, and I’ll take it. I began my physiotherapy sessions and began walking again. My spasms were still sporadic, but as I learned about myself more, I began to understand this condition I have. I started feeling better. But the thoughts still struck me from time to time. I needed to let this out. I needed an outlet to pour my emotions. That’s where I looked into writing. I wanted to write about my condition, how it’s like to live with dystonia and not be ashamed of it anymore. And so I did it. I opened an Instagram page and wrote my first caption.


dystonia Pokok.AsiaMy first caption on instagram

And it went viral. People started reaching out to me to tell me what an inspiration I am, to give me words of encouragement and to motivate me to push further. I was overwhelmed by all the positivity the community gave me, inspiring me to head down this path.  The more posts I made about myself and dystonia, the more I inspired people, which in turn inspires me to push further. I’ve gotten interviews from local news networks. My articles were published on multiple sites, and I’ve decided to continue my education with a master’s degree in the English language.

6/ Living a best life while I am alive

dystonia Pokok.Asia2022 I graduated with a master’s degree

It’s been 6 years since that fateful day. The day I decided not to give in to my disease and go against all odds to grow my career. Me, a person once deemed as a slow learner, someone who couldn’t construct sentences well, am now a writer for multiple sites, a master’s degree holder, and currently working as a copywriter. Writing was never my strong suit, so if I were to travel back in the past and tell myself what I would be in 7-8 years time, my past self would be in shock. 

God gave me this condition, and I’m embracing it and living life to the fullest. I am glad I have those illnesses with me. Without them, I would have never discovered the importance of appreciation, self-love, friendship, and other great values. Although acceptance takes time, once it does, nothing can ever stop you from pursuing your objectives or successes. Being with a disabled body is OK. You are perfect the way you are. There’s no need to rush anything. Just accept yourself as you are at this moment. There will be happiness inside.

It’s never impossible to reach for the stars as long you have the grit and the support from everyone around you. As for what the future holds, I can’t say for sure. Doctors say this disease will worsen as I get older, so my life expectancy isn’t much. But there’s a reason why God gave me this disease; cause I have the strength to get through this and show everyone I could make it too. And I’ll make sure to leave a legacy behind. A legacy… of me.

Looking for more related article? Check them out here:

Good Home, Good Relationship And Vice Versa

Share this on:

You may also like: