This ataxia is a box of chocolates (I wish!) and a lemon.

1) “Life is like a box of chocolates, you’d never know what you’re gonna get.” 

And I got SCA! Even though I’ve seen the disease in different forms running in the family, especially my dad, I somehow have this blissful shroud of delusion shielding me from the painful reality that I’d be hit one day. Or perhaps I’ve this misguided faith and thought mistakenly that I’d be protected from this since I’m a Christian. You know, just one of the perks of being a child of God, free from suffering. 

Obviously, that’s not true, Paul already pointed out in his epistle, that 

“the sufferings of this present time are not worth comparing with the glory that is to be revealed to us” (Romans 8:18, ESV). 

And of course, James also said,  

“Count it all joy, my brothers, when you meet trials of various kinds, for you know that the testing of your faith produces steadfastness” (James 1:2, ESV). 

So, I kinda “never knew” I’d get this ataxia even though I’ve must have inherited these ‘bad genes’.

Also, this ataxia is very unpredictable in many ways. Other than the destabilising signs and symptoms which vary in intensity and form with the very many different types of ataxia (more than 40, and the number continues to grow), my prognosis is far from deterministic. The only knowable outcome is short mortality and a future in a wheelchair. 

This also means that the efficacy/effectiveness of any treatments and therapies almost always differ amongst individuals. Nothing about this condition is bound by the laws of causality. So, no one should expect a given outcome from a particular input. 

For example, my consistent input at doing physiotherapy exercises everyday, taking my prescribed medication as instructed, drinking that awful TCM medical powder every night, going for all medical appointments regularly - all these would not necessarily lead to a positive outcome where I won’t degenerate or get worse. There’s actually no way in this limited world where I’d get any better. The best I can hope for would probably only involve prolonging the existing state of this neurological (mal)function.

So, I'd just have to deal with my muscles weakening (hence the unstability) as I take every step at home or outside, my retarded sense of coordination that manifests as I go about my daily tasks and other activities (like putting on my lenses/a bra/or any clothing), the embarrassing episodes of my uncontrollable choking in public, the involuntary spasms I suffer in my restless sleep...

2) “When life gives you lemons, make lemonade”.

Here, ataxia is the lemon. On its own, it is so sour (and bitter) it is quite impossible to taste anything sweet from it. To make lemonade, we’d need water and sugar!

SUGAR

Sugar adds sweetness and for me, all my supportive friends and family are the sugar. I’m blessed beyond measure with the relationships I’ve in my life. It’s rather amazing how God has provided such wonderful people (both teachers and students) everywhere I’ve been placed, be it at Anderson Sec, SOTA, NorthLight, my previous and current church etc. 

Best friends in Anderson Secondary: NASYITAH TAN WAH LING + ANGELINE HENG

Best friend in SOTA - JILL CHEN

Best friend in Northlight School - FAITH DENNING

My friends and family more than make up for not having ‘someone special’. While I live with this sour lemon in my life, I’m so glad I’ve the sweet company of all my lovely friends and family (will dedicate a post to my Mom later).

WATER

Water is another essential ingredient to make lemonade. In fact, it is needed for life. For me, to make lemonade from this sour lemon, I need God. I wouldn’t limit God to being just an element (‘water’) but in so many ways, God is my water, I need Him to live this life. He sustains me when I grow weak, He satisfies me when I am thirsty.