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.

A letter to my unborn child

My dearest

The realization that you will never come to be suddenly sunk in to me today at the workshop with TLC (The Learning Connections – an arts education corporate agency with its main focus on pre-schoolers. I worked part-time at after SOTA, before NLS).

I can only imagine how it would feel like to have the intimacy of having you inside me, sharing my body with me. We could be having telepathic communications and long conversations through the beating of our hearts next to each other. That’s what I hear mothers have with their children inside them.

I am so sorry I cannot make it possible for you to come into existence because of my genes, I’ve always thought I will never want to be a mother anyway so it does not really matter that I would never have kids. I really believed it was no biggie. I had my niece and nephew (and all my friends’ kids) to play with anyway. And the best thing is, they’d all return to their parents eventually and I don’t even have to worry about being responsible for another human being/soul. But I realized it could be my defense mechanism talking. It was probably the best I can muster to cope with this repercussion of the genetic defect.

People tell me how good I am with their children and I wish I could prove to be good with you too.

I just want to let you know that even though you would never be, my thoughts are with you and you are loved, so much that I will never ever allow you to go through what your mommy would have to go through.

⬆⬆⬆⬆⬆⬆

(the above was written in February 2014)

NOW

I’m happy to declare God’s goodness and glorify Him with the most unique life He has blessed me with. While the society in this world sees success as being married and having kids, excelling in a career that allows for the possession of a fast car plus a fancy condominium, I know that that’s not His plan for me.

"A Twist in My Story" – Secondhand Serenade
So you see, this world doesn't matter to me
I'll give up all I had just to breathe
The same air as you till the day that I die
I can't take my eyes off of you (GOD)

And I'm longing, for words to describe how I'm feeling
I'm feeling inspired
My world just flipped, turned upside down
It turns around, say what's that sound
It's my heart beat, it's getting much louder
My heart beat, is stronger than ever
I'm feeling so alive, I'm feeling so alive

Another D in my life

It would seem rather depressing to keep dwelling on my diagnosis and follow up right away with another post on my ataxia so I shall try to keep things on a lighter note first (like a commercial break?). I thought perhaps it’ll be nice to write about the good Ds in my life. But! I realised that actually, many D-words have negative connotations (damage, destroy, defect, disease, deceased, death, destitute, desolation, desperate, demon… I really could go on…) so it was kind of difficult for me to think of anything delightful/delectable.

And perhaps many people would not even consider this D to be positive. Some might even hate it, since it does suffer from a bad reputation and it has been used to describe people who might be overly expressive or easy with displaying their emotions. Or perhaps in awkward and tensed situations where these “emotional” people are involved. The word is DRAMA.

“He’s so drama!”

“There’s so much drama here!”

Nobody really likes drama. 

So, while the general opinion of this word might be a little demoralising or derogatory even, my understanding of it is entirely different. Informed by my academic background plus a personal experience of it during my learning, I’ve another perspective. 

Drama is an art form, a field of specialised knowledge and skill that require specific training/learning for a sound practice. It can also be used as a most effective tool of communication between 2 groups of people – the creators (directors, designers, performers) and its audience. 

I guess I can delve into the theories and philosophies to explain Drama but there’s really no need to bore you!

I just wanted to mention how this D had delightful manifestations in my life:

1. Anderson Theatre Circle (ATC)

When I first started teaching in Anderson Secondary School, I was blessed tremendously with Drama Club as my CCA. It was a blessing because I was provided with many opportunities to develop my craft, from scriptwriting to directing to (sound/light) design etc. Besides planning for drama-centered programs for camps, workshops, public performances and bi-annual competitions (like SYF), we also brought our work overseas to Australia, Adelaide. Other than very motivated and talented students, the team of teachers who were i/c of the CCA were fabulous as well – the sense of pride in what we do was very high because the sense of belonging to the CCA in each of us was very strong. I still remember calling the 3 of us ladies ‘The Dream Team’ and the POWERpuff Girls (because together, we were POWER PACKED). In any case, there was nothing negative at all from my entire 6 years in ATC.

The Dream Team/Powerpuff Girls are the 3 ladies in the centre
(from your left: Sally in black. myself in pink and Nasyitah Tan Wah Ling; also in black)

Performed at the National Library for their Kids Fest

Full dress run of 'Fatal Addictions' - play I wrote in 2007

2. Advanced Postgraduate Diploma in Drama and Drama Education

This. Was a “once in a lifetime, never heard of before” opportunity which gave me 6 months FULLY PAID leave from full time teaching to pursue it. Usually anyone who’s interested in attaining additional qualification will have to do it part-time, i.e. attend classes after a full day of work, complete assignments while fulfilling their duties as a teacher… and it would take 2 years at the very least. So, it was truly a miracle for me when I was permitted to do this in 6 MONTHS.

The 6 months was also a life-changing experience for me, where I remembered that my learning in Drama grew at an exponential rate. It was so refreshing for me to be a sponge where I could absorb everything that was being taught and also be squeezed to produce creative juices in my work. It was an enriching 6 months that I’d never forget.