as time goes by

April 12, 2017

last night a friend (who was also a student at UniMelb and now based in Sydney) had dinner at our house.  It’s been years since we last saw her.  Maybe it was the shared experience but it was a confluence of factors (including our “academic” tendencies and that we didn’t share accommodation).  I’ve got few friends because of my numerous quirks but when you meet someone, you just know if you’ll get along with them.  I’m not that nostalgic but it was good to catch up on “old” times

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waiting to exhale

January 5, 2017

Saw Birdman a few nights ago on free-to-air tv and it made me think.  Is this blog a feeble attempt at relevance?  I don’t really use FB (because like internet browsing it can lead you down a time-consuming rabbit hole) or tweet (because I have verbal diarrheoa).  Although it’s very hard for me to type, writing does help with my sanity.

I am used to working two jobs (usually one full-time and another as a casual) and now I have none.  Many say I’m “Iucky” because I can’t help around the house anymore and have a valid “excuse”, am I really that “fortunate” to lose my balance and co-ordination? Do they even stop to think maybe I don’t want to be on the lounge and watch all day.  Forget walking, what I would have given for my speech to be left intelligible (now it’s only my wife that mostly understands me) so I could have tried to hang on to my last job for longer.

I wouldn’t mind wearing glasses but instead I need a handheld magnifier to read “small” fonts because I’m legally blind (although I can still see).  It’s getting around with a walker that most concerns me about losing my eyesight.  I wish I could adjust the size and contrast of subtitles to suit my preferences.

There’s still a lot I want to see but most sites are pretty much inaccessible.  That’s perhaps why my interest in food is more pronounced.  I can’t even drink a hot beverage on my own (and I really love coffee).    Sure, I no longer cook nor bake (I was rather fond and quite “good” at both) but I can still enjoy eating – although I now refrain from bones and soup (as they are “tricky” for me).  I’ve given up alcohol since I use a straw to drink (since I don’t want to be easily intoxicated with all the air I ingest and drinking wine is just stupid).  Although, I suspect, I would’ve been naturally weaned off the stuff as my wife’s allergic and I’ve got a son who’s still too young to drink. Moreover, I’m not really a fan of waiting for my food to cool down; or expecting for a straw or a bowl (because I need them to feed myself independently) to come as those around me begin eating.

It’s the ordinary things I find troublesome like stairs, buttons, inclines and writing implements.  It takes me longer to dress, brush my teeth manually (automated brushes often have small bristle “footprints” and I can’t floss), cut my finger nails (I can no longer groom my own toe nails) and use an electric shaver. The only reason I can go to the toilet and bathe myself is because of the equipment (a raiser and a shower chair & bars respectively).  Aside from not being comfortable, I find the concept of adult diapers disgusting.  Also, I’ve got to pee more often as I can no longer hold my bladder.  Don’t get me started on how toilet doors open and the cramped spaces – poor design often results from a lack of empathy or thought.

I know it shouldn’t bother me but I used to be a “fast” walker for my height. Now because I walk very slowly and carefully, I lag very much behind my family.  Maybe it’s a thing I got so used to. I can no longer play basketball which was my main form of recreation and exercise (and stress relief).

I hate it when I’m told to think of others who struggle more than me.  It makes me even “sadder” for them and not grateful that my condition could be worse (and don’t feel “better” at all).

I don’t usually whinge but I’ve been told in order to truly move on I need to vent on occasion – so pardon the collection of complaints, I’ll try to avoid such posts.

patience (is a virtue)

November 29, 2016

we are born with two ears and one mouth – having difficulties speaking has led me to listen more (but that deserves another entry of its own).  Common practice dictates that you should hold off for 24 hours on sending an emotionally (or alcoholic) induced e-mail, text or tweet (much like counting down from 10 or taking long, deep breaths can aid in dissipating excess emotion). If you still think it’s appropriate later on then go for it – I guess making it difficult to type has its perks and writing a post over a few days helps me to reflect and reevaluate more.  Despite my Vulcan-like demeanor, I exhibit more human behavior now. If I still really feel strongly about something, I can blog about it.  That said, my words need to be tempered by the saying: “it’s easier to condemn than to convince.”  Sure, sometimes it’s hubris but at times it’s simply therapy, expression or observation.  This is not a “manifesto” to abstain from commentary, it’s just one should be able to distinguish what one’s true purpose is.  Having a combination of these factors is not necessarily a bad thing:  it’s being conscious of what’s subjective versus objectivity that’s important.  Intentions (and motivations) need to be transparent.

A “wise” editor once told me that everything is political and that being apolitical is a political choice.  I’ve since embraced this tenet – after all, our thinking is not only a function of our genes but also of our experiences.  Sometimes it can look like I’m fence-sitting when I just don’t have enough facts or am considering the nuances – the devil is in the details after all.  The question I ask is how, if at all, does this affect me or my family?  Sure, I’ve got opinions about many things but does it really matter in the grand scheme of thing or is the motivation so that I feel better.

I used to think that it was “simply” a matter of quality over quantity.  But to paraphrase the Pulitzer-prize author, Jennifer Egan, one needs to write regularly, even badly at times, to be able to ultimately write well.  In this vein, I pour my writing into one document – not everything makes it to be published under my blog; not everything is meant to be shared with the rest of the world (some are best left as “inner” dialogue – look at the trouble Homer’s gotten into throughout the years).   That said, perfect can be the enemy of good so it can also be helpful to get something out there and not “oversanitise” or self-censor everything.  From experience, some comments can be constructively critical and useful for refining your thoughts and others you need to consider with a grain of salt (public spaces can be a great boon but also a huge bane at the same time – wisdom of the crowd vs. trolls and haters).

i’m still here

November 22, 2016

it is like a balancing act (walking on a tightrope as it were) between acceptance and “raging against the dying of the light” – I think the latter is too negative and implies merely fighting (which is not always the most appropriate metaphor).  I do not claim to get the mix always right but at least I’m more conscious of it. I try hard and exert enormous effort despite not always succeeding: it is partly a function of my inherent stubbornness and my will to be better.

The reality is people with ataxia mostly do not improve: the point of physical therapy is to stave off or delay degradation. Aside from my daily exercises, I will endeavor to do the home program that my neurophysio gave me more regularly because it is supposed to be highly beneficial for my condition.  My appointment with my neurologist and the report from my physio prompted me to reflect (not to mention the PT students going on holiday).

Not having a “name” for my condition is a double-edged sword: not knowing does not “box” me in a fixed category on one hand; on the other, I struggled at first because I wanted to learn as much as I could so that I could take appropriate actions to delay (or better yet eliminate) it.  Not to be too fatalistic but all people are dying since their birth:  some are just more accelerated than the “average”.

walk this way

November 10, 2013

i had trouble walking in Marion today – I was a bit unsteady.  I’m not sure if my physio is paying dividend and I’m unconsciously trying to break my old and bad habits.  In any case, I should be vigilant as to the underlying cause.

dance fever

August 9, 2013

i’m not a big dancer – never was.  I don’t know if that proclivity stems from the fact I’m no good at it or I just don’t want the attention.  I might watch SYTYCD if it’s on and nothing else strikes my fancy but I won’t actively seek it out.

The visual effects originally intended for dancers can be “retrofitted” to augment traditional therapies (I think). The use of cameras and integrated images can be used for revisitable feedback that can help map causality. Reconstitution or alternative views can assist with a “faltering” self-image.  It also presents opportunities for expression and collaboration – alternative forms of “art”.

Like all “new” technologies it’s relatively expensive and not quite ready for primetime but hopefully Moore’s law and accelerated adoption will kick in.

reminiscin’

August 5, 2013

what did Prost say about remembrance, that it is not always in actuality of how things were. A cognitive psychologist once explained to me that memory is a process of reconstruction and not retrieval.  There’s nothing wrong with nostalgia per se; as long as you’re aware of it and don’t “overromanticise” that would be fine. Some are unable to reflect on and process the significance of events – what does it mean to you and how does it affect others .I seem to recall something Socrates said about the unexamined life. I’m at the age where I tend to dissect thoughts and actions. I don’t pretend to get it right all the time – that’s why I need to be more conscious.