barely breathimg

October 5, 2019

i’m currently taking natural supplements daily to help combat my hay-fever (rhinitis to be technical),  It helps a little but I can feel when the pollen count is high (even when the entire house is closed) or even when it’s only moderate if a window’s left open.  It can manifest itself through itchy eyes, constant sneezing, blocked nostrils, or in really sever cases, an inability to breathe.

i noticed today that i exhibited the first two symptoms – which i noticeably have less of.  However, my wife propped a window open as she was cooking – even once i closed it i knew i was too late and the pollen had already gotten in the house because i couldn’t stop rubbing my eyes.  Later, i had a string of sneezes – which i now rarely do.

it was only once we lived in Adelaide that it became obvious – i lived in Melbourne for a year and was unaware of it then – some say it’s because the wind here blows through deserts.  even when i was in the Philippines and Victoria i sneezed consecutively ( my record is 27. if i recall correctly) so i must have had some form of allergy.

you need to understand that for someone with claustrophobia the prospect of not being able to breathe is a really terrifying proposition.  Moreover, sneezing “wildly” for anyone using a rollator, forget steering but trying to maintain upright balance.

it’s  more prominent now since it’s Spring.  It’s “harder” to do my daily speech exercises now as my nose is blocked. it can be quite challenging to produce the correct sounds while also multiplexing breathing with the mouth – co-ordination is not a strength these days!

Advertisements

learning to un-learn

September 30, 2019

my accent (along with my disability) makes it difficult for me to be understood.  My English was influenced by American (as they “imposed” their educational system on us, unlike the Spanish who “chose” us to be “ignorant”) but someone born Sate-side could easily tell i didn’t grow up in America.

we spoke English at home as my parents spoke different dialects – sadly it was their only common language.  i learned Tagolog (comprising most of Filipino) from the “streets” (as this was only a subject in school during my time – the medium of instruction is in English).  Suffice it to say, my vocabulary in Filipino isn’t “great” or “refined”.

Although i was taught the letter “j” in our alphabet, it is pronounced as “h” in our native tongue – so producing a “hard j” is more difficult for me (and is further compounded by my current speech quality).  During my education, “z’ was not part of our alphabet (i think it’s now included) so this is also not an “easy”  sound for me.  Essentially, my condition impairs my ability to produce “active” (that is, with the voice turned on) sounds.  While previously i made “fast progress” through daily practice and sheer will, i need to be more conscious now as i have a tendency to revert to old habits as my speech patterns are already well established {this is not helped by my age).  Case in point, (unlike consonants) there’s an “acceptable” range for vowels which children “easily” mimic and older people struggle with (that’s why it’s easier for you to learn another language ehen your “younger”).

i’ve got such a “bastardised” accent (as my pronunciation of syllables doesn’t “neatly” fall under one language) that i can pose a challenge to my speech pathologist.  =)

there appears to be a tendency of social media to focus solely on the good – there’a a plethora of “humble” brags and “unrealistic” posts.  i’m obviously not a big fan but i can understand why it’s worth it “following” certain people.  Don’t get me wrong – i’m all for democratisation and giving a voice to the traditionally voiceless but a lot of it is to me vacuous and inane palava (or palaver if you prefer) – not to mention the trolling and glaring divide.  i worked in ICT for a number of years prior to my ABI (Acquired Brain Injury):  technology can be a magnifier for “bad” and  not just a multiplier for “good” – in my experience, it’s a double-edged sword.  i believe posts shouldn’t be policed or censored (free speech and all) but people should be better equipped to discern the “wheat from the chaff” – a form of “natural selection” of sorts (if you will).  It would benefit from balance (like most things in life).

part of this is “processing”.  Some of it is “snobbery” (i’m only human after all).  That said, take from it what you will – i’m not narcissistic enough to discount any “unintended interpretations” of my writing.  My only caveat that it is partly out of need (and partly due to therapy) so it might not be most people’s “cup of tea”.

there’s undeniably some “good” occurrences recently.  Firstly, i’m nearly halfway in completing my online certificate in data science.  This will, “hopefully”, help me get into “gainful” employment again after being “sidelined in the wilderness” for over a decade now.  At times, I used to work a part-time job along with a full-time one – so being homebound was a “drastic” change.

over the last two weeks, i’ve been finishing online crosswords daily. It started with 2.5 hours but now i’m down to a little over 50 minutes usually and my best time is approximately 38 minutes.  i’m merely an amateur cruciverbalist who wants to improve and build up to something challenging like the New York Times Sunday crossword.

i’ve had no falls over the last several months despite my last two  SARA (short for the Scale for the Assessment  and Rating of Ataxia) tests showing slight deterioration.    i think this is mainly due to my neuro PTs’ advised interventions added to (or slightly modifying ) my daily exercise routine.  Sure the NDIS (Australian National Disability Insurance Scheme in case you’re not aware) is a source of much consternation and a bugbear to negotiate (even for mundane tasks) but thanks to it i can now afford to go weekly instead of monthly (which used to be the case).  I had several near-misses lately:  the point is I didn’t fall down where a couple of months ago i surely would have.  As in everything there is both good and bad – i’ve heard it referred as a major reform since MediCare:  there are obvious, signficant “teething problems” with its initial rollout but you can’t really fault the intention (it is the implementation where it falls down – pun intended ).

sadly, i’ve been binge watching a lot lately. Whether to “empty out” the numerous recordings on my DVR (Digital Video Recorder) or streaming over the Internet – i’m such a cheapskate that I only use free services (thankfully, Australia is quite “progressive”).  My  current darling is  “You’re the Worst” on SBS (Special Broadcasting Service) On Demand – the “Resume” function makes the bugs bearable.  I watched all episodes of the four seasons available on the web. I find the writing witty and funny (admittedly, i’ve got a “dark” sense of humour i liked the tv show Legit , i found the movie Pulp Fiction hilarious, and mostly laughed throughout the stage show, The Book of Mormon ). I enjoyed Seasons  1-3 ; S4 was ok (my “disappointment” with the new intro notwithstanding) and still will watch the last season (i’m curious how they will wind it down and then end it). i think Ricky Gervais was right to cap the UK  version of The Office after two series.  i use TV to distract from the thinking i do during the day – so “smart” and “subconscious” programming is much appreciated.  The last show made me think of the novel, The Unbearable Lightness of Being although watching is supposed to relax me.  i sometimes read (with the aid of a magnifier) during ad breaks (i know this is counter to my intent but i can’t really help doing it).  i find it helps me think more broadly about things and i’m not limited to seeing things only in a certain way.

My Ph.D. has stalled and as of late i rarely write anything – and when i do i only mange a few words.  Maybe i’ve just “hit the wall” and i’m just tired given the number of years (when a lot of things usually pique my interest) and the effort to type compounded by my waning interest.  Maybe it’s not up to scratch given my exacting standards and past performances.  Maybe it’s my growing frustration with the admin required and my over reliance on altruism upon learning the hard way that it’s self-interest that often yields results.  Maybe it’s my substantially increased anxiety due to my health concerns or fast approaching conclusion of my candidature.  i suspect all of these factors play a role.  Thankfully i’ve got a supervisor who believes in me and my abilities – she’s doing what she can to make that path is still available to me.

i was told that walking outside would do some good – not only would it further develop my legs given a functional task but it would also expose me to fresh air and vitamin D.  I’m trying to incorporate this into my routine but admittedly i’m hesitant given my bouts with hay fever and uneven terrain and inclines.  On days when the pollen count is not too high, I go outside the front of our house to gradually acclimatise me to the irritants and eventually build enough strength to confidently tackle going around the block.

My speech difficulties have taught me to listen more to others.  My walking challenges have resulted in me losing weight (as the heavier i am, the harder it is to remain ambulant), made me appreciate more the challenge of getting robots to balance on two legs.  My greatly reduced typing speed has caused me to concentrate more on quality rather than quantity. As has happened in the past with other persons with disabilities, it has ‘forced’ me to adapt and strategise to perform common tasks.

It is easy for me to continue being negative: seeing silver linings does not come natural.  These are the cards i have been dealt and need to make the most out of them.  Admittedly, it still pisses me off when people whinge about what i consider to be “terminally trivial” things but i have to learn to focus instead on the things i need to do and how i can perform them better.  While the Chinese symbol for ‘crisis’ has been disproven to mean both ‘danger’ and ‘opportunity’ simultaneously, it is still useful to see both the  yin and  yang of things.

almost famous

November 13, 2017

the other night I saw the 2015 dramatic film: “The End of the Tour” on SBS.  I wasn’t sure I was going to like it – it was essentially a conversation and given it’s difficult as medium skews heavily toward being visual- but I really enjoyed it.  It was an interview over several days by David Lipsky representing Rolling Stone magazine about the critically-acclaimed author David Foster Wallace (I must confess whose name I hadn’t heard before).

I found that actors cast, Jason Segel (for Wallace) and Jesse Eisenberg (for Lipsky) were well-thought choices.  They were both “smart” enough that neither performance seemed “wooden” (suffice it to say it wasn’t an enormous stretch to suspend disbelief).   This can be “tricky” given it was a mainly dialogue-driven plot.

Aside from the words, I think what drew me in was the shared “addiction” of watching too much television.  Moreover, I can relate to wanting a job where not too much thinking is required (as a respite of sorts) – it reminded me of a friend that once said that a “mindless” task was a welcome break for her from her usual job.  Furthermore, I liked that within it was featured an action movie that didn’t require a whole lot of mental horsepower to enjoy (to what I viewed as juxtaposition when the characters watched a black-and-white film on tv).

I found the scene meaningful when the proponents couldn’t find where they parked their rental car in the airport.  This just illustrates how there are different kinds of smarts and how book-smarts is not always preferable in accomplishing certain everyday tasks.  As the adage goes:  Common Sense is not that common.  This is a moment of levity that cuts the seriousness of an otherwise dry account.

I enjoyed the line:  “Nice but not real.” How some situations are artificial – one doesn’t have to look far for the often fabricated constructs of reality tv.  Don’t get me wrong; I’m not hating on the entire genre but, like all “entertainment”, some shows are more “watchable” given the individual’s purpose.

I’m now curios about Wallace’s opus of a novel:  Infinite Jest and Lipsky’s best-selling memoir: Although Of Course You End Up Becoming Yourself. Hopefully, I’ll eventually have time to read them.

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

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).