Sunday, October 30, 2016

Brian Jean can shove his tunnel vision of 'out-of-touch elites' where the sun don't shine

Updated: 20 Nov. 2016 
Sometimes I read something that's so ludicrous I decide to blog about it. The latest example follows. 

During his speech to the WRP's annual general meeting in Red Deer, the Edmonton Journal's Graham Thomson wrote:
'He [Jean] didn’t talk about building a wall but there was plenty of talk about “corruption,” “out-of-touch elites” and “disastrous” government policies. And he painted a picture of Alberta as bleak as that of Trump’s United States.'
Jean is also quoted as saying
'We see crime skyrocketing and poverty increasing. We see a growing number of young people being trafficked into a sex trade against their will. We see dangerous drugs like fentanyl and other opioids killing Albertans and ripping families apart. This must stop. And we continue to see the rights of criminals put above the rights of victims.'
All presumably because of Rachel Notley's NDP 18-month government. What utter nonsense. Who could buy such tripe? Apparently many WRP supporters, as Jean was feeding 'red meat' to his base.

ELITES
This blog focuses mainly on the “out-of-touch elites” bit. I'm not sure what Jean means by 'elites' but one OED definition of 'elite' follows.
ELITES AS EDUCATED AND SKILLED:
A select group that is superior in terms of ability or qualities to the rest of a group or society.‘the elite of Britain's armed forces’[as modifier] ‘an elite athlete’‘an elite commando unit’
Let's examine the definition that elites are people who are superior in terms of ability or qualities,e.g., elite athletes. Over 39 years of residing in Alberta, I have heard people who vote right-wing provincially or federally (Progressive Conservative, old Reform Party, Harper Conservatives, etc.) speak of those who work at the University of Alberta (UA) as 'out-of-touch with the real world', more or less elite 'ivory tower' know-nothings.
A state of privileged seclusion or separation from the facts and practicalities of the real world.‘the ivory tower of academia’
In other words, many right-wing Albertans, evidenced by Jean's 'firing up the base' rhetoric, view having an education as making you both elite and dumb. And Jean encourages it. Even worse, being educated and working at a healthcare facility or a university, teaching at any level, i.e., working in any public sector, is akin to living in some sort of fantasy world. You're apparently out-of-touch, unlike a dude or dudette who works in any private sector job. Hmmm...

First, this viewpoint pisses me off (sorry, but 'urinates me off' doesn't cut it). Yes, I take Jean's slander, directed at the NDP government, personally. Why? 
  • Well, when you diss MLAs who achieved an education and have a background of working in public sector jobs, you diss us all.
  • Yes, I have a professional qualification from a national health profession organization (CSMLSand two university degrees. Plus I worked full-time in the public sector for Canada's blood supplier, and in Med Lab Sci at UA for ~22 years. 
  • And, surprise! I've never considered myself to be out-of-touch with the real world or an elite, pampered ivory tower know-nothing. 
  • Nor are the MLAs in the NDP caucus.
  • When you go down the road of turning folks against each other, you foster division and hate. It's we versus 'the other' territory. And that's what WRP's Brian Jean is spawning.
Let me expand on this theme by a closer look at my experience. Discussing the particular is always more effective than speaking in generalities. I'd bet my background is similar to those of most folks who Jean sees as out-of-touch elites - those of us with backgrounds in education and public service such as working in healthcare. Really, his out-of-touch elite slander is laughable. 

For 22 years at UA I taught culturally diverse students from all walks of life and backgrounds. The field was one where making a mistake had serious consequences, e.g., errors in the hospital transfusion service laboratory (TS) could result in patient harm, including death. Indeed, I once had a student whose error while interning in the TS and being supervised by an excellent medical laboratory technologist hastened the death of an elderly patient (Severe hemolytic transfusion reaction involving a student). 

As both a clinical instructor for the UAH transfusion service and a prof, I got to see students up close and personal in good times and bad, watch them grow and mature, and was privileged to be a part of their life for 3+ years, including discussing and counselling them on many issues. Face-to-face talks to discuss marks, explain and encourage how to improve, often involved tear-filled sessions. 

In some cases students were devastated by low or failing grades because parents in foreign lands had saved and sacrificed to fund their Canadian education. To fail would be disastrous, the end of their world. Worrying that they might do something drastic was a real concern. 
  • I suspect this is different from business folks firing employees because what's key in business is the bottom line (profits). In education and similar public sector professions, humans and their well being are key. Yet Jean & his Wildrose cronies ridicule the work we do as out-of-touch elites.
For one course, I was with 4 students all day long for weeks. Having 8 eyes on your every move for hours, week after week, asking 'Why?' is stressful. There was no place to hide, no calming space to feel tired or 'down'. You had to be 'on' 100% of the time. Every minute of every day was 'Showtime!' where you had to come prepared to give your best. 
  • This is not a lot different from servers in restaurants or clerks in stores.  I respect their work. Wish Jean & his Wildrose cronies did mine. 
A typical workday averaged maybe 12 hours, sometimes longer. Reading journals on the weekend was the norm. Keeping up-to-date with both theory and practice were critical to maintaining respect. On holidays time was often spent thinking of improved ways to enhance student learning and love of the subject. Many relatives worked long, hard, exhausting hours for low wages, including my Mom and others. 
  • I respect their work. Wish Jean & his Wildrose cronies did mine. 
Honestly, my healthcare career working for Canada's blood supplier and my university teaching career were the most fun I ever had  - and  the most rewarding - but were they an elite, pampered, out-of-touch existence? If they were, I paid for them with long years of study and dedication and discovered that sacrificing leisure hours to lifelong learning never ends.

I'll skip the rest of the sidebar about what it's like to work in the public sector, whether a medical laboratory technologist, nurse, physician, social worker, teacher, professor, clinical instructor, etc. In all cases, such work is not a pampered out-of-touch life. Trust me, it ain't. 

If I'd run a business, according to Brian Jean I wouldn't be elite and out-of-touch, eh? Well, I have run one for 16 years now, including hiring others for specific projects. There's no difference, I'm the same person. I haven't suddenly become in-touch and down-to-earth. 

Also, people don't emerge from a vacuum when they enter a profession or gain employment. My grandparents on both sides were dirt-poor farmers. I was raised by maternal grandparents for my first 5 years and later spent many summers at their Fisher Branch MB farm. Driving the John Deere tractor, fetching water from the well, helping Gran wash clothes using a tub with attached clothes ringer, and riding on a stone boat loaded with manure are treasured memories.
My Grandmother and Mom, Fisher Branch MB

My Mom and her brother with their one gift, Christmas ~1926
My Dad (grade11) worked as a gold miner, aircraft mechanic, aircraft inspector. Mom (grade 8) worked as a presser in a dry cleaners, waitress in a diner, and slung beer at a veterans' club. Other close relatives have included postal carrier, garage owner, insurance sales rep, long haul trucker, nurse, office clerk, landscaper, miner, Mountie, manual labourer in the oil patch.
Me ~1949 where we lived in bush, middle of nowhere, at Laverty ~1.5 km outside Red Lake ON
Moreover, professionals are invariably curious about life and often travel widely. Attending conferences and collaborative work exposes people to colleagues from many countries. Having significant knowledge of people working in diverse jobs in different cultures is the norm. 
  • Your life and world view expand, they don't contract as Brian Jean would have his gullible fans believe.
ALBERTA'S NDP GOVERNMENT
Back to Brian Jean. Why would he slander NDP government MLAs as “out-of-touch elites”? Your guess is a good as mine but I suspect he's pandering to those with less education who've learned much in the 'school of hard knocks' and work in the private sector.  

Folks who tend to see the educated as living a pampered life, specifically those working in the public sector (e.g., diagnostic imaging technologists, med lab technologists, nurses, social workers, teachers, etc.). 

I'll pick a few NDP MLAs and you assess if they are out-of-touch with Alberta's reality, the elites that Brian Jean disdains. Not included are the 'kids' who won in 2015 because Albertans had finally had it with the 44-year PC government.
I wonder if Brian Jean prefers a legislature populated with less educated MLAs. That would be weird because many in his WRP caucus hold university degrees. 

Or are you only 'out-of-touch elites' if you're NDP? Or is it NDP with degrees in helping professions who are Jean's scorned upon elites? 

Or maybe you're elite only if you hold liberal and progressive views? Apparently conservatives, even those in power for 44 years, are not elites. Even though they ran everything and had all kinds of Albertans AND Alberta institutions kissing their well greased tushes
Perhaps Jean more highly values MLAs with experience as business men, entrepreneurs, farmers, who are really small business men and women, anyone working in the private sector? If so, does he see them as being in-touch and not elite?

Of course, governments have many experts in the civil service and may also obtain outside advice. Two NDP examples: 
BOTTOM LINE 
Legislatures need folks from all walks of life. They need to represent the folks they govern. However, the larger issue is that you don't run government like a for-profit business where the bottom line is being in the black. 

Business types are NOT MORE desirable MLAs than those in helping professions. Their life experience is not broader than others who Jean demeans, indeed it may even be more limited for some, perhaps many.

The rest of us with job experience caring for people from every walk of life, in every area of life, are out-of-touch elites? No. That's WRP Brian Jean pandering to his base.

It's great if you can balance budgets, as when oil prices are high, but government first and foremost exists to serve all the people, especially the most vulnerable in society who need a helping hand. When you raise them up, you raise everyone up. 

Governments set priorities according to their principles and belief systems. Like the PCs, Jean believes that business types know reality best and will implement the discredited ideology of 'trickle down economics'.

Moreover, Jean seems a proponent of 'raise yourself up by your bootstraps' dogma. 'If I did it, then all you other folks should be able to do it too.' Therefore, minimal government is best government. 

Jean would not know or care that many of the NDP MLAs he carelessly disses for political advantage, preying on the ignorance of the WRP's base, are both formally and informally educated with broad experience. 

Jean spews nonsense such as: “Since the NDP has taken power, our unemployment rate has nearly doubled. They’ve waged a war on business, taxed companies out of existence and sent jobs out of province and out of country.” 

Who can spout such BS to followers? Surely only a politician who thinks his followers are ignorant and can be easily manipulated.

LEARNING POINTS
Alberta's right-wing in the form of the PCs controlled our government for decades. They were the elites who ruled Alberta for 44 years. Conservative elites. To Jean, it seems only progressives are elites.

What to say to his drivel on the NDP. One is that Brian Jean sure as hell won't 'make Alberta great again' whatever that means. To Jean it probably means channeling King Ralph by making cuts to health and education and other people-focused programs so that the government can run a balanced budget. 

If oil prices rise, and they will eventually, whichever party is in power will try to take credit. 

Jean's world view is a negative one. It's funny that he calls the governing NDP 'out-of-touch' elites (meaning with knowledge beyond bean-counter business?). Clearly, Jean and his WRP are out-of-touch with global events and new realities. 

Jean and the WRP don't realize that 
  • Alberta's economy needs to gradually transition from fossil fuels to sustainable energy or we'll forever be captive to Saudi/OPEC manipulation and it should have happened decades ago. And yes, we need to help those trapped in dead-end jobs in the coal industry. 
  • Alberta must fight climate change with real measures or forever be seen as a pariah that ignored, even denied, global warming.
  • Most of all, that change (not only maths) is hard. A get-out-of-jail-free card doesn't exist. Citizens will need to pay more to combat climate change, develop renewable energy sources, upgrade infrastructure, improve education, spend more on healthcare, especially assisted living for seniors, and much more after decades of PC neglect. 
Albertans who whine about what change will do to them need to suck it up. Whatever happened to the pull-yourself-up-by-the-bootstraps rugged individuals that Alberta prides itself on? 

Instead of proposing detailed constructive alternatives, Jean pontificates to the gullible that the NDP represents corruption, out-of-touch elites and disastrous policies. He's challenging Trump for what Bill Maher calls being a 'whiny little bitch'. Yes, it's harsh and I don't like the 'bitch' part, but it fits.

Well, Brian Jean can shove his tunnel vision of Alberta's realities where the sun don't shine. I hope a man with such a negative, alternative universe, Trumpian view of the world will never form a government in Alberta.  I hope there's too many 'out-of-touch elites', in urban and rural centres, anywhere in Alberta, to prevent that disaster.

As always comments are most welcome.

Saturday, September 17, 2016

Why newspapers matter (Musings on digital age killing print journalism)

Updated: 18 Sept. 2016
This blog derives from attending Paula Simons' talk at EPL's Forward Thinking Series. 

REVISED VERSION
Since it was published, as always, I've revised the blog significantly. Main reason is the first version is a stream-of-consciousness draft that nearly always needs major work to capture thoughts fully and present them in an interesting way. Translation: First iteration often sucks and begs to be improved, putting readers out of their misery.
As an instructor and prof teaching transfusion science in Med Lab Science, to my surprise I was often asked to speak at conferences. Partly it was half-believing Bernard Shaw's maxim, “He who can, does. He who cannot, teaches.” But that underestimates teaching, because it sure as hell ain't easy.
My suspicion is that I was asked to speak mainly because of presenting the real-me, even if politically incorrect and risking criticism, something that Alyson Connolly and others see as critically important in public speaking. 
That's what The Edmonton Journal's Paula Simons did in her EPL talk. She was unafraid to be authentic and reveal her genuine thoughts on many topics, even if possibly seen as politically incorrect by some. As well, Paula demonstrated a classic way to give an entertaining, successful talk. Her presentation style caught my attention from the get-go, because it's a skill I team-taught in Med Lab Science.
So what follows is what I really think about the digital age and print journalism. And how the digital revolution undermines democracy, especially as it affects the young, pretty much the opposite of what everyone claims.
My views are not balanced and fair, but they are genuine. Revisions are shown in [brackets].
The motivation for the blog specifically comes from meeting a young woman at Paula's talk who told me she was tired of superficial news from social media like Facebook and was glad her Mom encouraged her to attend Paula's talk because she learned a lot. She also noted that she was concerned that she was being stalked on Facebook with ads targetted to her interests.

[Oh yah! Not only Facebook. Google is the main culprit and tracks everything you do, unless you turn it off. And there's so much more about the digital age that invades our privacy. My take is that most young folks could care less if their privacy is invaded, if they see ads based on their interests, that's AWESOME! They don't care what Apple, Facebook, Google does.See FURTHER READING.]

BACKGROUND
In my 7th decade, I have subscribed to a newspaper for as long as I've lived independently from parents, obviously many decades. Residing in an Edmonton university-area apartment complex whose residents are mostly University of Alberta students, it's hard not to notice that I'm the only one on my floor who takes a newspaper, in my case the Edmonton Journal. Suspect it's the same on all 28 floors.

Headlines such as, 'Internet growing as Canadians' main source of news' concern me, especially if news is mainly via social media like Facebook and Twitter.

Detesting Facebook for many reasons, I prefer Twitter.

But the fact is we tend to 'friend' and follow folks who think just like us, meaning we on social media seldom see alternative viewpoints. As an oldster I have the breadth of experience to realize others think differently. But those younger likely do not. 


[Indeed, judging by my fellow tenants (mainly University of Alberta students), most don't have a clue about issues important in Edmonton or even Canada and definitely receive no in-depth analysis. 

How could they? Few listen to local local radio stations like CBC's Edmonton AM, watch cable news at 5 or 6 pm or national newscasts later in the night. Few subscribe to cable TV or have a land-line phone. 

They don't subscribe to or read Postmedia's monopoly troika, the Edmonton Journal, Edmonton Sun, National Post. The Globe and Mail, are you kidding? They don't even read the free local daily Metro News judging by the stack of freebies left in the front lobby.

So where do they get the news that makes for an informed citizenry. They don't. Dare I say they don't vote in significant numbers either, despite major efforts to motivate them and make it easy.]

PROPOSAL
I'd love to see the University of Alberta's Faculty of Extension  offer a course correlated to what Paula Simons gave a masterclass in at EPL's Forward Thinking Series. 


Perhaps call it, "Why local newspapers matter" or similar. Maybe even expand it to being a compulsory course in many faculties.

[Upon reflection, this title doesn't cut it. It's way too boring. As a transfusion instructor the one word that woke students up immediately, like no other, was SEX. And the target audience for such a course is not folks like me, it's young people from late teens to early thirties,who have abandoned newspapers, think they don't matter.

In Paula's EPL talk, she joked that when we read her column, we have 'intellectual intercourse' and we were all fabulous. So how about these suggested course titles:
  • Newspapers: Best intellectual sex you'll ever have;
  • Best intellectual sex you'll ever have is this media course;
  • Be adventurous: Give intellectual sex a try.]
Main topics would include (no particular order):
  • [Great intellectual sex you're missing without newspapers]
  • Why, if newspapers did not exist, you'd be clueless, dumb and dumber. Reporters would not exist to tell your stories, those of your city, local entertainment, sports team, nada.]
  • Newspapers before the Internet (Sources of income, reporting standards such as requiring 2 sources of information before printing. [Does it sound quaint? Don't be ignorant. Watch All the President's Men.]
  • Newspapers in the Digital Age (Loss of advertising revenue, Internet users want everything to be free. [Who do you think will work for free? Would you?]
  • Rise of democratic 'citizen journalism' (Anyone can blog, become a source of information for tens of 1000s with zero accountability. [Some citizen journalists are quality, many are not. You're their poodles because you don't require them to give evidence for claims.]
  • Why it's critical to an informed citizenry for print journalism to survive, especially at local level (In-depth coverage of local issues, helping citizens understand issues. Prefer to be dumb or want others to decide your every-day life for you? Then don't support local papers who inform you.)
  • Negative impact of Digital Age on print journalism (including many excellent journalists losing jobs and pitfall of rush to immediate reports that are often false.) [Guess you don't care if info is wrong.]
  • Positive impact of Digital Age on print journalism (Mostly ability to inform citizens in real time. One of the pros of the Digital Age, but downside is the first information may be wrong, and often is.)
  • Strategies for how print journalism, often denigrated 'main stream media', can survive. [They need your help.]
CONCLUSION
I'm just a senior citizen who sees the past, present, and future of newspapers and hopes print journalism, with its high standards, will find a way to survive.

I've no doubt omitted many key issues but hope you can see why such a course would be a wonderful resource for Edmontonians, especially the young, but indeed everyone.


And Paula Simons would be first of many experts I recommend to teach the course. Others include (not an exhaustive list)
FURTHER READING

[Small sample of ethics of social media companies the young rely on. Won't even start on Facebook.] 

Apple should repay Ireland €13b, European Commission rules (30 Aug. 2016) | Only paid ~ 0.005% in 2014

Yes, Google Play is tracking you — and that’s just the tip of a very large iceberg (14 Sept. 2016)

Google agrees to £130m UK tax deal (23 Jan. 2016)

Google searched for (and found) the perfect tax havens (14 Sept. 2016)

Monday, September 12, 2016

My take on Buddhism (Wherever you go, there you are)

Updated: 22 June 2018 (Fixed links, increased clarity)
Decided to expand on my journey into Buddhism to help readers understand where I'm coming from with regard to my husband's IPF and Esbriet

First, Buddhism may not even be a religion as it doesn't propose, as most traditional religions do (Christianity, Judaism, Islam), that there is a supreme, all knowing being who created us, our earth, indeed the entire the universe.

BACKGROUND
Think about the universe. We don't know where it ends and it may go on forever. Today's astronomy experts estimate the total stellar population at roughly 70 billion trillion.

One of which is Earth, the pale blue dot  as Carl Sagan called it.
Traditional religions ask us to believe that we are special, the creatures that know and know we know. That's true but evolution clearly shows that we're just one branch of life on earth that began of millions of years ago. Canada's Margaret Laurence balanced the two truths well:


Yes, I believe in Dawkins' The God Delusion. And The Greatest Show on Earth is awesome, a word I seldom use. 


FACT: When you examine human DNA and those of other  living creatures (not just primates ~gorillas, chimps), you see that all life is related, we're all distant cousins, not just with apes, birds, cows, pigs, fish, whales, but even with the vegetable kingdom of trees, plants,etc. Evolution is not a straight line but consists of branches that led to different life forms.

Despite the great diversity of life, we are connected with all other life forms. Yes, I believe I'm distantly related over millions of years to the veggies I eat. Occasionally I mutter, 'Sorry, little buddy' when eating a pea or carrot.

BUDDHISM
So, where does Buddhism fit and why does it resonate with me and help in coming to grips with a fatal disease in a loved one? What follows is my lay person's take on Buddhism. My views are based mainly on three books:

Four Tenets of Buddhism
Usually called the '4 noble truths', these ideas are what spoke to me from the get-go. How I see them (my words):

1. Life consists of suffering;
2. We suffer because we overly cling to our desires and possessions and become sad when we lose them. We see life as being 'all about me' and our needs;
3. We can end life's suffering if we see its true cause;
4. The way to end suffering is to follow the ''Eightfold Path'.

How to end suffering
Please remember that the Buddha (Siddhartha Gautama) lived in India between the sixth and fourth centuries BCE. Like traditional religions, many myths and legends and lack of reliable history, make it impossible to know if he existed and who the heck he was (See Further Reading - Ancient History Encyclopedia).


Buddhism grew out of a reaction to Hinduism, similar to how Protestantism was a reaction against Roman Catholicism. As such Buddhism includes reincarnation and karma, but western Buddhists like me are free to reject reincarnation. Karma is what my spouse often says:

  • What goes around comes around.  
  • Always take the high road.
Here's what 'Sid' said about how to end suffering:

1. Right Views - Believe that the cause of human suffering is because we strongly cling to our needs, often basing our happiness on our possessions and the actions of others towards us. Believe in all the 4 Noble Truths.

2. Right Intent - Do we really want to deal with the issue of what causes suffering? Are we prepared to be single-minded and persistent?

3. Right Speech - Become aware of what our speech says about our character and identify the motives that lead to being unkind. Strive to become more truthful and charitable to others.

4. Right Action - Understand why we act as we do, and try to behave better, e.g., don't lie, steal, kill (more or less Christianity's 10 commandments).

5. Right Livelihood - A man of his times, Sid included slave trader, prostitute, arms maker, and occupations like butcher as ones not to become. Reminds me of my Dad's view of used car salesmen, which caused me to go into helping professions, first high school teacher, then medical laboratory technologist, transfusion educator, and finally consultant and webmaster/mailing list manager.

6. Right Effort - It's hard to follow the main precepts of Buddhism (being a better person) and takes much effort. I see it as a journey, not a destination, because I fail daily but still strive.

7. Right Mindfulness - Being intentionally aware of our thoughts and actions in the present moment, non-judgmentally.

8. Right Concentration - Concentrate when meditating, focus the mind. Goes together with 'right mindfulness'. The two taken together become the practice of meditation.

OTHER BUDDHIST CONCEPTS
Four more key Buddhist concepts that resonate with me:

1. Impermanence. Everything in life is impermanent. Our bodies decay, relationships change, even mountains erode. Change defines life. Don't cling to possessions, loved ones, a cozy existence. Don't depend on others for happiness. 


We will eventually die. Indeed, ultimately, we will all lose everything we hold dear. And it's normal. Put another way, 'Get over yourself.'

2. Loving kindness. Before we can love and help others we must love ourselves, be kind to ourselves. 
Only once we love and accept ourselves for who we are, our strengths and weaknesses, can we truly give ourselves to others.

3. Dont-know mind, sometimes called a beginner’s mind, is wide open, not closed. What I love about Buddhism is that it's open to questioning. In brief, if something sounds like BS, subject it to evidence and reject it if it doesn't meet the test. 


4. There is no self. This is tough concept to understand. When we say my body, my needs, who the heck is speaking? Is there a person inside our head that is "I"? If so, who is this 'being' and is it separate from our bodies? Does what traditional religions think of as an everlasting soul separate from our body exist? Buddhism says No.

SUMMARY

Born into a Western culture and trained in the scientific method, there are parts of Buddhism I reject. Rather I see myself as believing in core, original Buddhist teachings, i.e., concepts that are generally accepted as true by all the branches that arose as Buddhism spread in Asia and beyond, e.g., Mahayana Buddhism and Theravada Buddhism each with various sects. Certainly, I reject reincarnation and the transmogrification of Buddha into a near god-like creature, with bejewelled statues in monasteries. 

And I don't get hung up on the words in Pali, the language of Theravada Buddhism, words such as anicca (suffering), dukkha (suffering), et al.

Bottom line: What does Buddhism mean to me? To end life's suffering, see its cause as being 'all about me'. Focus on why we behave poorly and try to be a better person by following the eight paths to end our suffering and become happier. Simply put, live in the present, lead a moral life, and use mindfulness meditation (2 min. video) as a tool to reduce stress and improve wellbeing.


Humans have evolved as life forms who know and know that we know. Buddhism proposes that we are all in this world together, that all living things are part of the same family of life on Earth.

So there you have it. My take on Buddhism, why I value it and how it helps me cope.

FURTHER READING


Buddhism, an introduction (PBS)


5 minute introduction to Buddhism


Siddhartha Gautama (Ancient History Encyclopedia)

Thursday, September 08, 2016

IPF and Esbriet (Musings on extended life vs quality of life)

Updated: 12 Sept. 2016
Another blog, probably the last for awhile, on my spouse having idiopathic pulmonary fibrosis (IPF) and its treatment with pirfenidone (Esbriet®). 

Earlier blogs documented the initial diagnosis through getting Alberta government funding for Esbriet® via the Short Term Exceptional Drug Therapy (STEDT) program, to problems with serious drug side effects.

This blog discusses the difficult decision to stop taking Esbriet
® because of its side effects and resulting poor quality of life. In brief, after decreasing the daily dosage from 2403 mg/day (nine 267mg capsules/day) to six/day (two per meal), Peter has decided to opt for a side-effect free existence, knowing it will likely shorten his life. A tough decision, to say the least. 

We must thank Peter's pulmonologist for his ongoing support and the Inspiration™ Patient Assistance Program's nurses for their support while on Esbriet®.

First, research shows that pirfenidone, while not a cure, helps prolong life. And for those who have few side effects or cope with whichever ones they have, wonderful. Indeed, the day that Peter received Alberta government funding was a happy day. And we thank friends who wrote on his behalf to support government funding. 



Many articles on drug side effects encourage you to try everything to lessen them. Peter tried that by decreasing the dose from 9 pills/day to 6/day. He stayed out of the sun after getting a rotten rash, one of pirfenidone's side effects requiring him to stay off the drug for a month. And he took the pills with food.

About the sun, he wasn't thrilled about the need to wear long pants and long sleeves and a broad rimmed hat, and be slathered with 50+ SPF suntan lotion on any exposed skin in 25oC weather.


 It pretty much meant our visits to Edmonton's beautiful Hawrelak Park and vacations to Hawaii were kaput.

Yes, enjoying the sun was a luxury, but why did Peter decide to give up the drug that could prolong his life? In brief, it was because the drug's side effects made his life miserable. Even on a reduced dosage, life was hell. More specifically, the most serious side effects (won't stress others like dizziness) included: 


1. Insomnia. Being awake most of the night is not fun, and it requires the need to sleep during the day, creating a cycle.

2. Decreased energy, being constantly tired. These go with IPF and it's ironic that the drug exacerbates them.

3. Gastro-intestinal: Bloating, gagging, retching upon eating, plus ongoing cycles of constipation and diarrhea.

4. Altered taste. Food that was earlier loved now tastes awful, requiring all to be covered in ketchup. Soon ketchup too becomes unbearable. Desire to eat anything loses its appeal. 


In summary, on Esbriet® Peter was exhausted most of the time, barely able to get though each day, unable to enjoy food or life outdoors. Having energy for only 2-3 hours each day, and then being totally exhausted was depressing.

Without the drug, IPF's limitations exist, most notably

  • Everyday tasks like getting dressed or walking short distances are exhausting; 
  • He never know when he will need to cancel an event with short notice because energy comes and goes unexpectedly;
  • Travel becomes iffy due to the risk of getting a cold, which can be devastating for those with lung diseases.
But off Esbriet Peter has more energy, decreased insomnia, can enjoy food and the outdoors, and his outlook has improved, as would be expected. He becomes more of the person he was before being diagnosed with this incurable, crappy disease. Meaning he laughs, smiles, jokes and keeps me laughing as he has for the 44 years we've been hitched. 

Whatever the future holds, we'll deal with it, head-on. Peter is exercising on our treadmill as a way to prolong life, even a bit, and, for sure, create an increased ability to enjoy life as the disease progresses.

In Comments I indicated I'm a Buddhist, so decided to wrote this blog
Further Reading

Last blog: To be or not to be (Musings on IPF and Esbriet)

Duck A, et al.  Perceptions, experiences and needs of patients with idiopathic pulmonary fibrosis. J Adv Nurs. 2015 May; 71(5): 1055–65.
  • Research's purpose was to highlight the significant burden IPF has on a patient's quality of life.
But 99% on Esbriet reported 1 or more treatment-emergent adverse events, 57% reported severe adverse events.They include as SAE. Sounds like BS,no? Surely realities of disease leading to SAE means drug did NOT help.

Thursday, August 25, 2016

Postmedia's Thomson, not Alberta Premier Notley, uses overheated rhetoric

Quick and dirty blog to get something off my chest. Respect Edmonton Journal's Graham Thomson and have done so for years. I'm going to disagree with his latest column and criticize him. Because he's not above criticism, though Edmonton Journal colleagues will likely dump all over me for daring to do so. 

Lately Graham has morphed into a typical Postmedia journo whose biases show via use of ridiculing language, similar to that typically used by journalists in National Post during Alberta and Canadian 2015 elections. Was it because they believed what they wrote or to please CEO Paul Godfrey? You decide.

Examples of language in this Graham Thomson's column: 
Notley's overheated rhetoric roasts her own credibility (24 Aug. 2016)
Note over-the-top, overheated pejorative language he uses: 
  • crowed Notley
  • ram through
  • wildly out of touch
  • railroaded the vote
  • ridiculous logic 
  • ridiculous rhetorical flourishes 
  • verbal flame thrower
  • demonize conservatives
  • rhetorical cheap shot
What struck me most in this column, even more than his Postmedia ridiculing language, and makes me wonder if he's gone over to the 'dark side' (sub-consciously fearing for his job or listening to too many right-wing politicos?), was Graham trashing Notley for saying of PCs:
“Their idea was that if you fire thousands of teachers and teacher’s aides and school support workers and nurses and nurse’s aides and people who work in the hospitals that somehow the price of oil would go back up.”
Graham's sarcastic comment: 'Really?' Then he further ridicules the Premier to support this false accusation.
To me, Notley's rhetoric (price of oil would go back upclearly meant nothing more than the PCs habitually believing that saving money by cutting education and healthcare staff will make everything alright. Because that's the longstanding PC/WRP fix for all of Alberta's ills. That and giving the oil industry tax breaks. 
I for one will never forget the 1990s when PC 'King Ralph' cut 40% from the province's lab medicine budget plus devastated healthcare funding in general, with laboratory technologists, nurses, physicians out of jobs, fleeing overseas if they could. The ramifications for Alberta were devastating for decades. 
That's the legacy of the PC's go-to fix for saving money, balancing budgets, rather than increasing taxes in line with rest of the world on energy companies. Or other strategies like diversifying the economy by moving to sustainable energy so that oil prices do not control and determine Albertans' lives so significantly, the main legacy of PC's 44+yr reign.
Toe end this short blog, Thomson's language is overheated, folks, undermining his credibility. Rachel's speaks to Alberta's history of decades of PC rule and its sad legacy.

Saturday, May 07, 2016

Postcards from the ED in Greater Edmonton (Musings on a battered woman)

A mini-blog on what you observe in an Edmonton, Alberta hospital emergency department (ED) - a small anecdote that I thought worthwhile to relate that occurred in the University of Alberta Hospital.
  • A policeman accompanies a young (20ish) black woman into the ED, She is brutally beaten up with severe bruising all over her face and scrapes on her hands as if she had been dragged on cement. 
  • She avoids eye contact with other ED patients, sits quietly with eyes focused on the floor. 
  • The policeman speaks in respectful and kind tones to the young woman and explains he's going to talk to a physician and she should remain in the ED waiting area. 
  • A well dressed woman, perhaps a minister, accompanying an older disoriented woman, leaves her charge, approaches the young battered woman, and sits beside her quietly saying a few words. The young woman begins to cry silently, with tears streaming down her face. 
  • The policeman comes out of the ED 'pod area' with a physician who looks at the young woman and says, yes, let's take her in immediately.
MUSINGS
In reviewing this 'slice of life' both I and my spouse begin to cry. When you see the results of violence on an individual human being it makes it so much more real than statistics. 

We don't know if this young woman's beating was a case of domestic abuse but it may have been. This issue has only gotten worse in Alberta since the collapse of oil prices and resulting economic downturn.

Source: Domestic silence: Meet the faces of abuse (by Jana G. Pruden, Edmonton Journal, 15 Nov. 2015)
Alberta has one of the highest rates of reported intimate partner violence in the country. There were almost 13,000 calls to police in the province in 2013, nearly 8,000 in Edmonton alone. 
A recent report by The Alberta Council of Women’s Shelters showed more than 10,000 women and children stayed at shelters between spring 2014 to spring 2015, and nearly double that — almost 19,000 women and children — had to be turned away because of lack of space. There were more than 50,000 crisis phone calls to shelters in the same period. 
Since August, four women have been killed in alleged or confirmed domestic homicides in the Edmonton area.
As someone who observed up close the abuse of a beloved aunt for years, I'm well aware why victims may stay with abusers, especially if they have multiple children to care for, they have never worked outside the home, and abusers provide a roof over their head and food on the table. 

About the young victim's demeanor in this case, with eyes focused on the floor, we wonder if she wrongly feels shame at being beaten up, as if it reflects on her worth, not the character of whoever battered her. That possibility is sad indeed. 

A map of Alberta's women shelters includes Fort McMurray. It's currently unknown if its facilities survived the wildfire. In any case, please consider  donating to Alberta's shelters. They need your help and support day in day out, year in, year out.

Thursday, May 05, 2016

While my guitar gently weeps (Musings on the political fallout of the Fort Mac fires)

Updated: 6 May 2016
This Thursday, on his regular spot on CBC's Edmonton AM, Paul McLoughlin, publisher of Alberta Scan, brought up the politics of the catastrophic Fort McMurray wildfires. I'm glad he did because it's been on my mind ever since the widespread devastation of the wildfires became clear.

Until now, I've been afraid to write anything because of potential twitter bullying. As someone with atypical ideas on sensitive subjects, I fear that tweeps with tens of 1000s of followers may casually and wittily trash ideas that clash with their world view. Then their followers retweet it and some may even jump in to dump all over me for having a different opinion. Been there, done that. Such is today's Twittersphere. But so far I've never suffered the unforgivable abuse some celeb female tweeps have. Fingers crossed I never will.

This blog is not about the suffering of those affected by the devastation or about their strong spirit and 
resilience or about how Albertans and Canadians have rushed to their aid. Others have written and will write on these important features as the weeks and months of the disaster's recovery and relief progress.

Instead the blog offers a few musings on 
  • What comes next, after the Fort Mac wildfire is controlled and we're into the recovery phase and 
  • How informed citizens should monitor the behaviours of politicians and their operatives. 
The blog's title is from a 1968 Beatles ditty by George Harrison,While my guitar gently weeps.

Of course, it's an unwritten rule - and common human decency - that politics should never be mentioned early in the game when the lives of many people are so profoundly affected, in this case suddenly and rapidly. During the crisis, the important things are for all concerned to concentrate on saving lives and key infrastructure, and getting the disaster under control.

But 'natural disasters', regardless of their multiple contributing factors, often portend political disasters too. Think Hurricane Katrina and the undoing of George Bush.

MUSINGS - WHAT NEXT?


What can go wrong with disaster recovery?
Well, the possibilities are endless and include:

1.When a disaster has widespread and long term negative consequences to people's lives, opportunities for screw-ups abound. It's worse if the disaster has never happened before or if it's the biggest of its kind, because few or no templates for what to do exist, except in general terms. But the devil is always in the details.

2. Fort Mac's disaster has not occurred in a vacuum, which also complicates what can go wrong. Alberta already suffers from over-reliance on oil revenues, thanks to 44 years of PCAA governments. Rachel Notley's NDP government has opted to run deficits rather than cut back on education, healthcare, infrastructure, and more. Those on the right of the political spectrum already judge maintaining social programs at the expense of a deficit to be a huge blunder and show the NDP's incompetence.

The bill for Fort Mac's disaster recovery is likely to run into the $billions. The funds will come from the Alberta and Canadian governments and insurance companies. Already large government deficits will grow. How many Fort Mac citizens had adequate insurance on their properties and possessions is another matter.

3. Invariably, governments cannot respond to the needs of thousands of devastated citizens soon enough. The needs are too many and life doesn't stop because of the disaster. Many competing priorities exist and government must deal with them. Other emergencies may arise.

4. That's when those affected by the big disaster start screaming about how the government is doing nothing. We've all seen it on the news and it's heartbreaking for the folks involved. But it doesn't mean governments have failed. Only so much can be done and, in the view of those suffering, seldom will it be timely enough and sufficient.

5. Also, all media delightfully supply a megaphone for the victims. Especially Postmedia, which consistently runs anti-NDP propaganda. They'll have a field day once the b*tching starts and make sure every Canadian knows about what an awful job Alberta's NDP (and Canada's Liberals) are doing on the Fort Mac file.

What can go right with disaster recovery?
Well, the government and its civil servants, who carry much of the load of disaster response and recovery, can do their best, do most things right, and get some credit from citizens. 


It helps if local media are fair and balanced and some are. Unfortunately, many good folks have lost their jobs due to cutbacks, but some remain, including the Edmonton Journal's 
However, Postmedia's near monopoly has an effect. One or two voices of reason tend to be drowned by multiple big-name columnists writing for the National Post, promoting Postmedia's party line/orthodoxy, and carried in local newspapers that are part of its chain.

MUSINGS - WHAT TO MONITOR?
Let's return to the unwritten rule not to take political advantage from a tragic disaster like Fort Mac's wildfires. So far Alberta's opposition parties have not overtly stooped to benefit from the tragedy.

WRP's Brian Jean, a resident of Fort Mac, is a naturally sympathetic figure as he personally lost much due to the wildfires.

More interesting is this tweet from WRP political operative, Vitor Marciano. Even if a genuine Jean moment, it's self-serving. Most folks who do truly selfless things don't take pictures and have operatives distribute them to the masses.

So I suggest citizens interested in politics monitor the Twitter accounts of politicians on the right and their surrogates, including those in the media. Will they bond together and fully support the Alberta and Canadian governments in their Fort McMurray recovery efforts over the difficult challenges on the long road ahead? Or as soon as folks complain, will they use it for political advantage?

My guess is that sooner, not later, politicos and their operatives will start to dump on Notley's government (Trudeau's too) over the handling of the Fort Mac tragedy. Bet on it. They'll distort events and spin anything for political advantage. And the Fort Mac wildfires give them an opportunity like no other.

At first it'll be subtle, because they're not stupid. The foundations have been laid already with Marciano's self-serving tweet portraying WRP Jean as hero-personified. Of course, I could be wrong  - and hope so - but time will tell. 

SUMMARY
As noted, this blog focuses on political aspects of natural disasters and their aftermath. The scale of the Fort Mac tragedy presents enormous challenges to all levels of government and the private sector too. As such, it will serve as a valuable case study in not only disaster relief and recovery but also in the politics of disasters. For the latter, it's useful to monitor a government's political opponents to document how they attempt to gain political advantage.

In the meantime, please support the 
Your donation will be matched by both the Alberta and Canadian governments.

FOR FUN
What to do when you see the future and can do nothing about it? Write a blog, of course. 
Some lyrics unused in the final version caught my fancy:
I look at the trouble and see that it's raging,
While my guitar gently weeps.
As I'm sitting here, doing nothing but ageing,
Still, my guitar gently weeps.