Speaka de English, Please

The European Union commissioners have announced that agreement has been reached to adopt English as the preferred language for European communications, rather than German, which was the other possibility.

As part of the negotiations, the British government conceded that English spelling had some room for improvement and has accepted a five-year phased plan for what will be known as EuroEnglish (Euro for short).

In the first year, "s" will be used instead of the soft "c". Sertainly, sivil servants will resieve this news with joy.

Also, the hard "c" will be replaced with "k". Not only will this klear up konfusion, but typewriters kan have one less letter.

There will be growing publik enthusiasm in the sekond year, when the troublesome "ph" will be replaced by "f". This will make words like "fotograf" 20 per sent shorter.

In the third year, publik akseptanse of the new spelling kan be expekted to reach the stage where more komplikated changes are possible.

Governments will enkorage the removal of double letters, which have always ben a deterent to akurate speling. Also, al wil agre that the horible mes of silent "e"s in the languag is disgrasful, and they would go.

By the fourth year, peopl wil be reseptiv to steps such as replasing "th" by "z" and "w" by " v".

During ze fifz year, ze unesesary "o" kan be dropd from vords kontaining "ou", and similar changes vud of kors be aplid to ozer kombinations of leters.

Und efter ze fifz yer, ve vil al be speking German like zey vunted in ze forst place....

Headwinds and Tailwinds *

I have become quite a fan of a new blog I discovered a few months back.  The name is Kilometres for Communication - you can find it on the sidebar.

What's it all about you ask?

This blog is about communication. It’s about a special kind of communication called AAC. (I personally struggle with this term; it stands for Augmentative and Alternative Communication, which is too much of a mouthful for me. AAC is simply an alternative way to communicate when someone has limited or no speech.) This blog is about disability, and navigation of disability in a society which orients itself towards people who are able-bodied. But this blog is also about ability, diversity, capability, possibility, hope. It is about our humanity, and about our connection–one person to another. It is about community and inclusion, and about how wrong it is for any of us to exclude and to make the decision that someone does not belong because he or she is different. So this blog is also about the importance of accessibility, because accessibility is a key to inclusion, belonging and community.

A family affair - the 17-year-old younger brother of "an artist, educator, social activist, writer, story teller, gardener, community facilitator [who] happens to travel in a wheelchair and communicate with AAC" proposes (family in tow) to cycle across Canada to ... well, how about if I let them tell you?

We would meet with people who speak in creative and diverse ways, and with the help of the media, introduce them to Canadians so that never again could they equate not being able to speak with not having anything to say. We would invite people to wheel, walk, run and cycle with us, and we would invite organizations, small groups of people and individuals to host events across Canada to raise public awareness and funds to empower voices and to make accessibility and inclusion a national priority for the more than 3 million Canadians with disabilities.

Although a lot of people have walked, ran, biked, etc. across Canada to raise money and awareness on issues like cancer and for other "good causes" and the man in motion is back at it (actually I'm not sure he ever really stopped), I've never heard of anybody doing quite this. I've never heard of anyone giving a voice to people who struggle to communicate in our world quite this way.

And, as if that weren't enough, Skye (the main writer of the blog) often amazes with such a beautiful voice for such a young man.

The blog sets out his cycling journey from West to East coast (he is currently in Manitoba) but he ends many of his posts by connecting the logistics of his travels to the point of his journey.  Such as he did on Day 4 - West Vancouver to Mission BC, traveling through the mountains in British Columbia.

We all need to be explored. It’s a tragedy that there are people on this planet whose speechlessly brilliant summit will never be discovered because the people around them don’t realize that the hike is worth it. Remember this: the hike is always worth it. Always assume ability, and listen with the patience, care, and effort that you would want anyone to listen to you. Often, the hike is the best part.

Even though I have friends whose young adult children are non-verbal, the world of AAC (augmentative and alternative communication) remains foreign to me.

And so it is that, as if through a lens, I follow Skye's blog and observe and learn and think more and more about what it must be like to have people assume you have nothing to say simply because you find it difficult to communicate or to have them walk away as you struggle to communicate because they don't realize that's what you're doing (or maybe they just don't care) - I mean, it's a busy, busy world we live in and I can only stand here and wait so long, you know.

Tick. Tock. Tick. Tock.

But today's blog post was written by his mother, Gail, and titled "Headwinds, Tailwinds, Lessons Learned" (* hence the title of this post).  It was these two paragraphs that really caught my attention - and made me reflect on our own life with the Blue Jay.

It is now a number of days after I originally began writing this blog entry. I’m sitting in the RV by the side of the road in Moosomin, Saskatchewan, waiting for Skye to appear on this windy, rainy afternoon. By the time he arrives, he will have pedaled 48 kilometres since we last met. The promised tailwinds that are supposed to assist Skye on his journey have been elusive. Tomorrow, they are supposed to blow tomorrow, just as yesterday, they were supposed to blow today. It’s a mental challenge, waiting for these helpful tailwinds, yet getting back on the bike to pedal in the face of more headwinds.

In so many ways, this is the story and the feel of Kerr’s [Ed. Sky's brother] life—the hope and promise of helpful tailwinds; the disappointment when instead he is met with headwinds: the funding that doesn’t come through, the education that doesn’t happen, the waiting lists that never seem to get shorter, the well-trained assistants that need to move on in their lives. How does Kerr—and how do we with him—get back on the bike and keep pedaling?

Headwinds and tailwinds, indeed ... that would be a good way to describe our current experience with attempting to help our now 18-year-old daughter master that transition from childhood to adulthood, which can be hard enough for any adolescent but so much more challenging when you're ... well, challenged.

I must admit that I have felt somewhat like a bull in a china shop of late as I struggle mightily, furiously (and yet often it seems in vain) to help her access the services she currently so desperately needs.  Transition planning and more work on life skills at school.  And counselling or meds (but why would you choose medication when you have a pretty good hunch that counselling would do the trick, if only she could access it?) in managing her emotions, letting go of obsessive thoughts and learning better social skills.

But she's too high-functioning.  And yet not high-functioning enough.  She is too old.  Or she doesn't qualify because she's mentally challenged.  Or she doesn't meet some other criteria for service to this or that group because ... fill in the blank. I've pretty much heard it all as of late.

And yet, despite the headwinds I seem to battle, on a daily basis, at every turn, every once in a while I will find myself screaming talking to the right professional, a person who can and does seem willing to make that extra effort to find the Blue Jay the help she needs.

Talk, of course, is cheap.  And the proof is (and always will be) in the pudding.

But when I somehow stumble upon those rare individuals who actually seem to hold out hope (of doing baseline testing and setting appropriate work and life goals at school or the elusive referral to the psychiatrist that specializes in adolescents with various challenges or ... is it really too good to be true ...the possibility of a way to access funding for one-on-one counseling), it's like suddenly coming around a bend during a seeminly never-ending uphill climb and unexpectedly finding the headwind you've been battling might just be gone.  And perhaps, just perhaps, the wind might actually be at your back for a change.

I'm hoping Skye will soon find those elusive tailwinds.  And that people will pay attention to his cross-country journey and, more importantly, the reason he is doing what he is doing.

At the same time, I hope this isn't just some trick or sleight of hand and my own headwinds are finally diminishing.  Wish us all luck. We will need it.

They Never Had A Chance

Our provincial newspaper has just wrapped up a five-part series looking at "care options available to vulnerable person with intellectual disabilities across Canada".  The series was well done (the writer, Canadian Press reporter Michael Tutton, writes a fair bit in regard to issues around persons with disabilities) and it was an interesting, albeit hard read.

From the woman in Nova Scotia whose 20-year-old grandson spent 15 days locked alone in a constantly lit room at the Braemore adult residential centre with only occasional breaks, urinating in a corner when he was unable to get a staff member’s attention...

... to the aging mother in Newfoundland who worries who will care for her severely-challenged adult son when is was no longer around to do so...

... to the 16-year-old with a severe case of fetal alcohol spectrum disorder (making him impulsive, easily frustrated and with very little short-term memory) whose increasingly violent behaviour deteriorated to the point where his adoptive parents could no longer care for him in their home but whose current life in small group homes has been a disaster, allowing him to stay out all night, drinking and doing drugs...

... to the issues of aggression that can stem from poor housing options and lack of access to mental health services for those with intellectual disabilities (an issue I can personally speak to when it comes to the Blue Jay being denied access to our local child and adolescent mental health services for the simple fact that she is mentally challenged).

To the one bright spot, the what can could and should be - namely, the positive effects of housing and care options that actually work, like L'Arche.

A happy, safe home and community involvement - at some level, isn't that all any of us really want for our children when they mature into adults, whether they be mentally challenged or not?

And yet, I write not about any of those stories today. 

Instead I write about a baby boy "who never had a chance". 

His young mother squatted on the bathroom floor to deliver him while the baby's father stood in the doorway, smoking a cigarette and ignoring her pleas to call an ambulance. Finally she reached over to the bathroom sink, grabbed a pair of scissors she believes her boyfriend used for his dope and cut the umbilical cord.

The baby wasn’t crying. She left him on the floor, went out into the living room, sat on the chesterfield and watched television as Cunningham cleaned up the bathroom.

The infant was dead at birth, she said. "He wasn’t crying or breathing or nothing."

Oickle testified at Cunningham’s preliminary inquiry last December that she saw Cunningham put the baby into a box and then put the box in a derelict oven in the hallway outside their apartment.

The body stayed in the oven for five days until family members found out about the birth and persuaded Oickle to take the baby to nearby Queens General Hospital.

As sad (and depraved) as this is, unfortunately, it's not uncommon. And, thus, it was this part of the story that really grabbed and held my attention.

A neuropsychological assessment and a forensic report found Oickle fit to stand trial and criminally responsible for her actions, although she has an extremely low IQ — in the bottom one percentile of the population — and limited coping and problem-solving skills.

Bryson said those factors help explain Oickle’s actions.

Defence lawyer Franceen Romney, who represented Oickle, said the assessment shows Oickle is able to handle routine situations but not complex ones. In such cases, her reasoning, judgment and ability to make decisions are impaired.

An IQ in the bottom one percentile of the population means that this young woman "officially" qualifies as being "mentally challenged".

Given that we have no information about the boyfriend's "mental capacity", I can make no judgment in that regard although I must admit that a great deal of my anger is directed against him. He who callously stood by and refused to make a simple phone call (or even allow his girlfrind to do so) while his own child was dropped onto a bathroom floor and then scrubbed up that same floor, placed the baby's dead body in a box and leaving it in a derelict oven in the hallway of their apartment building.

I am deeply saddened by this young woman's story.  Fortunately, some sort of justice seems to have prevailed in that although she was convicted of failing to obtain assistance during childbirth, she was placed on probation for three years, during which time she must have no contact with her boyfriend, get mental health counselling and live with her parents.

Am I too easily "letting her off the hook" for her actions?

Or am I looking at my own 18-year-old daughter, with similar ability levels, for whom I fear a society that would just as easily manipulate and hurt her?  I must admit that I think that being "forced "to live with her parents is likely the best thing that could possibly happen to this young woman. 

After all, what other options are there for her?

Blows My Mind

This video is freaking amazing. *



Lex posted it for the very low altitude barrel roll at 24 minutes that resulted in a knock it off and the team cancelling the rest of their schedule to return to Pensacola for further training. (See I almost sound like I know what I'm talking about!)

But to a ground hugger like me, the whole video was amazing, albeit a little too long.

* I would highly recommend you watch it full screen with a cup/mug/glass/bottle of your favourite beverage in front of you. And get comfy.

"Twits" Expanding Definition of Online Hate Crime?

Once upon a time, in a land far, far away, I wrote about the Electronic Frontier Foundation's Legal Guide for Bloggers, which attempts to help bloggers figure out and stay clear of some of the legal liability issues potentially involved in, well, blogging.

Now, as if there weren't enough to think about, today I came across this. 

I can't say it's really surprising - I mean if you're brainless enough to post something stupid on Facebook, Twitter or wherever, you probably deserve what you get. 

Anyone who hasn't yet figured out that police, reporters and future (and even current) employers will check up on what they're on to line ... well, let's just say they're not the brightest crayon in the box.

So, let's just hope all the twits tweeters out there remember that, too.

Although I must say that getting fired for simply stating what many might consider the obvious does seem a bit much.

Goddard landed in hot water last week after retweeting a comment by Twitter user @Uptownhockey, an account for Burlington, Ont.-based Uptown Sports Management, which stated: "Very sad to read Sean Avery’s misguided support of same-gender ‘marriage.’ Legal or not, it will always be wrong."

In his own tweet, Goddard wrote: "I completely and whole-heartedly support (Uptown’s) Todd Reynolds and his support for the traditional and TRUE meaning of marriage."

Let's hope they have a lot more than that backing them up when they try to defend a wrongful dismissal suit. Free speech anybody?

But if you thought that was bad, you might just want to sit down for this one.

Are the federal Conservatives trying to kill use of the hyperlink in Canada?

As ludicrous as that sounds, pending legislation in Ottawa seeks to amend the Criminal Code in a way that would make people who hyperlink to other websites potentially guilty of a hate crime if those linked sites wilfully promoted hatred against an identifiable group.

The wording in question in Bill C-51 is as follows:

"Clause 5 of the bill provides that the offences of public incitement of hatred and wilful promotion of hatred may be committed by any means of communication and include making hate material available, by creating a hyperlink that directs web surfers to a website where hate material is posted, for example.

The changes are touted by government as necessary to "modernize the Criminal Code in light of new technologies as well as to arm police with stronger powers to investigate computer-based crimes.

Yup, as crazy as it sounds, it appears that our esteemed Conservative government is seriously considering amending the Criminal Code so as to potentially make a blogger guilty of a "hate crime" for linking to a website that contains "hate material".

Now, I'm all for updating all manner of laws to deal with this brave new world we find ourselves in (including the rules of parenting!) but does anyone think this might be going just a little too far?

As pointed out by Mr. Schneidereit, what if the blogger didn't know the website she linked to contained such material? What if the material was posted to the second site after the link was established? What if the site linked to wasn't "hateful" but it (either now or later) linked to a site that was?  What if we've all gone down the rabbit hole?

And just as an aside, not that I am any fan of our current government, but doesn't "conservative" generally mean "less" government, not "more"?

 I mean I could see the federal NDPers trying something like this and giving all us "left leaners" a bad name. 

But the Conservatives?  Really?

Perhaps it's time we all put the mouse down and stepped away from the computer.

Thought of the Day

Eternity's a terrible thought.
I mean, where's it all going to end?

~ Tom Stoppard

Creative Writing - Potential Op Ed Piece

UPDATE: This was published as an op ed piece in the Chronical Herald on May 19, 2011. Not quite the headline I was going for but we will take what we can get.

It's a good thing I'm not Ralph from The Honeymooners because I'm seriously tempted to threaten to send the Nova Scotia Department of Education "straight to the moon" at the moment.

First, the Department amends its Teacher Assistant Guidelines to eliminate any reference to supporting the teaching of students with special needs or providing "support for instructional program", leaving the only remaining job responsibilities of a TA as "personal care" and "safety/behaviour management support". If you don't have a child with special needs or aren't otherwise involved in the school system, that may not mean much to you. But if you do, it’s not hard to picture exactly what that bodes for the future.

Now, we learn that a review of the Province's public education system is calling for the Province to "consider reducing the number of teaching assistants in special education". Does anyone else see any connection here? Is this the beginning of the end of a proper education for our children?

The Province's newest Teacher Assistant Guidelines provide that "Teacher assistant support should be considered only when the student cannot perform prescribed outcomes independently, as determined by the program planning process" but I have to wonder how even those students will receive support when 1) supporting students who cannot meet prescribed outcomes (independently or not) is most definitely no longer part of a TA's job description and 2) the current recommendation is to cut back on the number of TAs when many would argue we don’t have enough to do the job now.

I find Mr. Levin’s concern about the number of students receiving special education services due to an increase in the "soft" areas of identification, like “students thought to have learning disabilities or behaviour problems” rather odd. If he had spent any time at all in Nova Scotia's schools he would know how difficult it is to obtain any special education services for such students. Students are not considered to have a learning disability simply because a parent or teacher thinks this may be so; services won’t be offered (if at all) until a student has been diagnosed by a qualified psychologist. And, given the wait times to be seen by a school psychologist, students can literally wait years for that type of assessment.

It's Baaack...

It seems almost anti-climatic to even comment on Bin Laden's capture (everybody who's anybody having already done so and a good many jokes having crossed the airways at his expense).  But, besides the almost guttural feeling of satisfaction that filled me when I realized the words I was reading were not a hoax, two things struck me about the event.

The first was that the Global War on Terror appears to have made a reappearance (for how long, who knows?) with Bin Landen's death.  I mean wasn't it known as the Overseas Contingency Operation for quite a while now?  And yet, right there, on the American TV news, just last night, they stood at 'Ground Zero' and talked about the GWOT. Who'd have thunk it?

The second thing that struck me (again watching American news on TV) was that after Bin Laden's body was taken to the USS Carl Vinson, it was washed and wrapped in a white sheet (as is the Muslin custom) before being thrown overboard. After all, Muslim tradition requires the dead to be buried within 24 hours.

The burial at sea largely followed widely accepted interpretations of Islamic law taking care not to anger the mainstream Muslim community, said Ebrahim Moosa, a professor of Islamic studies at Duke University in North Carolina.

Defense officials said the administration reached out to one other country to take the body for burial, but the country refused. Brennan said appealing to other countries would have exceeded the time frame Islamic custom requires, of burial within 24 hours of death.

And yet apparently some still weren't satisfied.

But some Islamic scholars and clerics were divided Monday over whether the sea burial was appropriate or an insult to Muslims. Several said bin Laden should have been buried on land in a simple grave. The body was washed in accordance with Islamic custom, placed in a white sheet, then put inside a weighted bag.

With only a small group of witnesses, a military officer read prepared religious remarks, which were translated into Arabic by a "native speaker," the official said. The body was placed on a board, tipped up and then "eased into the sea" from the carrier's lowest deck, the official said.

So here's what I don't get - if you've invested as much blood and treasure as the US has to track this guy down and then double tap him in the head, why on earth would you bother to cater to Muslim sensibilities? 

I don't  know, for me it's kind of a WTF moment ... at best, Bin Laden was a criminal the leader of a terrorist group bent on destroying "the West", at worst, he was ... words I choose not to use on my blog but you get the point, I'm sure.  You've just "invaded" his "home" and shot him in the face ... and now, you're concerned that his customs and traditions be followed?  Lest someome be offended?

Nope, no disconnect there.  None at all. 

I mean, if you capture and kill a nefarious criminal, a serial killer, who happens to be white, who shares my culture and (in name at least) my religious beliefs, I really can't see myself getting all that worked up about how his body is disposed of.  In fact, I might just have a few suggestions of my own ...

Does anyone still think this dude is actually going to anyone's version of heaven?  And, if they still do, given everything he's known to have done, why should we care what they think?  Wouldn't they have to be just as crazy evil as he was?

And if we're that concerned about offending people of that ilk, then why even bother to hunt Bin Laden down and kill him in the first place?  Don't you think those kind of people might just find those acts alone rather offensive?

* As an aside, I note there are a fair bit of conspiracy theories floating around out there about Bin Laden's death (or lack thereof).  That kind of surprised me until I stopped to think about it - which is when I realized it shouldn't surprise me at all.

I really tend not to a conspiracy theory sort of person in any way, shape or form but I must say some of their arguments do make a certain amount of sense.  I'm not suggesting for one monent that I'm on side with them, just that they're interesting.  Worthy of their own blog post, perhaps.  Not that I'm suggesting for one moment that they will actually get one, just that they might be worthy of one.  And such is life. Or death. Some days, we're not quite sure which.

'Good For What Ails Us'

Everybody seems to know exactly how to fix health care in this country.

There appears to be two camps when it comes to the issue of how to "fix" health care in this country - the first camp seeming to believe that the only thing to do is turn our entire health care system (or at least a large portion of it) over to the private sector while the second camp seem to think that the federal government just needs to keep turning more money earmarked for health care over to the provinces.  Ask either group and you will likely hear the same thing, their solution is just the ticket, the way to solve all our problems.

Which is why I was so smitten taken with this opinion piece in Wednesday's Chronicle Herald.  

Although I must confess that I do have to question the accuracy of some of Professor Ghose's assertions (particularly since he offers no references to back up his "facts") such as, for example, his statements that our health system is the second most expensive of the 28 OECD countries [when even the right wing Fraser Institute's data would place Canada in the number six position], that the cost of prescription drugs is increasing at a rate of 10% to 15% per year [whereas this 2008 report places the rate of increase in prescription drug costs between 1998 and 2007 at 5.1% and the Fraser Institute would have us believe that after adjusting for inflation, prices for existing patented medicines have actually decreased in real terms in 19 of the last 22 years] and that the price of generic drugs in Canada is among the highest in OECD countries and is still rising [although Professor Ghose notes Nova Scotia's and Ontario's moves to cap the cost of generic drugs, he fails to mention that both British Columbia and Saskatchewan have already gone that route].

But let's not quibble and instead take a look at Professor Ghose's thoughts on how to control what he sees as the three fastest-growing items in Canada's health care budget; namely, prescription drugs, the compensation of doctors and CEOs and the funding of hospitals.

With regard to prescription drugs, Ghose's solution is a universal-access national pharmacare program that would cover only inexpensive but potent generic drugs, secure the best prices by bulk purchasing, stop payback practices that jack up prices, curtail inappropriate and over-prescription and monitor drug activity to weed out ineffective and harmful drugs.

Professor Ghose would also eliminate our standard "fee for service" method of compensating doctors, which tends to encourage seeing more patients by spending less time with them (I think many of us can attest to the truth of that statement). Instead he proposes a rationalized salary system based on performance and productivity to cut cost and improve care. He also suggests linking hospital CEO compensation to performance criteria (what a concept!), with changes in compensation requiring justification and online posting (public accountability ... say it isn't so!).

Last, but certainly not least, Professor Ghose notes the cost of delivering primary health care via ERs and tertiary care hospitals and proposes that instead it be delivered through primary care centres, working 24/7.  Such centres should also be facilities for preventative medicine, provide immunizations and actively promote health and healthy lifestyles and would be staffed by nurses and paramedics outside of office hours. [Although he doesn't specifically state it, I assume a doctor would be on call during these times.] 

His plan would also change how hospitals are funded - changing the current lump-sum funding to a method that would take into account the number of patients treated, treatment outcomes and compliance with benchmarks for improving care. Tertiary care hospitals would deliver centralized and disease-based care following the comprehensive cancer care model. 

I don't know about you but, in general, I like the way this man thinks.

As just one example, Canada has desperately needed a national pharmacare system for a very long time.  And for just how long have they been promising us that?

And the rest of it? Sounds good to me, too. 

I'm with the good doctors on this one -

"The idea that we would just put more money into the same health-care system that we have now, without stopping for a minute to consider how we could or should improve it, and what kind of big changes we could make with that money, I think is a missed opportunity," he said.

. . .

A health-care agency to provide strong oversight and long-term planning, well beyond the current four-year election cycle, would go a long way to strengthen the administration of the system, he said.

Happy Easter Everyone

All right.  I've been giving this a lot of thought.  

You know how some people appear to be offended by Christmas meaning we're not allowed to celebrate or wish others a Merry Christmas anymore?  How we had to start calling it something else?

So I was thinking, what if some people are offended by Easter too?

I mean, really.  Think about it. I don't know about you but I really don't want to hurt anybody's feelings. Because that just wouldn't be right.

So here's the plan.

We will no longer call the Easter Bunny the Easter Bunny. 

That might just be offensive to some.  Nope, from hereinafter he shall be known as the Furry Long Floppy-Eeared Burrowing Rodent Who Appears Once a Year Bearing Chocolate Treats.

And whatever you do, please don't with anyone Happy Easter!

It's Happy Totally Non-Religious Colourful Candy  Festival Holiday.

To you and yours.

*  Borrowed (and shamelessly mutilated) from the Magic 94.9 Morning Show.

Too Close To Home

Are you a reader?  I am.

And every once in a while (okay, in a very long while) a book will jump up and grab me by the throat.  Or, perhaps more accurately, the gut. 

I read a lot, good books, so-so books, really good books.   But those rare ones that really grab me - they hang on, they hurt and they tend not to want to let go.

It's been awhile since I've experienced that, though. And, the last time it happened, I ended up in The Deep End.

Having just come off my second P.T. Deuterman book (damm, that man can write!), I thought I might be in the mood for something a little different.  I wasn't quite sure what though. 

I am really into audiobooks as of late and if I am going to spend a credit on a book, I tend to make sure it's a lengthy one.  None of those abridged versions for me ... who the hell even decides what stays in and what goes out?

So I'm not sure why I purchased Still Alice.  Not sure exactly when either.  But the strange thing is it's a short book.  Only seven hours.  Ever hear of small but mighty?

Yeah, about that.

I identified with this book on so many levels and alternated between laughing and crying my way through it - yes, even once, at the same time.  Then again, that is one of my sayings - Some say that if you can either laugh or cry, you might as well laugh.  Me?  I prefer to do both at once.

Alice just turned 50.  For 25 years she has been a psychology professor at Harvard University. [Park the car in Harvard yard - sorry, side joke for any lost Bostonians in our midst.] 

Happily married to a biology prof at Harvard.  Three young adult children - all successful professionals ... okay, with the exception of her youngest who has deserted the life of academia to take up an acting career. But pretty much a perfect life.

Near the beginning of the story, Alice is diagnosed with Early Onset Alzheimer's Disease.  This is the story of how Alice (and her family) comes to terms (or not) with that diagnosis and the progression of the disease.  Because progress it does.  It's heartbreaking in many places.   And equally humorous in others.

But I found myself identifying with the book Alice on two different levels.  It's been almost 2.5 years since my Mom passed away.  The last few years of her life were marred with dementia along with her other medical issues.  It wasn't Alzheimer's but, really, it was close enough. 

Which is why, in so many places, the story grabbed hold of my stomach and twisted.  Hard.  Although not told in the first person, the book paints the story from Alice's point of view.  I was familiar enough with the care giving other side - was this really what it was like from Mom's eyes?

Surprisingly (or not), I also found myself identifying with the story in other way.  Being a Harvard psychology professor, specializing in the cognition of linguistics, and a respected highly sought-after guest lecturer around the world, we might presume that Alice is just a wee bit on the intelligent side.  A hell of a lot smarter than me, that's for sure.  And yet I could identify with being proud and confident of that academic side, of defining yourself, at least somewhat, by your work.  You can imagine how devestating it was for Alice.

And although I am not too worried about dementia, personally, early onset or otherwise (although the book did make me ponder the fact that both my mother and grandmother experienced dementia to some degree before their deaths), I can identify with the concept of a hidden disability. A completely uncontrollable,  unpredictable enemy that can throw your life into a tailspin without a moment's notice.  One that (fortunately only very occasionally for me) can rob you of your ability to find the words you need and/or the ability to process thoughts at the level and speed you're accustomed to.  

MS isn't Alzheimer's, thank God. 

And yet, as I have recently discoverd, it can affect a person cognitively, as well as phsyically.  Luckily for me, on those rare occasions when it has, it would seem that others don't notice.  But I certainly do. 

Not only do I find it frustrating and irritating, but it's also very scary.  For the simple reason that, I suppose much like Alice, I tend to define myself, at least in part, by my 'book smarts'.  And if I'm trying to work my way through a research problem or, worse yet, talk to a client and my mind can't clear out the fuzz or find the words needed to express what I need to say ... yeah, let's just say it's not so good.

There's about 45 minutes left in my audiobook.  Which means, I suppose, that there are about 45 mintues left in Alice's life.  Alzheimer's being a progressive, debilitating, ultimately fatal disease. 

I don't want to read hear any more.  But I know the minute I walk away from this computer, I will finish the book.  I have to.  It's one of the best, most awful books I've read in a long time.

Better Late Purple Than Never

Some might say Purple Day 2011 has already faded into the sands of time. I, however, beg to differ.  After all, as long  the EANS will be the beneficiary of the upcoming Lions Breakfast this Saturday, courtesy of Purple Day, I say it's still fair game.  Which is a good thing, considering I haven't had an opportunity to do any Purple posting until now.

So. Purple Day. 2011.

It having been a bit of a crazy few months in the Free Falling world, we didn't manage to paint our little corner of the world quite as purple as we did last year.  But we still made a respectable showing, I believe.

Horton High School once again took up the cause, with the Blue Jay (this year, with the help of the Kit Kat)  and her classmates again selling purple cupcakes, handing out information and taking donations.  She also had the chance to make a school-wide announcement and explain the purpose of Purple Day before the big day, which was nice.  And it appeared that the whole school pretty much really got into the spirit, with Purple Day posters lining the walls and a sizable portion of the student body decked out in their finest purple gear.

We hit the local Mall again this year, actually, we spent all day Saturday as a family affair at the Mall, where we once again sold bracelets and purple cupcakes, handed out information, pins and ribbons and took donations.  Mucho donations.

Well mucho, considering I have never approached our Mall adventures with the intent of them being fundraisers; their primary purpose is to educate people and get a conversation going.  So it was very gratifying to see now only how many donations we got (and how many $20 donations, at that!) but also how many more people were aware of Purple Day this year than last.  The word is clearly getting out there.

Our family has struggled through a long and often painful journey with epilepsy.  Not as long, not as painful as that some families have and will continue to go through but certainly longer and more heartbreaking than any child or anyone who loves a child should have to face.  And no matter what the future brings for the Blue Jay, I will always be eternally grateful for the past several years of relative peace.  The Blue Jay's life is still not easy (and likely never will be) but things are so much easier for her (and, thus, all of us) when the ugly seizure monsters are held at bay.

And yet, really, I think it's the very fact that the Blue Jay's seizures are so well-controlled at the moment that motivates me to be so involved with Purple Day.  True enough, were it otherwise, I would no doubt be equally but differently motivated to take up the cause, both on her behalf and for so many others.  But for now, it's the fact that we have it so much better than so many others, that we have found, even if turns out to be only temporarily, our magic panacea for her seizures that makes me appreciate how lucky we are and how wrong it is that others out there are still in the position we once were.

I suppose we will always be a Purple family.  Actually, perhaps more accurately, I truly hope that we will always be a Purple family.   There are many, many "good causes" in the world and no one person can take them all on.  But person by person, family by family, we all can make that extra effort to support and promote at least one. 

Epilepsy has touched our family deeply and will always leave a scar.  But I believe it has also left us with something else, something positive and good and pure - the requisite empathy that moves compels us to step up and contribute our small piece to the far larger effort needed to help others who continue to fight a daily battle, not only with this often devestating neurlogical disorder, but with the equally, if not sometimes more damaging, effects of public misconception and the resulting social stigma.

So what cause is personal and near and dear to your heart?  And, more importantly, what are you doing to help make life better for those who live it?