SURVEY SAYS...

"Our lives begin to end 

the day we become silent about things that matter."  

                                                -Martin Luther King, Jr.

several weeks ago (week of oct 19) there was a media blitz about lyme here in BC. information came to light that proved the BC Center for Disease Control (BCCDC) has been suppressing the actual number cases of lyme disease in our province. the information stems from a survey that the BCCDC conducted in 2007. it was a survey about lyme disease. the results?  BC physicians had diagnosed 221 cases of LD in 2007. publicly, the BCCDC reported that there had only been 13 cases that year.

explosive information.
the survey also showed that only 60% of BC physicians even knew that LD was a reportable disease.
again. explosive information.

we've known that the BCCDC was suppressing this information. members of canlyme have been fighting to bring it out in the "lyme light" for a long time. the BCCDC claims that these results were made public and were readily available. yet, they denied the multiple public requests for the results. in fact, they didn't release them until the request was made under the Freedom of Information Act (FOI). and even then, it took them 9 months before they finally coughed it up.

when the story broke in the media in october, we were hopeful that it would force the BCCDC to acknowledge their wrong doing. or so the irrepressible optimist in me thought. the one that believes and hopes that folks will own up to wrongdoing. how can they not? with the proof right there in black and white. in a perfect world, that would happen. then again, in a perfect world, lyme wouldn't exist. neither would lying. cheating. outright deceit. in a perfect world, integrity, truth and honesty would be upheld by everyone - including those in power. 

obviously, we don't live in a perfect world. 
and moral conscious is ignored when it is confronted with the (inconvenient) truth.

unfortunately, CBC, the media outlet, that broke the story didn't hold the BCCDC accountable for their obvious breach of public trust. somehow they managed to weasel their way out of it. i don't know how. the explanations given were so contradictory and their excuses were nonsensical. 
it would be (almost) laughable... 
if this disease wasn't so radically life altering 
and 
if our blood was not (literally) in and on their hands.

the day this information was released to the media, i made sure to forward this on to the reporter at the Richmond News. the same one who had covered our story back in may. back then, he (and the paper) did a 3 part series on our family and lyme.

SMALL BACK TRACK INTO THE NOT SO DISTANT PAST HERE:

i'm not sure if i actually posted them or not so here are the links to them.

ARTICLE #1
Family always looks on bright side of life

ARTICLE #2

1,001 Ways to wish get well soon

ARTICLE #3
I can't believe I'm posting a link to this crap article :)

the BCCDC's response (in the 3rd article) to our story was appalling. i was furious that their spokeswoman would make it personal by attacking us and  our lyme literate doctors. the reporter ended up hearing through the grapevine that i was super upset and contacted me. this 3rd article was supposed be the final article in the series but he gave me opportunity to respond to the BCCDC.

i responded with a letter and the paper printed it. the following is the link to that letter:

ARTICLE #4

"Placebo Effect" isn't helping us get our life back


POST SCRIPT:
There was huge response to the paper's articles. and they recieved many letters as a result of the articles. they published many of them. you can read them by going to their website home page and entering "lyme disease" into the search engine on their home page.

Richmond News Homepage

OR

This link may take you directly to all lyme articles, i think :)

BACK TO PRESENT DAY:

obviously, that type of longevity in media, in and of itself, is quite remarkable.  so i doubted anything would come of me emailing the reporter this latest information. but i held on to hope and with a click of my mouse forwarded on the media press release to the reporter.
then i held my breath.
and
held my breath
and 
held my breath
and
held my breath
and
then i started having seizures (maybe, i shouldn't have held my breath so long. ha. ha.)
at any rate, with this onslaught of new symptoms intensified our private battle with this horrific disease
it consumed us whole
and
swallowed our ability to give any time or energy, let alone thought, to the public side of this fight
3 long weeks went by
and then,
in the midst of the mayhem, came an email from the reporter
turns out he had been working on the story all this time
and
had been in dialogue with the BCCDC about the survey
and
he wanted my thoughts and reaction to their emailed response
ASAP!
could i call him right away?

i didn't have time
i didn't have the energy
i didn't even have the desire 
i didn't want to deal with it at all



i am so utterly tired of it
all of it
the public and the private battle
i just want it to go away
all of it
and
i didn't want to read through the all too familiar BS of the BCCDC
but
i was grateful for this reporter's continued interest
and
painfully aware, that too many lives have been turned upside down by this dreadful disease
one that it is preventable and curable (in early stages)...
- BUT ONLY if you know about it -
awareness is the key

and, as i see it, speaking out is making a difference
maybe not in the political domain (yet)
but the word is getting out
every article written
every story published
every time the news reports on lyme
it results in public awareness of this disease
and
awareness and knowledge about lyme is saving lives
and
so i opened the email and subjected myself to the BCCDC's BS response
and
it hurt, as i knew it would
it infuriated me, as i knew it would

it deeply grieved me, as i knew it would

how can they keep lying about this?
don't they care that people are LOSING THEIR LIVES as a result?

it cost me to confront it again
but
i did it anyway
and
then i called the reporter
and
i said, "we are in crisis mode right now. i've got 15 minutes to give to this."
and then, in a flurry of emotion,
i blurted out my gut reaction 

here's the thing:
give me a few hours,
and
i can articulate myself decently in written form 
but
i do not think well on the spot

i inarticulately babbled on and on to the reporter for 15 minutes
and
after i hung up, i felt like not only had i failed to speak intelligently, i had not done the story justice
and i really, really, really wanted to sit down and think it all thru 
and THEN email him THAT response
but
i had no time or energy 
and 
i really didn't want to THINK about it
i did not want to dwell on the anger
and
so, with some effort, i let it go
(and the teeniest, tiniest part of me hoped the reporter would let it go too)
but
somehow he made sense of my scattered responses
and
he wrote an incredible article
it made the FRONT PAGE of the newspaper on friday

Disease expert's excuse is "hogwash" 
or
(this is the link to the digital copy of the paper)


i just noticed today that, in addition, to the above front page article, their "editorial opinion" was about this survey too.

Survey on Lyme worrisome


so there you have it - some, ok, a lot, of leisure reading for a sunday afternoon.