October 9, 2013


for the past two weeks, i've been frenetically emailing the press release for (c'mon everyone, say it with me now) Ticked Off: The Mystery of Lyme Disease. i've also done some good old fashioned door knocking and pounding the pavement personally delivering the press release to both neighbors and various businesses in our city. 

and i am not alone in my quest to reach the masses. 

i have received multiple requests each day for the PDF version. Thank you to each of you who have requested one and are helping to spread awareness. there have been daily updates from other lyme patients who are extending the news far and wide. many of them make my efforts look pitiful by comparison. 

so hat's off to all of you who are quietly going about spreading awareness behind the scenes! i know many of you are doing so at great physical and emotional cost - sharing your story time and time again is hard and draining and more often than not i suspect many of you are exerting and giving every last bit of your precious energy in order to do so. 

keeping busy with the distribution of the press release has been a good distraction - but underneath it all, behind the scenes, i am anxious. worried. scared. my brain is running a million miles a minute on a closed circuit loop...i suspect if you look close enough you may actually see the light from a spark or two erupt from my ears. my gut is tautly wound. it's hard to swallow around the tightness in my throat.

we shared our painful story with a group of individuals we didn't know and then had to trust them to put that out into the national (and international) media...and now we are counting down the hours until we all see how it will play out...
(and i've been running around like a wild banshee trying to get more people to watch. ask me how that makes sense!)

of course, it is natural to worry about how our own personal story will be told and perceived but this is about so. much. more. than us.
there is just so much riding on this. so. very. much. 

and now the hours are winding down.

and there is not much more that can be done. what's done is done - what's not done...well, there is nothing that can be done about that now. it's kind of like the feeling you have when the final store closes on christmas eve and you still have one more thing on your list. it's a sort of odd sense of regret and relief. like, how it's a bummer you didn't get that last little gift but you are glad the agony of fighting the crowds in the mall is over. 

which reminds me, the crew filmed us in the dying days of november and into the dawning of december. traditionally, i (generally) have the halls fully decked and christmas tree up by the third week in november. since they were spending 2 days filming and interviewing us in our home, i had to delay decorating. 

on the final day of filming, avery suddenly turned to the crew and said, 

"ok are you guys done yet? could you get moving so we can get on with things here. we couldn't decorate our house for christmas because of you. you know what, you guys are like the crew that stole christmas!"

Avery & the crew who stole Christmas
so, i'm kicking myself now that the crew that stole christmas never officially interviewed that girl. i don't know why. it just didn't happen. it was crazy and busy and stressful and somehow she never did a sit down with them. none of us realized that until after they had left.

i really do regret she never got a chance to speak her mind.
my girl has been known to say some pretty profoundly insightful things.
she also has her father's humor.
maybe it's for the the best...
you never know with that girl.

i went thru an enormous roller coaster of emotions during the taping - and it stayed with me for several weeks afterwards.

i am very good at thinking i didn't do something good enough.

i thought of the 101 things i could have said. 
i thought of 101 i should have said. 
i thought of the 101 things that were more important to say than the 101 things i chose to ramble on about.

i thought about why i said some of the things i said and how i can be way too chatty - especially in awkward silence sort of situations
("this is our war book" is a perfect example of that- and lordy, that is in the trailer)
and the worst?
i felt like i had had my best conversations with the director off camera.

but that is just me being me.

i had a friend call yesterday. she's done something just like this before and so she knows what really goes on behind the scenes.
she gets how i'm feeling and i was glad to know that.
and we laughed about it.
we laughed about how she cried in her interview and how horrified she was
we laughed that i think that it is terrible that i didn't shed one tear during mine.

tonite as i watch the clock wind down, i'm holding on tightly to words of encouragement another friend sent me....

"i hope you know that either way - even if you aren't entirely happy with how everything is presented, not only was it a courageous thing to do but the right thing to do. it gives the opportunity for many to learn and protect themselves or get the help they need because they didn't know what was wrong...and those that are skeptical? well, that's their own journey."

as i was sitting here waiting to for the final pic to upload, a thought just came to mind - about how God is always working behind the scenes, bringing about His purpose in His time - and it's hard to get that, grasp that, believe that especially with the stuff of life that just doesn't make any sense at all but i know that it is true. 

sometimes, we can clearly see His hand in a situation but more often than not, we see Him in retrospect. we look back and say, "okay, God, i see what you were doing there." but just because we didn't see it at the time it was happening doesn't change the fact that He was there, the whole time, working behind the scenes. i'm good with that. i can rest in that.

October 8, 2013

EXPOSED - The filming of Ticked Off

so the airing of Ticked Off: They Mystery of Lyme Disease is a mere 2 days away now. 

the day before yesterday, i stumbled upon an archived journal entry about our first day of filming...it was a fully written entry - the pictures that went with the story were even uploaded but i never published it. 

because by the end of that first day of filming, i was raw. 

the film crew were wonderful. they were respectful. they didn't overly pry. and we even shared a good many laughs. but every time you tell your story, a part of you re-lives the pain, the suffering, the abandonment, the rejection, the horror
that is hard.
really, really hard. 

i felt exposed. i felt vulnerable. and back then, i guess i just didn't have the gumption to make that all public.

and ok, honest to goodness, i will be completely transparent here - posting the story meant revealing i had (have) superficial worries about my hair and certain camera angles...and i have to admit, i was embarrassed to admit that.

i'm putting it out there now.
why not?
some of it is funny. at least i think so. some of it made me laugh when i read it.

november 29,2012 was the first day of what ended up being three days of filming.

just before we left for our appointments with DR H, the film crew came to our hotel.

the reason they came to the hotel was two-fold.
one to have a bit of a meet and greet.
the other to film us getting ready to drive to DR H's office. 
it was awkward. quiet. weird. unnerving.
suppose those feelings are to be expected when total strangers walk into your space, camera in tow and begin to capture your every move.

The Crew from Merit Motion Pictures

what does one do when a film crew is with you?
why, of course, the most important thing to do is to act natural...which naturally feels like about the most unnatural thing to do.

do you look at the camera? or not? do we talk? do we not? and if so, what on earth do we talk about? 
the weather? 
ha ha.
for the most part, we all sat around in awkward silence.
the kids quietly played minecraft on the laptop.
the camera man zoomed in on them.
initially, they sat there stoically solemn.
then suddenly, they evolved into animated, amped up, hyperactive goofballs.
parker moved around the most he has in about 3 months. so much for representing the worst of what this disease can do. nothing like a little nervous energy to get one moving. 

natural? not remotely.
finally, the time to leave was upon us.
however, i needed to take my next dose of meds first.
i walked into our hotel kitchen.
camera guy follows.
sound guy too.
they are behind me, i thought.
that means one thing.
a butt shot. any woman's worst nightmare.

i was still pre-occupied with that thought as i nervously poured a glass of water and retrieved my pills
suddenly a boom mike is dangling above my head.
self consciously i gulped down a handful of pills.
move on to mixing the homeopathic tinctures i'm on.
those were the longest 15 drops i've dispensed in my life.

finally, it was time to leave for DR Hs.

avery went to put on her shoes. 
the camera guy followed her, still filming.

she looked up at the camera.
cue eye roll.
cue melodramatic forehead slap.
cue exasperated sigh followed by,

"you're going to film me tying my shoes? are you serious? really? how is that newsworthy?" 

they then filmed us leaving the hotel. 
wanted to even capture us walking out of the door of our hotel room and getting into our vehicle.
just act natural. umm. yeah. okay.
it was the most awkward exit of our lives.
we marched out stiff as soldiers on parade.
hup, two, three, four, down the side walk towards the parking lot we woodenly marched.
kids in front. graham and i tailing behind.
camera filming us from behind.
("oh no, please, not another behind shot!" i silently screamed in my head)

at the corner of the hotel, the sidewalk separates into two walkways. we went down one, they whipped down the other, by-passing us so that they could now film our approach to the car. 

do you smile?
look somber?
i'm sure graham and the kids looked like deer caught in headlights
i, on the other hand, was just so grateful to not have a camera focused on my hind quarters, that i'm pretty sure i looked woozy with relief.

graham opened the car door for me.
like i've said, we were behaving in the most unusual manner.
off we zoomed to DR H's office
a 25 minute drive.
black suv in hot pursuit the entire time.
filming from behind
zooming up beside us camera hanging out the window

avery ducked every time they came along side of us.
the rest of us, sat stiffly in the car.
should we talk? 
do we just face forward? 
well, clearly, that would be advisable. 
after all, forward facing whilst operating a vehicle is a smart move.

speaking of forward facing...  
my hair was sprayed so stiff that even when i turned my head to the side, my hair remained forward facing.
no flowing locks here. 
no doubt about it, i had major helmet head going on.

beyond my coif being a fire hazard, i will admit the whole hair thing hit a bit of a frenzied crescendo in the week leading up to this. i should probably back track a bit here.
you may recall i am a newly minted blonde...having made the jump from living as a brunette for nearly a decade.

for the filming i was neither.

i was no longer brunette.
i was not a blonde
i was somewhere in that awkward in between stage.

i had begun the transformation in august 2012 - not knowing that we would be filmed for this only a mere 3 months down the road. 

going from black to blonde proved to be a long, somewhat terrifying process to undergo. it meant enduring the 'awkward day-glo orange' phase. 
naturally, i was in that day-glo phase when the cameras started rolling.

no. it was more like multiple shades of day-glo orange.
it was a virtual psychedelic rainbow of sunset hues.
sunsets are a thing of beauty...but they belong on the horizon not as a face framing halo.

in an effort to keep reflections on this experience authentic, i won't lie - despite the fact that i am a bit ashamed about it... in the week leading up to the filming, i will admit i had some minor major moments of freaking out over my hair.
i spent an inordinate amount of time pre-occupied with it. 
and visited 2 hairdressers. 
much to my relief, the second hairdresser was able to tone it down.

embarrassed to expose that truth...yet, i'm betting some folks are still gaping at the above photo and will understand i had cause for angst... and several rounds of bleach. even my husband suggested i should "do something" with my hair.

DR H looking all spiffy

we finally arrived at DR Hs office.
much to my relief, he was there and fully prepared to appear on camera.
he'd clearly put effort into his appearance. those that know DR H will understand how completely uncharacteristic this is.

his clothes were ironed.
his hair was brushed.
i'd hazard a guess that it had even been recently trimmed.

clearly i'm not the only one who had thought about physical presentation... and he's a man. 
justifying myself here.

in the spirit of keeping it real, i might as well address the issue of clothing. or may i say, the minor wardrobe malfunction i am terrified may have been caught on camera. i must say that i tried on a few outfits before i picked out what i would wear. but in all honesty, i did not give my wardrobe choice a whole lot of thought...after all, the battle with my psychedelic hair color took up most of my energy.

so the clothing choice.
that i may come regret. 
in fact, i already have.

i wore jeans, a cardigan and scarf
pretty basic and neutral attire.

the entire crew piled into DR H's tiny exam room and filmed our appointments. 
DR H. me. parker. graham. and the 4 men tv crew. camera. boom mike.

the room got really warm really fast.

when it came time for my exam, i shed my cardigan and scarf. 
neurological work-ups are a bit of a work out in that they require movement. arms out. arms up. bend this way. bend that way. jump up. squat down. 

i was bending into a squat when it suddenly hit me
my jeans are a wee bit a whole lot lower than my natural waist line
panic washed over me in a nano second.

heaven help me, i think my underpants are showing!

somehow, every unflattering picture i've ever seen printed in grocery store tabloid magazine flashed through my shellacked head. i could barely focus on dr h's directions after that...

i was just thinking the worst was behind me, when DR H proceeded to give my belly a thorough palpitation and extensive exam.
my BARE belly.
i nearly died as the reality of the situation washed over me...there is a massive camera inches away from my gut.

i am an exposed specimen.
(the following day, i made them promise not to use that footage.)

after our appointments, they did a 30 some minute interview with DR H.

i have such gratitude for our doc...his wisdom, his dedication, his (stupid) sense of humor and his willingness to put himself out there. in his profession that is incredibly risky. i have no idea what they asked him. we had to sit in the iv clinic area of the office and were not privy to what was said. darn.

by the end of the day. i was hooped. we had spent just over 5 hours filming. TV stuff aside, it's a long day to begin with. our appointments with DR H are intense and require my full attention. it takes an inordinate amount of energy to remain focused and try to process all the stuff we cover.
add to that, a camera and 4 people shadowing you and it was entirely overwhelming.

once we got back to the hotel the stress of the day hit me. 
and hit me hard. 

panic and anxiety rolled over me and knocked the breath out of me.
my body was buzzing and my head was fuzzy.
my heart skipped beats in my chest
a surreal mirage of the day's events shifted into my mind's eye
they replayed in my head;
a never ending circuit looping thru my bleary mind

what have we gotten ourselves into?
i kept asking myself over and over
i don't want to do this.
it's too much. way too much.

why did we ever agree to do this?
i can't handle this.
i feel so completely exposed. 
i wanted to run and hide. 
i felt myself near the brink of total hysteria.

why did i ever agree to do this?
i threw the covers over my head.
a desperately futile attempt to shut it all out.
the continuous noise in my head just roared on.
i was absolutely reeling.

i felt the weight of the world on my shoulders.

i. feel. exposed. exponentially.

back to the present
so that was how i felt way back in november 2012
i find i am nearing that state of mind again
how i felt then is how i feel today
the thoughts are back
haunting me late into slumberless nights

why did we do this?
because this isn't about us.
it's about so. much. more.
it's about saving lives and fighting for change.

i feel the weight of the world on my shoulders. our story is but a drop in the ocean that is wide and deep and overflowing with the suffering of lyme.

this i know.

we must keep telling our story
every. single. one. of us. 
we must raise our collective voices and tell our stories a thousand and one times over or however long it takes until change occurs.

until canadians can walk into any doctor's office, obtain a clinical diagnosis of lyme and be given adequate antibiotic treatment.

until canadians with chronic lyme are treated with compassion, dignity and respect and prescribed long term antibiotic treatment in their own country.

until there is a cure for chronic lyme.

we must tell our stories
until the truth about lyme prevails
the corruption is exposed

October 3, 2013

OFFICIAL TRAILER OF Ticked Off: The Mystery of Lyme Disease

this morning the official trailer of the documentary Ticked Off: The Mystery of Lyme Disease was released on the Nature of Things website. if you don't blink at all, you may just catch a glimpse of myself, graham, sparky and our doc, DR H....no Harrison tho'. (he's currently sulking in the corner)

i also want to say thank you to those of you who have already responded to this post and/or my email. we've heard it is even beginning to circulate through several school districts in our area. that is so important - as children are at greatest risk of contracting lyme. it is exciting for us to hear how far and wide you are spreading the news! thank you, it means so very, very much to us!

in some of the feedback i've received, two primary questions have been popping up in regards to viewing the documentary. i forwarded on those questions to the producer/publicist and they were quick to respond with some helpful answers! below are the questions which are followed by the answers the producer gave me!

Q1. Is there a way for folks in the USA to watch? 

A1. We don’t have a broadcaster in the USA yet, but hopefully will at some point. In the meantime though they can pre-order dvds by emailing info@meritmotionpictures.com

Q2. Some folks don't have PVRS and are not free to watch on Oct 10 - These folks are wondering if the documentary will be airing on any other already schedule dates/times? 

A2. The show will be able to be viewed on-line within Canada on the Nature Of Things website after show airs

keep spreading the news, friends!

October 2, 2013

TICKED OFF: The Mystery of Lyme Disease

it's official - the goertzen family is coming to CBC TV this fall...in one short week to be exact!

Premieres Thursday, October 10, 2013 at 8PM (8:30PM NT)
on CBC-TVs The Nature of Things

Feel free to email me for PDF version of the press release

last week, it was confirmed by the producer and executive producer of Merit Motion pictures that our family's story will be part of the upcoming documentary about Lyme in Canada. as you may or may not remember, we were filmed for this way back in november 2012. the film crew spent 3 days filming in our home and also filmed us in SF during one of our trips to see DR H. it has also been confirmed that their interview with DR H is in the documentary.

we suspect that our infamous dog, Harrison Phineaus Goertzen, may even be in the documentary. the entire film crew was enamored with him. in fact, the camera man spent a copious amount of time filming (and cuddling) our pooch. he did not cuddle any of us. none of them cuddled us. after all, they are professionals. given that Harrison is the strong, silent type, we're certainly curious to see how much actual air time he'll get.

friends, i am specifically asking for your help to spread the word of this documentary - and i am doing this knowing full well that i had a serious hair disaster 7 days before the filming took place and as a result had the spray-your-hair-into-submission kind of very fried, seriously brassy helmut head for the filming. trust me, there is no ego involved here. this is about saving lives. our family's primary objective in participating in the filming was to help spread awareness and educate the public in the hope that we can prevent other families from experiencing the horror of Chronic Lyme Disease. you can help us meet that objective by spreading the word to your friends and family. 

How is this relevant to your friends and family?

Because Lyme is the fastest spreading infectious disease in North America & the world and anyone, anywhere can contract it.

Please consider this - a few weeks ago, the US Center for Disease Control reported that 300,000 Americans PER YEAR contract Lyme. Canadian Scientists have predicted that 80% of Eastern and Western Canada will be living in areas at risk by 2020.
Sparky and DR H
no, nothing awkward about having your doctor examine you on camera

Still not convinced to ask others to tune in?

Please reconsider! Public awareness and education of this insidious disease is paramount. We believe the information in this documentary will save lives.

Here's a link to view a clip from the documentary. This clip features an interview with Dr Maureen McShane. Dr McShane is a Canadian physician that practices in New York so that she is able to treat Lyme patients. She 'gets' Lyme because she suffers from the disease herself.

i'd really appreciate it if you could help us spread the word. you can email me at sngoertzen@gmail.com to get your own PDF version of the press release... 

Sparky being interviewed 

there are several simple ways that you can help: 

first, post about it on facebook. share a link to this blog post on facebook.

second, email the press release to friends and family

third, print off copies of the release and post it around your neighborhood - eg, library, pet stores, vet office, community centers, health food stores, etc.

fourth, email copies of the press release to your MLA and MP. they need to be made aware that Lyme is a growing national health crisis and a real threat to ALL Canadians. it needs to be on their radar. 

please be sure to tune in or set your PVR to CBC on Thursday, Oct 10 at 8PM!