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.


Anonymous said...

Dear Shannon & your beautiful family,
Your post is so authentic and so heartfelt. i know you really put yourselves out there being filmed for the documentary not knowing what would happen. I am so proud of all of you...yes, you too, harrison:)
One of my favourite quotes came to mind as i finished reading your words:
“A small body of determined spirits fired by an unquenchable faith in their mission can alter the course of history”
You did this so that others might not have to endure the torture your family has experienced at the hands of the ill-informed.
Stand tall knowing you have made a difference.
xxxxxxx chris

Kathy said...

So proud of you guys. It takes a lot of bravery to open up your heart and pain for the world to judge. And... I agree with your friend, whatever happens...happens. I have no doubt (stammering, blabbering, chatter boxing included), you will be brilliant. <3

Thanks for doing what you do. XOXO

MD said...

Hi Shannon,
Thank you so much for your candidness and I really enjoyed watching it. I told all my fam and friends as well. I see Dr. McShane myself and she is just awesome. Seriously, all I remember was that you had great hair! You were a natural on camera and thank you for letting us share your experience.

Anonymous said...

Dear Shannon,
You and your family were one of the huge highlights of the show! Thank you SO much for opening up about your experience to inform others and prevent more suffering. I told as many people as I could to watch it. You could watch it online afterwards too, you know. You are such an encouragement and incredible inspiration.
Stephanie in Victoria

Joanne said...

Thank you for all your work in awareness of this dreadful disease. I was told of your show by my lyme friend Alison in Edmonton but alas was unable to watch from here in UK so it was good to read your blog.
If any of the show becomes available on U tube perhaps you can post a link so we Lyme patients across the pond can get to see all your work.
Good luck to you and your family and brilliant work Dr H for all his efforts to help us.