The other night Anna and I took our Lyme "kit" (pamphlets, tick tools, and slips of paper with the addresses for our online support group) to yet another local screening of Mr. Wilson's riveting documentary, Under Our Skin. We came to support the folks looking for help and hope. We came to support education and advocacy.
You have heard me talk of the arrogance of an IDSA (Infectious Disease Society of America) fourteen-member panel who deny the scope and devastation of tick-borne infections. If they are one extreme...well...the nurse who gave the "lecture," before screening the film that evening, was the opposite extreme...just as dangerous and damaging as the other, in my opinion. The host of the night was unaware, organising the event in good faith with a medical professional.
We got there early, though some had already gathered and were having informal conversations. I had spoken with the host on the phone and she had asked us to come and speak also. We introduced ourselves around, my senses picking up an attitude from the nurse when we began answering some people's questions and handing-out our supplies. Then the host asked Anna to speak first...and I saw the storm clouds gather on the RN's face.
Less than two minutes into Anna's talk, the nurse told her she'd had enough time...to sit down because it was now her turn to speak. We thought it a little rude...but we were invited guests and she was running the pre-show education. We moved off to stand at the side, neither one of us being able to sit comfortably. One young woman who had been to the Bastyr screening came over to talk quietly to Anna. They were both told (like schoolgirls) to move away because they were making "too much noise," though I couldn't hear their conversation from three feet away. Then the nurse's lecture began.
She began with paranoia, serving fear as an appetizer...and false facts as a main course. You want to talk storm clouds? Mine were roiling in from the minute she opened with the conspiracy theory...the government intentionally releasing pathogens to do their own people in. She stoked the fear with authority. I wondered if she had even watched the film when she declared that, "Lyme is definitely transmitted sexually," when the documentary states that has yet to be proved. She went on to tell us about a lab tech who contracted Lyme when a rat peed in a small cut on his hand. Now I was fuming...and noticing more people leaving their chairs.
At this point I took our host aside and began to tell her that this woman was doing a disservice...and, point-by-point, showed her where. Again I will say, this extreme is as bad as the other. It makes the Lyme community (fighting for their lives) look like the paranoid malingerers the IDSA panel would have you believe. It makes the folks who come looking for validation, help and hope...terrified! They were leaving their chairs to go towards the hope that my daughter spoke about, before she was stopped for this one-whacked-woman show. It was a show that went on for over forty minutes, the film seemingly forgotten.
I saw my daughter tiring and, truthfully, had we stayed any longer I would have lost it and told this woman exactly what I thought she was full of...and it wasn't information. We had given out the pamphlets, the tick tools and the slips of paper with the address of the online support group for Washington. We were done and leaving. That address?
http://health.groups.yahoo.com/group/WALDUC-Support/
http://health.groups.yahoo.com/group/WALDUC-Caregivers/
Now, let me leave you with the positive. We talked and planned all the way home. Since Anna's interviews (paper and radio) we have been contacted by many in this area suffering from Lyme and co-infections. We're pleased to announce the formation of Kitsap Lyme, a face-to-face support group. Meetings will be held the first Saturday of every month, starting April 4th., from 3pm to 5pm, at the Key Center Library. Families dealing with, or suspecting, tick-borne infections are welcome. Together we will deal with the truth. Together we will fight the good fight.
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6 comments:
I am sorry that you ran into one of the paranoid fring and a little surprised that it's someone so well educated. If we suspend our disbelief momentarily and assume that Lyme is a government conspiracy, as a nurse you would expect her to be interested in doing the right thing for patients instead of being on a witch hunt to blame the government for Lyme. Obviously her agendas was not helping patients.
Congratulations on making limeaide (so to speak) out of the situation and launching your own group where people can get the straight skinny. Keep posting about Lyme and what your new group is doing. You never know when someone new to the Neighborhood or unLyme educated will stop by here and see what you're doing.
I hope that the guests there had the opportunity to peruse YOUR information and pursue it online after the "presentation."
Wow... I did not know that cloud cuckoo land was so big... thanks Lorraine and Anna for being truth tellers...
Joseph
It's my belief that each and every time you and your colleagues go to work to spread the word about Lyme disease the good space your are all creating out there gets bigger even if it doesn't appear that way at the time.
Because of your work to date, there are people who now know that they aren't alone, there are supportive networks and despite the sorry state of affairs (as you illustrated so clearly) in some quarters of the universe that "territory" is being claimed every day and hope is still alive and well.
Hope is definitely the way we want to approach our advocacy. We nearly lost ours, before Anna began treatment.
It's a known fact that there are labs working with pathogens (like Plum Island) but the bottom line for me is that conspiracy theories drain your energy from the real fight...and always get blown out of proportion so that the energy drain is huge.
A bacteria in your brain can do a lot of psychological damage and it's irresponsible for a medical pro. to greet these folks, when they are trying to search for answers, with something so inflammatory.
Thank you all so much for your support. It's incredibly heartening for us to be able to reach into the community and find others who were as low on hope as we were. You wouldn't believe the celebrations we have when we can get patients in the earlier stages the information that will save them from the tertiary stage.
My eyes get so shiny when my daughter is told that the article telling her story, so thoughtfully done by Colleen Slater of the Key Pen News, saved their lives.
Great news out of Connecticut yesterday! It is a state endemic for Lyme...that gave the disease its name...but it's also the centre for both the IDSA headquarters and major insurance companies. Yesterday a bill passed in their House that validates chronic Lyme and the ILADS protocol of long-term antibiotic use for the condition. If it passes the Senate vote, this would give patients the choice...informed consent. New York and California already have the law passed. This is what we need. The IDSA is welcome to its opinion, but patients deserve options.
One step, one state at a time.
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