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?
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.