My personal experience at Mayday and the Worldwide Protests by Lisa Hilton

 I am going to ask each of you that attended to write a piece on how going to any of the Lyme events this year has affected you. Did it help empower you? Did it introduce you to others that were in your same circumstances? Did it change your views about how we need to move forward with this illness? Share your experiences and ideas on how activism and Lyme awareness events help pave the way for hope in the future for Lyme patients.

Here’s my story.

The Worldwide Lyme Protests
How did I get involved?
I was very blessed for two years in a row to be the US coordinator for the United States in the Worldwide Lyme Protest. I got to meet so many wonderful courageous warriors from around the world and became really close to some of them. I am not even sure how I got this role but I remember Karen Smith from Australia contacting me and Joan Nielson from Denmark contacting me asking if I’d be a part of the Worldwide Lyme Protest that was starting.

What am I looking for by being involved?
For me, my hopes are for recognition. I am not here to fight for certain treatments, I do believe we should have the right to try different treatments with the help of insurance coverage. But right now, I want Chronic Lyme to be recognized. I want the words “Chronic Lyme disease” to be said without any stigma attached. I want it to be recognized as a global problem and I want it to be known that the IDSA affects how the whole world sees and treats Lyme. I want them to realize their responsibilty globally. I want them to feel the weight of their decisions and to feel the suffering caused by the bad ones they are making. The Worldwide Protests is huge to me, the whole world uniting for a cure. Over 30 countries involved in the last two years. It fills my heart with hope.

Madison Worldwide Lyme Rally
I got the pleasure to work with coordinators Jennifer Christie and Della Haugen. Thank you to Hanna and Matt Hollingsworth and her husband for all their help with sound equipment also! We had about 100 Lyme patients show up at the state capitol on May 17. We had state representative Hebl speak on Lyme legistlation. LLMD, Dr Brown spoke about Lyme and how it is related to autism in children. Many Lyme patients got up and told there stories.

madison

Worldwide Lyme Protest Pictures from the United States
Worldwide Lyme Protest Pictures from across the World
The Mayday Project
I have had the pleasure to work with  Josh Cutler, Allison Hoffmann, Amber Limbaugh, Tracy Will, William Duggan, Bruce Alan Fries, Saby Mo and Melissa Ann on the Mayday Project. These are people who genuinely truly care about the future of Lyme patients. They selfishly work, endlessly work, through sickness, to change things for those who suffer from Lyme. I saw people go through bedridden periods… yet still sit at their computer or on the phone arranging for permits, helping set up hotels, do fundraising for the event,  doing teleconference calls, writing long articles on the facts and research about Lyme disease, fact checking, press releases,  setting up carpools and hotel discounts to help patients get to this event,  reaching out to media, doing interviews all while having panic attacks, bad Lyme symptoms, taking care of their own families,  and dealing with the stresses of everyday life. They have asked for nothing in return other then to offer Lyme patients hope.

This protest was just amazing. I don’t even know if there are words for it. I have been to lots of Lyme protest but never saw the results that this year’s Mayday event had. The media got involved, different news stations showing up throughout the day. The IDSA first rejecting talking to us, and finally giving in to let Josh Cutler in twice and to hear Allison Hoffmann-Caruana’s story about her and her children.

The feeling of this event was amazing. I feel like it was a step in the change. I felt like this was the moment the IDSA realized we are not going away. That we will be in their face until they admit the truth and start recognizing and research Chronic Lyme disease.

lyme flash death
NBC reporter filming the Flash Death Mob Scene

 

Fox News Photographer
Fox News Photographer
Josh Cutler getting interviewed by NBC about why we are protesting outside the IDSA headquarters.
Josh Cutler getting interviewed by NBC about why we are protesting outside the IDSA headquarters.
Lyme patients gathered in front of the IDSA headquarters.
Lyme patients gathered in front of the IDSA headquarters.
Lyme patients start gathering bright and early Thursday morning demanding that Chronic Lyme be recognized.
Lyme patients start gathering bright and early Thursday morning demanding that Chronic Lyme be recognized.

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Lyme patients protesting at the IDSA headquarters in Arlington Va on May 22 & 23, 2014.
Lyme patients protesting at the IDSA headquarters in Arlington Va on May 22 & 23, 2014.

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Lyme quilt made by Nancie Brengle.
Lyme quilt made by Nancie Brengle.

ignoring lyme disease

Lyme patients standing in front of the IDSA headquarters asking that Lyme disease be recognized.
Lyme patients standing in front of the IDSA headquarters asking that Lyme disease be recognized.

idsa guildelinesbrenna and nancielyme patlymelyme patient

ryan

chris and jodi

lyme pguidelinesidsa protester

jenny and juleswhen i dofanta

 

Lyme patients all laid down on the ground to do a flash mob death scene.
Lyme patients all laid down on the ground to do a flash mob death scene.

 

flash death scenedeath scene at lyme protest

 

 

 

 

 

 

flash mob sceneflash mob lyme death scene

flash mob

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lyme idsa protest

 

lyme protest 1

 

lyme patient on ground

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