In the News:
Memorial Park Project To Honor Victims of Tick-Borne Illnesses
Susan Williams
Public Health Alert
A group of Lyme Disease sufferers all across the United States have taken on a project of untold proportions. Discouraged by widespread ignorance that Lyme Disease and other tick-borne illnesses can be fatal, several LymeNet.org members have united to create the National Lyme Disease Memorial Park Project.
Aware of the conflicts between various Lyme organizations, the group hopes to stay entirely neutral while emphasizing that Lyme and other tick-borne illnesses are truly a national problem. They envision an easily-accessible place where people can gather, with a central facility for meetings, research, and education. The building will be made of recycled materials and be patient-friendly in all aspects. There will be plenty of sheltered areas to stop and rest or contemplate, and some water features. The Park will offer a place not only to grieve, but also to be educated and to come together with others experiencing the same loss.
"Imagine a field of trees - a forest really - that springs up from the heartland, but with a precision in layout and geometry and color that is obviously different from the rest of the land. Obviously planned, and obviously filled with some sort of meaning and purpose that can be understood even by those who have no clue as to what it is all about," describes Melanie Reber, a landscape architect and Lyme patient in California who is heading up the project. "Each tree will have some sort of signage indicating the individual that it represents. Each area underneath each tree will be 'given' to family members who may use it for their own sort of memorial area. This could be as simple as a bench, a bed of flowers, a personal memento, or it could be left pristine."
Reber continued, "As you pause to soak in all that nature has to offer the senses, you realize why you are here, and why this place exists. Each tree has meaning, each tells the story of a life that had meaning, but ended far too soon. Each symbolizes the individual that was only one of the many who succumbed to the fate of associated Tick Borne diseases. As you move down the wide circular pathway from tree to tree, the magnitude of this loss begins to settle in."
It was the loss of 41-year old William Henry "Billy" Boesché of Maryland that sparked the idea. In an earlier discussion with friends, Billy had commented, “I tend to plant trees in honor of those I love that pass away. There's something symbolic to me about trees, whether it be the branches reaching toward heaven, or just the growth year after year - signifying strength throughout all kinds of weather.”
With Billy's death this June, the group decided that the time was long overdue to create a living memorial in honor of those whose life has been taken all too soon by this dreaded illness.
"It is my way of dealing with the fact that the person is gone but their memory will still live on. I also like to know the tree will give pleasure to many, for years to come," reflected Lucy Barnes, a Lyme patient and Director of the Lyme Disease Education and Support Groups of Maryland who is collaborating on the project. "We are having increasing numbers of deaths from Lyme. There is no 'quilt' or memorial way to remember these folks and celebrate their lives. We are hoping maybe we can set up some way to remember Lyme patients after they pass. It will also make people take note of the fact that we are losing folks to this disease that is said to not be serious... and rarely fatal."
"I think some kind of memorial is definitely in order, and trees are the perfect metaphor to represent us," affirmed Paula Halbur, a Registered Nurse and Lyme patient in Iowa whose daughter also has Lyme. "Sadly, this could end up to be a forest."
While the exact location of the Memorial Park is not yet decided, project organizers would like it to be in the heartland of the country, where TBDs are the least understood. This location would be symbolic of all Americans, from north, south, east, and west, coming together at the heart of a difficult issue. The group hopes to set the park within acreage devoid of trees, which would cause the park to visually stand out and symbolize that these diseases happen everywhere and no place is "safe".
Planned facilities include a covered stage, amphitheater, open plaza, comprehensive library, research center, TBD database, giftshop, cafe, and meeting rooms. The Park will have on-going events scheduled such as concerts, conferences, presentations and rallies.Organizers already have the project well underway. In addition to developing a preliminary conceptual design, the group is in the midst of researching appropriate site locations, along with existing memorial proposals, site development issues, and design criteria. Volunteers have been verifying names to add to the growing list of TBD fatalities, which now tops 200. A Board of Directors, consisting entirely of Lyme Disease patients, has been formed and is going through the tedious process of establishing non-profit status.
The Memorial Park has a website at www.LymeMemorial.org to serve as an informational hub. The website will also have memorials online for each person who has passed away, with a short biography and any other information that the patient's family wishes to add.
"It is very difficult work, but so necessary for all of us to make our voices heard, and the voices of the departed counted for," explained Reber. "I know this is sad and sobering, but it is our reality. And until we can show that TBD associated deaths do indeed occur everywhere, we will continue to be dismissed and uncounted as having a serious disease."
"We are also aware of several suicides," Reber stated, "and they, of course, were TBD associated. Those people need a voice too."
Project organizers are asking anyone that has information to please contact them to ensure that no names are missed. "It takes a lot of research to find the families and verify each name. We do not want to include names without a family's permission, but we also don't want to shorten the list just because we can't reach anyone to verify and gain permission. This is a dilemma that we are working on," Reber acknowledged."We want all Lyme patients to feel that this Park belongs to them and their loved ones," Reber emphasized. "This will in no manner be a static environment. It will be full of life- a living memorial."
Some Lyme patients have taken the idea a step further in regards to their own mortality. "I know this is a morbid subject, but I think we need to tell our loved ones that, if we should perish as a result of something related to this disease, we want the obituary to clearly say 'Lyme Disease'," added Jeannine Phillips, a Lyme patient in New Jersey. "It might be going too far to write one or more paragraphs in advance when we are still able, and it might be too difficult. On the other hand, many people do sit down and write what they want their obituary to say."
Anyone interested in working on this project in any capacity may contact the organization at MelanieReber@sbcglobal.net.The organization also appreciates and accepts monetary donations.Courtesy of: Public Health Alert
Heartbreak of Lyme
SunJournal.com
Lewiston, Maine
Saturday, March 24, 2007Thank you for the article "Lost to Lyme" (Sun Journal, March 18). It was one of the most honest and heartbreaking articles yet to fully emphasize the devastation that patients with tick-borne illnesses endure, and how their families and friends suffer, as well.
Some, like Bill Chinnock, simply cannot continue to survive with the desperation that most patients feel while experiencing these diseases.
God bless him, and his family and friends who loved him so much and will undoubtedly miss his presence for a long time to come.Melanie Reber, Redwood City, Calif.
Executive Director, The National Lyme Disease Memorial Park Project
"The most erroneous stories are those we think we know best -- and therefore never scrutinize or question."- Stephen Jay Gould
© 2006 The National Lyme Disease Memorial Park Project
