Gettysburg, PA – T.O.F.U. Lyme Awareness Day

Gettysburg, PA – T.O.F.U. Lyme Awareness Day

Gettysburg, PA – T.O.F.U. Lyme Awareness Day


This speech is dedicated with love to C.S., 7 weeks from graduation, who has inspired me with her tenacity, positive attitude, and commitment to succeed and live life to the fullest despite all the obstacles thrown in her path.

To: Senator Santorum, Mr. Mayor, other elected officials or their representatives, and especially, the Lyme community

One hundred thirty seven years ago, two conflicting armies met here for a decisive battle considered to be the turning point in the Civil War. Later that same year, Abraham Lincoln dedicated this battlefield to those who sacrificed themselves in that war. That war was about personal freedom.

Today, it is not a coincidence that we have come from across the country and assembled here in Gettysburg. We have fought our own kind of war, many for more than a decade. Like the Civil War, we as a people are divided, state against state, community against community, family member against family member, doctor against doctor. Each carries the banner of righteousness. While the sides battle, the victims drop.

Like those who fought in that other famous war, we are often sick, bedraggled, weary in mind, body and spirit. What ails us is not so much this devastating illness we suffer, but the battle we must wage for our very freedom—a freedom we all thought was won 137 years ago on this very spot.

Sadly, we know that in our Lyme world, freedom is not given to all. Ask the patient seeking a diagnosis. Ask the victim seeking treatment, the doctor seeking to treat, the patient seeking insurance, the worker seeking disability, the child seeking an education. Ask the mother who seeks solace while her child lies in the fetal position. While they seek, academicians dogmatically decree that Lyme is cured in 28 days.

The world has turned a deaf ear to our plight for too long. Like those in the great battle of Gettysburg, we are gathered here today to achieve a turning point in our war. Unlike Abraham Lincoln, we are not here to dedicate this battlefield to those who fought and did not return. Instead, we are here to ensure that those of us who have fought in battle will return— return to work, to school, to family, to life itself.

In your minds you may be asking how is that possible? But in your hearts you know how that is possible. Across this country, indeed, across this world, we are unifying. With that unification, comes strength. Those of us who are not sick must stop and help those who are. Those who are sick must help those who are in greater need. Together, we will use a great weapon—a weapon that has been used throughout history to make the world a better place to live in, a weapon that is so mighty, no one can deny its power. That weapon is TRUTH. The truth is out there.

We are the only ones who can uncover this truth, those of us who have lived in its shadow for so long. We must drag it out of the shadows and into the sunlight for all to see. What is this truth? This truth is that Lyme disease is a serious illness, an illness which can be carried by several types of ticks but is predominantly transmitted by an animal the size of a poppy seed. The infected tick is found in great abundance here in Pennsylvania, a fact that has made PA 3rd in the nation in Lyme cases. That little but mighty animal, the tick, has caused us great harm, but it is an animal with no ability to reason. The infected tick bites us to survive, the bacteria enters us to survive. There is no reasoning there, no malice intended.

Conversely, it has often been said that what separates man from other animals is his ability to reason. Man sees the tick bite, sees the bacteria inside, sees the sick people. Does reasoning man rush to help those infected by these simplistic animals? Does he try to understand that their simplicity belies their complexity? The truth is, many a man imagines himself superior to everything in his environment. He envisions himself a demigod able to control everything within his environment. Instead of help, he provides academic arguments with little basis in fact; he provides vaccines for this non-serious disease, and he provides tests. He also provides, of course, interpretation of the tests. If a patient tests negative for Lyme, obviously he doesn’t have it. If a patient tests positive for Lyme, obviously he doesn’t have it because it’s a false positive. If a patient tests equivocal, order another test and see above.

He rushes to condemn his colleagues who take Lyme seriously. He rushes to ridicule those who remain sick, lest his ego or his money source become deflated. He turns away those whose symptoms remain, pronounces them cured, and rushes to proclaim his 100% cure rate. These are the superior beings, the ones with ability to reason. If this be the actions of the reasoning animal, I’ll take the ticks.

Now it is finally our turn to trumpet the truth about Lyme. We must do this in CT, NY, NJ, RI, DE, MA, OH, MI, CA, Gettysburg, and Siberia. Yes, that little sucker is there too. Place names are not important. An animal without reason doesn’t stop to decide on which side of the Delaware or Atlantic he will chose a victim. For that matter, he does not check the credentials of his victim at all—democrat, republican, male, female, black, white, young, old. It matters not.

So we must not think of ourselves as Pennsylvanians, New Jersyians, Siberians. We must think of ourselves as bearers of truth. We must carry this truth to everyone—to the fathers, the mothers, the teachers, the doctors, the lawyers, the politicians, especially to the politicians.

Some of you think, “we do not need them. They’re not doing a good job. They’re not helping us.” If this is so, we must look to ourselves to see why. Are we responsible for this state of affairs? ? Do we vote? Do we ask questions? Do we make an attempt to understand the issues? Do we keep our officials informed of the issues and how we want them to be addressed? Do not assume that they should know all and understand all. Do all your family and friends who see you on a regular basis really know and understand all your Lyme problems?

Those of you with children will recognize that parents do not always comprehend their children’s needs all the time. Often, hours of dialogue are required. Sometimes, both go away dissatisfied, still not understanding the other. Our relationship with our officials is the same. We must educate them, tell them what is happening to us and our families. Tell them what they can do to help us. If your officials remain unresponsive after you have carried out those steps, then you must take it to the voting booth. When they recognize our power, they will help us.

Fortunately, our officials in NJ and PA have been responsive to our plea for help. Congressman Christopher Smith has written and introduced the Lyme Disease Initiative 1999 in the House, and Senator Santorum in the Senate. The bill will provide $125 million for Lyme disease research. The prioritized goals are a sensitive and specific test, examination of the Centers for Disease Control surveillance criteria for Lyme, physician education, the role of other tick borne diseases, and a reduction of disease in the ten highest states. Monies would go to the CDC, NIH, DoD, DoA, and DoI. You must understand that government money for Lyme has been spent in the past, and without this bill, will continue to be spent without input from the Lyme community. Under this bill, for the first time, the Lyme community will have some influence as to how Lyme money is spent. We can try to get more monies awarded to credible individuals such as Dr. Brian Fallon, Columbia University, who just received a $4.7 million grant from the NIH for a brain imaging treatment study.

This bill was developed over several years. It is not a perfect bill. To help passage, government agencies, as well as Lyme groups including my own, had input into its development. When passed, not only will the bill provide much needed monies, but it also will provide something much more important—a majority of both houses of congress plus the president of the United State of America will have acknowledged the seriousness of this disease, our disease, the disease you are now scorned for having, the one which isolates you as the lepers of the 21st century, Lyme disease.

With this measure, the United States will be leading the way in this worldwide epidemic. It will provide protection for our doctors who will be able to treat in a friendlier climate. It will give us leverage with insurance companies who have denied us coverage. It will encourage other doctors to come out of the shadows and treat. It will force school districts to recognize that the needs of our children are serious, and most importantly, it may save your life or the lives of your family and friends.

As you know, Lyme is not benign. The clock continues ticking without remorse. Many of us have attended funerals for loved ones who have died from this illness. The greatest indignity of them all, perhaps, is suffered by the deceased—“cause of death: Lyme” is often missing from the death certificate. Scorned in life, scorned in death. It is time, my friends, that we stand solid here in Gettysburg and everywhere and shout with one collective voice ENOUGH! Treat our mothers, fathers, sisters, and brothers. Treat our children. Let our doctors treat us not only with antibiotics, but also with dignity. In the end, that may be all we have left.

I can’t leave here today without acknowledging Lovette. Mott and her group. Without their dedication, today would not be reality. Let’s hear a rousing cheer for them and what they have accomplished!

To paraphrase Abraham Lincoln and Lovette: the world will very little note, nor long remember what we say here, but it can never forget what we did here, so Gettysburg, let’s RUMBLE!

Thank you and may you, find health and peace.