Lyme Time with Paula Jackson Jones

Where You Stand Depends on Where You Sit

Posted:  Tuesday, March 6, 2018 - 8:00am

I love advocacy work because I love solving problems and helping others. Advocacy work is not easy. It’s long and enduring, tedious at times, frustrating as hell and requires thick skin. You learn not to take things personally and that failure is part of the process. But so is success and seeing the fruits of your labor being harvested is the ultimate goal.

Today, I want to talk about change. This is probably the most talked about topic in the Lyme community. Even edging forward at a snail’s pace, we celebrate change. I have people tell me all the time that nothing is ever going to change and that opens the door for me to talk about how many more doctors are now trained to recognize, diagnose and treat Lyme and tick-borne disease than ever before. I get to share how laboratories everywhere have taken up the challenge to produce a better, more reliable tick-borne disease test. I share about Lyme laws that are being passed and I get to talk about how readily available resources are such as referrals, support and financial assistant programs are to find now. I’ve only been involved in advocacy since 2014 but I’ve lived immersed in the Lyme community since 2009 ~ and yes ~ I have seen change take place since then. I couldn’t initially from where I was at in 2009 but as time went on, the view changed and so did my mindset.

There’s a saying “Where you stand depends on where you sit” and its been credited to Nelson Mandala. However, upon further digging, I found that the true author was Rufus E. Miles, a federal official in the Eisenhower, Kennedy and Johnson administrations. He coined the phrase when he saw a crisis taking place in the U.S. Congress, a division of sides, and he blamed it on each party thinking that they were “right” and the other side was “wrong” and they were so divided that they were not willing to budge from their views. That’s how Mile’s Law came about. He proposed using a lottery system that alternated the seating of the parties, every other one. This forced the members to get know one another, develop a friendship and have a better understanding of their viewpoint.

This ideology can be said of many things but it’s never truer than when you talk to someone who is directly affected or impacted by something. Their viewpoint can be very different from someone who has not. When you or someone you know is greatly affected by an illness, having a conversation with them you find, it is woven into every thread of their life. It impacts their finances, their family life, their day to day activity level. They fight for change, they fight for laws to protect and they fight for advancements so that others won’t have to suffer they way they or they family has suffered. These are people in our community who want to make a difference in the lives of others before its too late.

I travel all around the state and give educational and prevention talks. I’ve seen the media coverage and I write weekly columns and I am still approach by people who are not protecting themselves, even after they know what I and others have been through.

So how much something directly affects you or your family will determine the action or opinion that you will have on it. If you’re not directly impacted, then you might be more passive about it until, oh say, you are bitten by a tick and contract a tick-borne disease. In the support groups, I hear this all the time. “Why didn’t I just wear repellent?” “Why didn’t I treat my clothing?” “Why didn’t I do more to protect my dog” ~ sobbed a man who recently lost his pet to a tick-borne disease. My heart breaks with each story but I know, that I too, once had a very passive opinion about ticks and the diseases that they carry. That was until I got bit and misdiagnosed over and over again. I suffered terribly, my family suffered. My disease affected everything and everyone. I didn’t ask for it and neither did they. But what I regret the most is that it could have been prevented. I could have done more. I could have taken it more seriously.

Rufus Miles started something, bringing two opposing sides to come together, get to know each other, try to see things from the other’s viewpoint in hopes of making better educated change. Each day, that is what I attempt to do. Whether it’s at a patient level or talking with a medical provider. Sharing educates people, it gives them insight into something that they didn’t know or perhaps have never experienced. It gives them a protective front seat to what could happen if change doesn’t take place.

Final thought: Prevention!

Dig it out or go buy it but wear it every day and treat your clothing, protect your pets, your home and yard. When its too late, it’s too late but if you’re reading this and you have not had a tick encounter yet or contracted a tick-borne disease ~ it is not too late. The temps are warming up and the ticks are active. Be pro-active, not a statistic and protect yourself, your family and your pets.

Paula is the president of the MLDSE, the Maine-partner of the national Lyme Disease Association, member of Maine’s CDC Vector-borne Workgroup, active in Maine’s Lyme legislation and a member the federal DHHS Tick-borne Disease Working Group’s Access to Care Services and Patient Support subcommittee. You can reach her at