Lyme Time with Paula Jackson Jones

Point of Light Award Recipient

Wed, 08/21/2019 - 4:00pm

In his 1989 inaugural address, President George H.W. Bush shared his vision of "a thousand points of light" — individuals and organizations across the nation helping others through service. In 1990, he established the Daily Point of Light Award for individuals making a difference. During his administration, President Bush formally recognized more than 1,000 volunteers as “points of light.” He advocated that “points of light” demonstrate how “a neighbor can help a neighbor.”

On Aug 16, 2019, co-founders Paula Jackson Jones and Angèle Rice were honored as joint Points of Light #6,586 for their volunteerism and steadfast community service through their nonprofit, Midcoast Lyme Disease Support & Education.

Read more about their award story interview: Lyme disease volunteer to help others stricken with the epidemic

Their stories of survival are different, but their journeys to wellness, once filled with pain, confusion and frustration, have transformed into clarity and inspiration as Lyme disease survivors Paula Jackson Jones and Angele Rice advocate for others.

Launching Midcoast Lyme Disease Support & Education (MLDSE) in 2014, the two women, both Maine residents, are volunteering to make a difference for those touched by the Lyme disease. An epidemic, hundreds of thousands of Americans possibly contract the often difficult to diagnose disease each year, and Paula and Angele have used education, resources and their personal experiences to help thousands within Maine’s Lyme community.

What inspires you to volunteer?

Paula: When I went into remission, the biggest thing for me was realizing everything I had been through, how lonely I felt and how exhausting it was. I immediately signed up for a Lyme disease 5k, and that’s when I first met Angele in person. I had a very difficult time doing the 5k, I only finished 2nd to last because my dad stayed behind me for the entire race. The photo of my finish in that race reminds me that with the right support, anything is possible. Angele and I have seen first-hand how after struggling, going from doctor to doctor, people are getting better.

Angele: Both my parents taught me about the importance of serving others with whatever natural talents you have. When I was sick, my journey was long and not easy, I was doing it while raising my son. After a while, you need a reason to get better. As a parent, I got better for my child. When I got better, my reason to get better changed. I was helping someone else to get better so they could raise their children and not be sick.

How do your personal experiences drive your volunteerism?

Paula: It’s important to us, given what we have been through, that we limit the journey from diagnosis to recovery.

Describe your roles within Midcoast Lyme Disease Support and Education

Paula: We started MLDSE initially to serve Midcoast Maine with support groups and resources for people who have been diagnosed with Lyme disease, want information on Lyme disease and other tick-borne diseases. It quickly grew to a statewide resource. It was important to us to get patients connected to resources they were having trouble finding. We travel all over the state, raising awareness about lyme and tick-borne diseases and sharing prevention education. We also offer free educational resources to medical provider seeking more information about tick-borne disease. We host monthly support groups, quarterly workshops and yearly conferences. We both talk to patients every day on the phone, through email and social media.

What’s been the most rewarding part of your service?

Angele: When we have a patient say that we’ve connected them to resources, or to a doctor, or a support group, and they are now starting to get better. A woman was almost in tears telling me that we had connected her dad to resources, and because of our help, he’s getting better. From looking into her eyes, I knew what that meant to her. I don’t volunteer for the recognition, but knowing that we are getting results for people, how can you not help.

What have you learned through your experiences as a volunteer?

Paula: I have absolutely experienced personal change as a result of my volunteerism. Being touched by this disease personally and having come through something that has taken the lives of other people, that will turn your entire world upside down. It shakes you to your core. I very quickly realized that there is no “one size fits all” approach to help somebody. It has to be unique, filled with compassion, understanding, listening and tailored to their individual needs.

Share one personal story with me from your volunteerism

Paula: (I apologize if I cry) This will be our fifth year at the Maine Union Fair. When you’re talking to a group at a fair, you never know when your words are going to make an impact. I received a phone call at home one day, the woman on the other end of the line said, ‘Hi Paula, you don’t know me but you saved my life.’ Her mom and dad had visited my booth at the fair, heard me sharing my story with someone else, and I spoke with them about resources. The woman decided to call the doctor whose contact information I had shared and try to get help one more time. The reason why I say that is because she had a plan to take her own life, she had everything drawn up. She couldn’t handle the pain and the confusion anymore and thought that her children would be better off with her parents. When we spoke, she said she wasn’t completely well yet, but she could see the light at the end of the tunnel. I sat in the kitchen, just crying at the table. You just never know. If we make a difference in even one life, everything is worth it.

What do you want people to learn from your story?

Paula: I was misdiagnosed by 23 different doctors. You need a reason to get better, to hang on, and to get out of bed when the last ten doctors have told you that you just need to adapt, because this is your new normal. There is nothing normal about being chronically ill. We have a personal investment in helping other people get better by sharing our firsthand experiences because of what we’ve been through.

Accelerating people-powered change

At the core of our philosophy is the belief that the most powerful force in the world is the individual who has realized their power to do good. At Points of Light, we inspire, equip and connect nonprofits, businesses and individuals ready to apply their time, talent, voice and resources to solve society’s greatest challenges.

Paula is the president of the MLDSE, the co-chair of the Access to Care Services and Patient Support subcommittee of the federal HHS Tick-borne Disease Working Group, the Maine-partner of the national Lyme Disease Association, member of Maine’s CDC Vector-borne Workgroup and active in Maine’s Lyme legislation. You can reach her at paula@mldse.org or visit www.mldse.org