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 the Midcoast Maine Lyme disease 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 awhile, 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 role with Midcoast Lyme Disease Support & Education.
Paula: I am the president and co-founder of MLDSE, Angele is vice president and co-founder. We started MLDSE 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. Once people realized that we are a community-based resource, and that we are helping people, they immediately connect, because they see the fruits of our labor. Through support groups, events and workshops, we are discussing prevention, education and sharing resources. We are inundated with calls and emails 365 days a year, supporting people however they need it. We also fundraise and have received grants.
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 made a difference in 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 you just need to adapt, because this is the new normal. We have a personal investment in getting other people better by sharing everything that we’ve been through.
How can readers help?
Please visit our website for more information about how you can help.
Do you want to make a difference in your community like Paula Jackson Jones and Angele Rice? Find local volunteer opportunities.