How Talking About Lyme Disease Saved the Life of Someone I’ve Never Met

I just got off the phone with a 29-year-old woman who has two young children and lives in the state of Maine. I have never met this woman before and she has never crossed paths with me, my organization or attended any of our events for Midcoast Lyme Disease Support and Education (MLDSE).

Her parents met me last summer at the Union Fair and we had a lengthy conversation about their daughter’s struggle. I shared some of my personal journey with them and, before long, all three of us were in tears.

These parents went back, had a conversation with their daughter and shared my journey and the struggle I went through. They also gave her the name of a Lyme disease-literate provider here in Maine, which I thought could be helpful for diagnosing their daughter.

Six months later — today — their daughter calls me. The conversation went like this:

(Deep breath.)

“Hi Paula, you don’t know me but you saved my life. I did not know what was wrong with me and I had been to a dozen or more doctors who couldn’t find any cause for my symptoms, other than stress from being the mother of two young children. I didn’t believe them, of course, but I didn’t have any ammunition or fight left in me. My parents didn’t know this, but I was contemplating suicide the weekend they met you at the fair. I was going to leave my two young children with them, knowing they would be raised in a kind and loving home by two people who could give them what I was physically and mentally unable to give them.

But then, unknowingly, you entered my world.

You see, my parents came home and told me they had met a woman whose story and struggle was ironically similar to my own. They further told me you had also gone through 20-plus doctors before you were finally connected to a provider who figured out what was wrong with you, who administered proper treatment, and how you have been in remission now for several years. They told me you had gotten your life back and for the first time in a long time, I felt hope.

I called that provider and I was able to be seen within two weeks. I could not believe how kind and compassionate this woman was. I went into the appointment expecting to have to fight and advocate for myself and instead, we sat there and cried together. I really truly felt this woman knew what I was going through and in just a few short weeks, test results revealed just that.

I have been in treatment ever since and although I am not at 100%, I am so much better than I ever was. I can’t see the light at the end of the tunnel, but because of you, I know it’s there and I am willing to wake up every morning and fight not only for my life but for my babies and my family.

I hope someday I get to meet you and hug you and cry with you. You may never fully know the impact you have with the work you are doing, but I wanted to call and share one story about one life you forever changed because of your words and actions.

‘Thank you’ doesn’t seem to be enough, but from the bottom of my heart, I truly thank you for saving my life.”

If this is you or someone you know, please have them contact us at www.mldse.org. We can help!

Paula Jackson Jones, president and co-founder of MLDSE, paula@mldse.org.