Lyme Time with Paula Jackson Jones

A change is gonna come

Posted:  Sunday, February 11, 2018 - 8:15am

King of Soul singer Sam Cooke said it best when he crooned, “It’s been a long, a long time coming but I know, a change is gonna come.” That is what hope looks and sounds like. It’s believing that change is going to come no matter how long it takes. Whether it’s a change in your health or a change in your situation, have faith, hold tight to hope and know that this is not going to last forever. A change is gonna come.

I wasn’t always so convinced. Early in my journey, while trying to figure out what was wrong with me, I was so focused on my pain, on labels that didn’t stick, on treatments that didn’t work, that I was willing to just let go and be done with it all. No one can withstand physical pain and mental confusion forever. I’ve shared of the night that I thought was my last here on earth, writhed in pain, lying on the floor of my bathroom, knowing that was how my husband was going to find me. I prayed for God to call me home, to relieve me of my pain, to uphold my husband and my family in the pain that I knew was to come to them…and then I passed out. I woke the next morning, still on the floor of the bathroom, with the sun shining in through the window, framing me in it’s warmth, and I knew deep down inside that I was going to survive, and that change was going to come. I didn’t know in that exact moment what change would look or feel like and even when it would present itself, but I had an unexplained renewable hope that I’ve held tight to and that has gotten me to where I am today.

I don’t want to mislead you and say that things got easier from that point forward because it most certainly did not, but my focus and my attitude about my situation did and in return, that made getting through the difficult moments more attainable.

The greatest change that I’ve noticed is the support that people have shown me. Using my words to share my personal story, being vulnerable, transparent and extremely honest, has people reaching out to me and doing the same. It’s causing conversations between patient and provider. It’s bringing about opportunities that I never dreamed were possible.

There’s a saying that when life hands you lemons, you make lemonade. Sometimes that is easier said than done. In order to move past the pain, anger and overall disbelief of what you’re going through, there has to be acceptance. You have to come to a place where you accept those lemons and then you sit back and look at all your options. You can suffer in silence, you can be angry and complain all the time or you can take those lemons and make something useful from it. No one likes to suffer but knowing that good can come from it, makes it easier to swallow and the pain to carry.

Knowing that change will come gives us something to look forward to. When I first got involved with Lyme advocacy, it took me a while to fully understand and wrap my mind around what Lyme patients worldwide were going through. It’s a medical nightmare and one that you will never fully understand until you or your loved one is going through it. It’s watching them struggle in pain, treatment after treatment, trying to find the right fit that they will respond to, waiting out the storm that you have no control over. It’s one label after another, one misdiagnosis after another.

But all that will change. I’ve seen it, I’ve heard it. There is a shift occurring.

More research is coming. More conversations are taking place. More education is coming. Better testing is coming. Better treatment options are coming. Access to care services is coming. It’s been a long, a long time but I know, I know, a change is gonna come.

Paula Jackson Jones is the president of the MLDSE, the Maine-partner of the national Lyme Disease Association, a member of Maine’s CDC Vector-borne Workgroup and active in Maine’s Lyme legislation. You can reach her at