Lyme Time with Paula Jackson Jones

Stand By You

Wed, 08/14/2019 - 3:00pm

Whenever I’m feeling overwhelmed, I love to listen to Rachel Platten’s song, “Stand By You.” The lyrics are so supportive for whatever I am going through in that moment, I feel like somewhere, someone is on my side, supporting and rooting for me for a positive outcome. At the same time, assuring me that should the outcome not be positive, they won’t leave my side until the moment passes. Take a listen:

Hands, put your empty hands in mine
And scars, show me all the scars you hide
And hey, if your wings are broken
Please take mine so yours can open too
'Cause I'm gonna stand by you

Oh, tears make kaleidoscopes in your eyes
And hurt, I know you're hurting, but so am I
And love, if your wings are broken
Borrow mine so yours can open too
'Cause I'm gonna stand by you

Even if we're breaking down, we can find a way to break through
Even if we can't find heaven, I'll walk through hell with you
Love, you're not alone, 'cause I'm gonna stand by you

It’s not fair to face something so overwhelming that you feel it coming at you from all sides. It’s so intense that it takes your breath away and you wonder if you can possibly make through another day. Medical misdiagnosis, unable to afford testing or treatment, losing friends and familial support. This is the reality a patient affected with tick-borne disease goes through. This becomes your new normal. Cancelling appointments, missing school functions and sporting events, slowly losing grasp of your daily household functions such as grocery shopping and cooking. Try as you might to hold it together, you’re slowly crumbling inside. You lose sight of the person that you once were as you fade away from the routine that you once had. And if no one is there by your side, carrying you and encouraging you through the darker moments, you keep fading away.

I know this firsthand because I was there. I was fading, each day a little more. I became less of the wife, the daughter, the sister that I once were and I became more and more of an undefined illness that threatened to consume me. The weight of not knowing crushed my spirit with every negative test and with every prescription that failed and with every debilitative symptom.

The day I met the provider who changed my entire world, who had gentle, compassionate eyes and a soft, quiet talk, who took my hands and looked me straight in the eyes, gave me my diagnosis and told me that she was going to walk with me through this journey and not leave me side, was the day I found strength I never knew I had. It had gotten tucked away, deep down inside from all the providers who didn’t believe when I raised concerns about my symptoms, who made me feel like I was going crazy and making things up. For what? For attention? Trust me, no one wants a tick-borne disease and you certainly don’t get the compassion and community support that you get when you have other diseases. No, no one is faking this for attention. There is a saying in the Lyme community that gets shared almost daily, “Those with chronic illnesses aren’t faking being sick …They’re actually faking being well.” When you see someone out and about who has a tick-borne disease, you can best believe that they are putting their best foot forward. You have no idea what it took for them to leave the house, drive a car, or even maneuver around the store. And you best believe that when they get home, they’re done because it can zap the energy out of you not only trying to be around people but carry on conversations and get the items on your list and find your way home.

I suffered terribly with neurological symptoms. I couldn’t remember people, places, things. I had trouble putting my words together and recalling names. I knew that I knew someone, but I could not tell you who they were or how I knew them. I smiled a lot when they said that I looked great. I mean, how was I supposed to look? What does someone with a tick-borne disease look like? Because of my neurological symptoms, I wore dark sunglasses all the time because light sensitivity would trigger seizure-like activity. I cried a lot because leaving the house only reminding me of what I couldn’t do, of places that I couldn’t go or things that I couldn’t remember. I was frustrated a lot and that would turn to anger. I was angry and sad that no one could fix me and I couldn’t understand why.

So yeah, when I hear Rachel Platten’s song, “Stand By You,” it floods me with so many emotions and it fuels my spirit to be there for others. “Even if we're breaking down, we can find a way to break through. Even if we can’t find heaven, I’ll walk through with you.” If you need to scream, cry, vent, or ask a million questions, I’m here. It’s not simple, there is not quick fix. But you can lean on me and borrow my wings until yours open. I’ll stand by you.

Paula is the president of the MLDSE, the co-chair of the Access to Care Services and Patient Support subcommittee of the rederal 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