After going into remission (April 2014) from my battle with late stage neurological Lyme disease complicated by co-infections, I woke one morning feeling very unsettled. As I sat at my computer, these words poured out of me, out of my heart, out of my soul and before I knew it, my Dear Paula 2009 letter had taken flight and was being shared around the world.

This....THIS.... is why I do what I do. This is why I fight so hard.

Dear Paula 2009,

I know that this is going to sound strange but in just a few short months, something is going to happen to you, something that you are not expecting, something that you didn't ask for or were even aware that could happen ~ your life is going to change in ways you never fathomed.

I am writing this letter in hopes to prepare you, to bring you some comfort, for what lies ahead is not pretty or easy. I know that you consider yourself a strong, resilient woman. I know what you've been through, what you've survived. I am here to remind you that all that strength will be needed, will be used. All those coping skills will become an asset in ways you never thought you'd have to use them. I am here to assure you that you will survive it even though there will be times that you will cry out to GOD to call you home, when the pain is so unbearable it supersedes any other thought.

I am writing this letter because I know how you think, how you operate and I want to tell you that what you think and what you know will be challenged. People that you trust will fail you, will turn their backs on you and walk away. They will mock you because they won't understand what you are going through. I know how frustrated you will become because you won't understand it either. You'll want compassion and support and I am here to tell you that you will get it ~ but in the most unconventional forms. Don't worry about the ones who let you down, who walk away because they are just going to make room for all the new people who will come into your life; people who share this journey with you, who understand you in ways even those closest can not. They will inspire you with their stories, educate you with their experience and encourage you to fight the good fight, to stay the course and one day, they will recruit you to join them as fellow Lyme warrior, Educator, Advocator and Supporter.

I am writing this letter because although your body will break down and you will lose sight of the woman you once knew, you will be rebuilt into something stronger, something greater. Now listen, you survived all those things before this, this path will strengthen you even more. It will grow you in a direction you never thought about but are needed in. And as you grow, you will have all the support you need for every step of the way. I need you to remember this part because you will lose every ounceloop of strength that you have. Even the most mundane daily chores will be taken from you. You will be attacked from all sides ~ physically, mentally, and emotionally.

I am writing this letter to assure you, that although there will be some very dark moments filled with some of the worst pain you've ever felt, you won't be alone. Your cries will be heard, your tears collected. All your ashes will be saved and restored one day. I am here as living proof that you will survive this pain, the darkness, the despair and even the heartbreak of everything that you will lose. I am here to tell you that pride won't get you anywhere. You will have to ask for help. It will humble you and from there, you will grow. There are lessons to be learned and whether you want to or not, you will learn them!

Now this next part of the letter may be difficult to read and even harder to grasp.

I am writing this letter to tell you that those doctors whom you've place all your trust and faith in will fail you on the first part of your journey. They will challenge you and exasperate you. You're going to face some difficult times and hear some not-so-nice things. You're going to feel alone and desperate. You're going to feel lost and hopeless. But I am here to remind you to stay the course, don't give up because Hope is out there. You just need to keep going and connect the dots. You're going to have to listen to others who have gone down this path and you're going to need to filter things and do your own research (that part I know you will love). The frustration will come from the many walls that you hit but keep hitting them, for one day they will crumble and you will see a path that will take you in a different direction.

Please trust me ~ you want to take this path.

I am writing this letter because as unconventional as this path may seem, it is going to save your life. You won't understand a lot at first but the people that you meet on this path will teach you and they will do so in ways so that you will fully understand everything and know what to expect. They will stay close to you and they will check in on you ~ you will never feel alone again. They will empower you with their unconventional ways, empower you to want to get better, to want to make a difference.....for others.

I am writing this letter because I don't want you to give up hope. I can't say how long this bend in the road will be, for I am still here on this journey 5 years later but so much better than I ever was. I can say now that I never thought this day would come ~ but it did. I will tell you that you will get better but not before you feel worse. That is just par the course but remember these words ~ you will feel better and you will see your life going in a new direction. I know when you first become sick, you're going to think that this will pass and I am here to tell you that it will but it will take time. It will get worse before it gets better, that is just how chronic illnesses work. I am here to tell you that this illness will forever change your life. It will break you down physically as it grows you spiritually. It will strengthen core values within you that had been ignored and make them a priority. It will change your outlook on life and set your feet on a new path. You won't know where you are going or when you will get there but that won't matter because you'll enjoy all the stops and people you meet along the way.

I am writing this letter because I know you will find all of this hard to believe. Doctors turning their backs, insurance wars, outdated guidelines by the IDSA and CDC, misdiagnosis after misdiagnosis and failed treatment. I know you and I know how you think. But trust me, it will be bad. It will be frustrating. It will make you scream at doctors and it will reduce you to tears in public settings. You won't care anymore but I am here to tell you DON'T GIVE UP! There will be many stumbling blocks but you will advance. You will need to lean on these new friends, borrow some of their strength until you regain yours ~ just remember to pay it forward!

I hope that I've been able to get through to you and I know that this all sounds like crazy talk (and you will be accused of that too while on this journey), I am writing this letter to tell you to keep pushing forward, don't take NO for an answer, when you hit a wall keep pounding until it crumbles, when you feel lost Cry Out for there are people who are there to help you, when you feel alone lift your head and look at the thousands who stand with you.

You won't know or even remember all their names but you'll know their stories and its that connection that will forever link you to each other, strengthen one another even from a distance. It's that connection that will take a debilitating disease that can weaken even the strongest, toughest person and make them #Lymestrong \0/

Love,

Paula 2014

©paulajacksonjones2014

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 and visit her website www.mldse.org