I have known a few people over the years who’ve battled Lyme Disease. It is
a debilitating illness that few understand. May is Lyme Disease awareness
month. Click
here to learn more about the cause, prevention, symptoms, and
diagnosis.
According to the CDC, “Lyme disease is a multisystem disease…transmitted
through the bite of certain species of blacklegged ticks… In 2013, state and
local health departments reported approximately 35,000 cases of Lyme disease to
CDC, making it the
fifth most commonly reported nationally notifiable condition…as
many as 300,000 persons in the United States might be diagnosed and treated for
Lyme disease each year.”
(cdc.gov)
I’m privileged today to welcome Paula
Jackson Jones to share her story through a poignant letter she wrote to herself
five years after contracting Lyme Disease. If you know someone who has been
newly diagnosed or has suffered for years, this will give you insight into
their struggle. If you’re the one with the diagnosis, I hope Paula’s words will
be an encouragement to you.
Dear Paula 2009,
I know 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 you didn't ask for or were even aware 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 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 you'll 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 you trust will fail you, turn their backs on you, and walk
away. They will mock you because they won't understand what you're going
through. I know how frustrated you'll become because you won't understand it
either. You'll want compassion and support, and I am here to tell you that you'll get it—but in the most unconventional forms.
Don't worry about the ones who let you down, who walk away, because their
absence will 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 cannot. They will inspire you with their stories, educate you with
their experience, and encourage you to fight the good fight and stay the course. One day, they will recruit you to join them as a 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 ounce of strength that you have. Even the most mundane daily
chores will be taken from you. You'll be attacked from all sides—physically,
mentally, and emotionally.
I am writing this letter to assure you, 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 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.
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'll need to filter things and do your
own research (that part I know you will love). The frustration will come from
the many walls you hit, but keep hitting them, for one day they will crumble,
and you'll see a path that will take you in a different direction.
Please trust me—you want to take this path.
As unconventional as this path may seem,
it’s going to save your life. You won't understand a lot at first, but the
people you meet on this path will teach you in ways so you’ll fully
understand everything and know what to expect. They will stay close to you and
check in on you. You will never feel alone again. They will empower you with
their unconventional ways and 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
five 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 for the course but
remember these words—you will feel better and you will see your life going in a
new direction.
When you first become sick, you're going to think this will pass. 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. 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
how you think. But trust me, it will be bad. It'll be frustrating. It'll
make you scream at doctors and 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 and borrow some of their strength until you regain yours. Just remember
to pay it forward!
I hope I've been able to get through to you, and I know 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 people 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 that connection will forever link you to each other and strengthen
one another even from a distance. That connection will take a
debilitating disease that can weaken even the strongest, toughest person and
make them #Lymestrong \0/
Love,
Paula 2014
©paulajacksonjones2014
lymewarrior24/7/365
Thank you for sharing your courageous
journey, Paula.
If you’d like to share your thoughts
with Paula or offer encouragement, please leave a comment. I know she’d love to
hear from you.
God bless,
Laura
“Disease or Health Direction”
image courtesy of Stuart Miles/FreeDigitalPhotos.net.
“Unhappy Woman Hiding Her Face”
image courtesy of Stock Images/FreeDigitalPhotos.net.
“Hope Puzzles” image courtesy of
Stuart Miles/FreeDigitalPhotos.net.
“Hope For Cure” image courtesy of
vitasamb2001/FreeDigitalPhotos.net.
