Okay, so on nights like these when I can’t sleep at all, instead of lying in bed and (unsuccessfully) willing myself to sleep, I choose to write. The following is a rough sketch of a poem I just wrote in a moment when I was experiencing three main feelings: 1.) My heart has been aching to spend just one more day with my great aunt that went home to Jesus in February, 2.) I’ve wished more times than I can count that we would’ve had the answer of Lyme and friends so she would’ve at least known the specific battle I now fighting instead of what we formerly deemed “mystery illness X”, and 3.) I’ve desperately wanted to explain to her that even with as horrific as Lyme and friends are, one blessing that has come with this battle is the fact that the eating disorder I’ve struggled with for 10+ years has (at least for now) been out way on the back burner as I focus on what I need to do to win this battle against these diseases (Lyme, etc) that are stealing my quality of life every day.
The poem is thus far untitled because I’m really bad at titles and can’t come up with one right now. Also, I don’t usually go the rhyming route with my poems, but that’s what happened with this one so if it seems forced at any point just go with it.
This is for you, Neni.
There are so many things I want to tell you,
and many more I want to ask.
Can you see what I am going through?
Are heavens windows made of glass?
I know you’d like to be with me
to talk and hug and cry.
And I know you’re up with Jesus
but still I sometimes wonder, why?
Why did God make your time to go
precisely when He did?
There’s so much I want you to know–
I’m still your little kid.
I’m fighting different monsters now–
they finally have a name.
I only wish you had been here
when all these answers came.
My days are mostly filled with pain.
Exhaustion’s sure abounding.
And nowadays my once-good brain
is constantly confounded.
I find myself quite frequently
still picking up my phone
to dial you up and fill you in,
but I know no one is home.
I want to tell you good news, too–
I know you’d like to hear–
that with this new war I am in
other fights have disappeared.
All you wanted for me so long,
was for my smile to resurface.
And that’s the proof God’s given me
that this battle has a purpose.
While my body suffers constantly
as I search for how I’ll heal,
my smiles, though few and far between
are finally, once again, real.
And guess what? Even with the violent
waves I’m forced to tread,
I’ve found joy where it was missing too long–
in autumn leaves…and pumpkin bread!
Of all the people that I love
I’d want you most to see–
That for the first time in 10 years,
I’m taking care of me.
My journey with this newfound foe
is still long in the making.
I’ve so much further yet to go–
But there is no mistaking–
I’m going to fight, I’m going to win,
like I’ve proven I can do.
And all the while I’ll be holding in my heart
the love of you.
I’m counting on you, Neni,
you have to understand–
part of the reason I get through each day
is because God lets me keep holding your hand.