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Lyme Awareness Month Poetry: "Wondering" – Real-talk about life with Lyme

5/13/2017

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​I want to preface this poem with a few notes (this will also be under my Poetry tab for anyone interested):
  • I initially wrote this during a very dark time in 2015.
  • Today, in 2017, in general, I am better at looking for the positives and choosing joy whenever possible.
  • The fact immediately above does not make me immune to experiencing the same emotional darkness I experience from time to time with these illnesses.
  • I've been too scared to post this on here for fear of the reaction of those who know me, so I want to add this disclaimer: I'm not suicidal; there are many in this situation who would rather be at home in heaven than on this earth of suffering, and yes, there HAVE been times, even within the past...24 hours...I've cried and screamed out, begging God to take me home because all of the pain, physically, mentally, emotionally, spiritually, and the myriad of other unrelenting, debilitating symptoms, it all just seems like too much to handle, even for a second.
  • As of typing this, God hasn't granted my wish...so that must mean what I say all the time is true, (and thankfully Mandisa put the concept to music with her new song "Unfinished" which was perfect timing:
  • I must be a good work, after all. He's just got so much left to do in me that my status remains "good work in progress."

All that said, this poem is somewhat somber, even though the ending does end on a note of hope. But if you are triggered by mentions of death, or anything related to depression with chronic illness, I advise caution when reading.

wondering


Do you ever wonder why?
 
Why do we keep fighting
when our battle seems imbalanced
and our war unconquerable?
 
Why do we continue to live each day with the hope that we'll sleep, wake up, and maybe things will be different this time;
 
A little better.
A little calmer.
A little more manageable.
A little less panic, less pain.
 
When day after day plays the same cassette
 
front to back
flip it over
back to front
repeat
 
Why do we persistently go through the motions we've been forced to adopt?
 
At some point, the line is blurred,
or at least smudged – a grey trail, created by one of those multicolored book fair erasers that does anything but erase.
It gets to a point where it seems all we do is go through the motions.
And go through them again.
And yet again
and again.
Until death do us part.
Until death do us part.
Until death do us...
 
And that's the line.
It's not that we want to die.
(we don't–
–I don't)
We just have trouble figuring out why we keep living–existing–
if this is all there really is for the rest of our lives -
 
The monotony of a chronic sorrow–
a far greater portion of this battle
Than ever acknowledged by those who wear the white coats or hold the red stamp that decides our fate
on paper.
[DENIED]
 
A chronic sorrow consumes you,
its hunger more insatiable than your worst zero-sleep induced late night cravings and fruitless foray into cabinet raiding
[LOOK! A GLUTEN FREE, DAIRY FREE, SUGAR FREE, NUT FREE, FOOD FREE, FUN FREE, FREEDOM FREE COOKIE!]
could begin to comprehend.
 
A chronic sorrow, in many ways, is the most painful pain in all of pain paindom.
It changes you–
Even when you loudly proclaim to whomever is around
that your soul,
your mind,
your spirit,
are still you.
Still inherently you.
 
Still inherently the you who puts on a mask every second of every day to assure those who love you that you are still inherently you–
And in your mind that's case in point, matter settled, thank you very much–
You wear the still inherently you mask because you want to protect others from the truth.
The truth that you have lost yourself.
Your will,
your drive,
your ambition,
your hope.
They need to see you believe you are still you.
It's for their own good,
their sanity,
their peace of mind and ease of worry.
So you continue wearing your still inherently you mask,
so others can see the projection that you are still inherently you
even when "inherently you" are two words with no apparent correlation–whatsoever–in your mind.
You see, it all comes back to you.
 
                     —-
 
The mask is for your protection,
not theirs,
despite what you tell yourself.
It helps you keep others from seeing the depths of your pain–
Not the physical pain, or even the mental pain, no, those are okay to share–
The pain of identity theft,
loss of self,
who am I what am I doing where am I going how how how why?
pain.
 
But never when.
When is definite,
A fixed point.
Homophones are the cruelest of grammatical idiosyncrasies.
When is a word you ceased using long ago.
Daily breaking promises,
canceling commitments,
retreating inside yourself–your shell–your mask.
Even if out of necessity,
especially when out of necessity–
Evidence the mere existence of your when cannot be determined,
Much less the time your when will actually be that,
a win.
It's a lose-lose situation.
Again,
homophones are cruel.
 
So why?
Why do we wake up each morning,
take our pills,
supplements,
strictly follow our regimen of assorted varieties of detox protocols and specialty diet preparation,
repeat in a few hours,
repeat in a few hours,
and a few hours more,
and a few hours more.
 
Often I lie in bed alone with my thoughts,
unable to sleep, and wonder why in the world I keep pushing forward on this journey?
Please tell me I'm not alone.
 
I know all the "right" answers–
indoctrinated from a young age, the "Sunday school answers."
 
God's plan is far more extensive than we can ever imagine...
 
We can't see the whole staircase but all we need is His light showing us the next step...
 
God's timing is perfect, even though it's not what we would choose...
 
There is a reason for this suffering, and if it can bring Him glory, this will all have been worth it...
 
God heals His children and the fact I woke up this morning shows He's still working on the good work He began in me so long ago...
 
I've been given this road to develop my testimony so I can be the most effective witness I can be for His kingdom...

 
And the list goes on.
 
I do believe it.
The list.
Every answer on the list,
Those above along with those unwritten, unspoken.
 
But that doesn't mean I'm always able to feel that truth 100%.
Or 90%.
Or [insert percentage here].
 
Sometimes I don't feel the truth at all,
despite the knowledge I've had since childhood.
I don't feel it, but I know it.
Sometimes knowing it has to be enough.
Until it's not.
 
I can only speak of my own battles.
I'm not a parent,
I can't currently work,
I can't read, write, edit, study,
I don't have kids or grandkids who give me a reason to keep doing this all day, every day.
To keep fighting.
 
I do have a husband.
He is largely the reason I keep fighting at all, when I frequently want to give up.
This raw emotion shared publicly,
I don't want him to read.
It would have the opposite intended effect–it would create more stress.
All I ever want is to lessen the weight he bears on his shoulders;
And his arms,
legs,
back,
entire body.
All day.
Every day.
For years.
 
He puts Atlas to shame.
 
And he can never know he's the only reason I'm able to go through the motions on some days.
No one deserves that burden.
 
Some days my scope is marginally broader,
despite lack of will or determination or hope.
Some days I go through the motions for my husband as well as my parents, my sister, my brother, my one living grandparent.
Some days I push through each hour, minute by minute,
solely because of the list of family members above.
To save them the grief of seeing my unmasking.
Save them the grief of seeing how my chronic sorrow has stripped away every bit of me,
meticulously,
ensuring not even an essence of inherently me is anywhere to be found,
unless I immediately put that mask back on and break out my children's choir acting skills to proclaim that I'm the same me that I've ever been and there's no one, no, no one, who can ever be as me as I am because I am me and I know I am me and therefore you need to know that I'm me
[even though I'm making sure you know I'm me when I know very well, deep down, that I don't know what me means].
 
 
And ultimately, I continue down this road because I can't even entertain the thought of causing them the ultimate grief that comes only with the loss of a loved one.
 
I'm sorry, but that's a stupid phrase.
 
I'm actually not sorry.
 
It
Is
A
Stupid
Phrase.
 
You don't lose family members.
At least not in the sense for which that phrase was devised.
They aren't lost.
They're dead.
And until you can say that to yourself,
Admit that they aren't just lost, or gone, but they are dead.
On this earth, they are dead.
They died.
Everyone dies.
People we love die.
We die.
Perhaps ironically, death is the only guaranteed event in everyone's life.
You can't have death without life,
Nor life without death.
 
I'm not speaking about heaven and hell--much too grandiose a topic to broach at present--merely speaking of the physical body as it relates to life and death.
 
The human body is the single most resilient entity in existence.
Sudden-onset fatal disasters of any kind aside,
The human body does not give up.
One reason the rates of suicide attempts are exponentially higher than those of completed acts.
The human body does not respond well to threat of death.
I've seen it firsthand more closely than I ever hoped to see.
 
Hospitals may "pull the plug" on a patient who has a DNR or living will,
But what you don't know–
What you never know until you are there.
witnessing firsthand–
Is that the body can exist a long while after the machine has stopped,
After the last-sleep-peacefully medications are pushed through an IV.
Sometimes minutes.
But to everyone present, each minute is hours long,
And all you can do is sit there and wait for your loved one to die.
More often than not, they defy the odds
["I'm sorry, he's got 24 hours left."]
["you said that yesterday, doc, all due respect but your timelines are crap.]
["It should just be a few minutes, she's not feeling any pain."]
["Will it?  Will it really only be a few minutes?  Because if it's several minutes or longer I don't believe a single word you said about her not feeling pain."]
 
 
Except you have to believe your loved ones aren't feeling pain.
When you look at them, you know they are not there.
THEY are not there.
Their bodies may be there,
But THEY are not.
Because the mind and soul are far more eager to escape the pain--
transcending the physical realm--
while our perfectly-designed-but-corrupted-by-sin-and-drugs-and-modern-day-healthcare body gives its grandest display of resilience yet.
It holds on to life longer than any other already-dead-in-everything-but-name entity.
 
It holds on as a terrifically painful reminder that our bodies are resilient, even when our minds are no longer here.
 
Not here.
Not present.
Not you not me not us.
 
 
But our bodies do what they do best,
persevere,
even when we don't want to,
when we're tired and want to throw in the towel, and another towel, and another,
since we have no energy to wash them.
Even when we feel no hope,
when the road looks more like one footstep in the sand that gets washed away before we're within tracking distance,
when we can't for the life of us figure out why we continue, what the point is, where we are or what our next minute will be like–
 
We keep existing because our bodies remain resilient when our minds feel anything but.
 
So we go through the motions.
Muscle memory and resilience is sometimes a better treatment plan for making it through the day than any other.
 
yet–
 
Our mind is not our brain,
not in the literal definition of the word,
but many people do things to strengthen their brain
(to strengthen nerves, synapses, memory, and signals sent to/from the brain).
Very much the same process as training for muscle tone and strength--
Cerebral muscle memory.
The nervous system.
The fight or flight "look how resilient I am" mental side of the equation.
 
But who's to say we can't train our minds?
Not the brain, nerves, synapses, or any other biological element.
Our minds--
where that inherent you is found.
If we realize we've lost our inherent you,
it means we know there is [was] an inherent you in each of us.
Possibly until recently,
possibly silenced a long time ago,
possibly only able to be remembered through stories we were too young to remember, but hear secondhand from relatives.
 
But it was there.
And knowing how resilient our bodies are,
While we're still living,
I have to think our inherent you is equally resilient.
And we have the ability to train our minds,
via any possible method,
no matter how off the books it may seem,
because to answer the "why" from the very beginning,
we must first answer "who?":
Who am I?
Who is my inherent me?
And how can I reconnect with my inherent me-ness?
 
Once we answer those questions--
Often a longer process than we'd prefer--
Only then can we answer the "why?"
 
And our answer will simply be,
 
Me.
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  • Blog
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  • Treatment
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  • Encouragement
    • Quotes, Scripture, etc.
    • Videos, Pictures, etc.
    • Poetry
  • Online Resources