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I came across this poem I’ve written a couple of years ago when the pain was still intense and every day was a struggle. Looking back brings mixed emotions in my heart: on one hand, I can’t believe what I had to go through on the other hand I’m celebrating life and feeling better:) I wanted to share it with you in hopes that it may bring you some hope. You’re not alone. And that in itself feels good.
“Your party is so fun, but I can’t stay.”
“Why not? Don’t tell me. Feeling sick again?
What’s wrong with you? It’s maybe in your head.
Just stay! And drink! Soon you’ll feel the sickness fade.”
“No thank you, I must go, my friend.
I know you mean well, but I’m fighting,
Something bizarre.” And I got up and gathered all my strength
To say goodbye to all the other guests,
Some dear sweet friends, a few I didn’t know at all.
Once in the car, I hung my head real low.
“I feel so bad.” “Will pass.” My husband said.
“Not about that, I feel fake, I can’t withstand
The energy a party thus requires anymore.
I’m a bad friend.”
“Sweetie, no you’re not.
You need your rest. In truth, I’m glad to go.
The loud dance music, drinking, and the show,
Is not my thing. I’d rather go, and spend
The evening just the two of us, alone, eating some bread.”
Emotionally I was relieved.
But physically my eyelids were so heavy,
The body, craving safety and some rest,
It kept reminding me of one sure truth,
I was no longer superwoman.
Once home I climbed into our bed
And watched some “House MD” my favorite show.
I’ve lived in bed for many days and months now.
To go downstairs for a piece of bread
Was a survivor’s effort I did dread
As heavy, deep fatigue was now my plague.
A phone call from my friends became rare
As I kept suffering in bed, all hope but frail.
When someone called I lifted painful hands
And held with effort, the black plastic thing we call a phone.
“Hello?” “You feeling better? You left again so early.”
“So sweet you called. I was exhausted.”
“Are you okay?” “Not really, but I hope one day this too will end.”
“What is it?” “Don’t know, the doctors are dumbfounded.”
No diagnoses meant no cure.
And days passed slowly and the calls faded for sure.
I heard some gossip going on behind my absent self:
“She’s just pretending. She’s not that sick.
Attention seeking. My gosh, that’s awful! How pathetic. I know.”
And I did wish I was that stupid, to seek attention in that way
But pound by pound my flesh shrunk quickly
A thin ghost figure living in my house instead
That lingered like a feather ready to be spent.
And test by test and some more blood.
No answers. Just frustration and an empty bank.
My God! I’m passing all too soon. I’ll miss my loved ones.
Make sure my kids don’t hate you cause I worry.
I pray my hubby will find peace after I’m gone. Protect them.
I am not ready. With one shallow breath: I’m scared and somewhat numb.
Yet, morning after morning my eyelids, although swollen and in pain
Kept opening, reminding me that hope was raining in my lane.
Ten months now passed, too many tests to count,
I get a phone call. It’s a Sunday. Pick up my cell. The doctor:
“It’s Lyme disease, the test is positive.”
A diagnosis! Great! I’ll have a cure! But no.
A neurological dark storm would steal some more,
Would bring me further to the hollowed grave’s door.
I stared at Death and made a deal:
“I’ll fight you! I won’t go without a shrill, a temper tantrum, and a prayer wheel!”
“Go right ahead dear, in the end, I always win.”
And then and there I thus knew
My end was coming. Prayed some more:
“God you must have the final say, I’ll be prepared.”
And thus he did. Four angels there they stood
In all four corners of my bedroom
Tall, strong, and guarding, silent like a tomb,
Too tall to see the end of them, but oh so sure
They were of themselves. “Thank you I whispered.”
To them and God. “But why? I am a no one.”
“That’s not true. You’re mine, my child, a value without end.”
I cried long tears held inside for years until I was spent.
“I must be valued for you to send such help.”
And only then believed what I did hope for years to be true:
I did have value! And nothing ever could,
Take that away. No flaw, no stain, no human blame.
“Thank you, dear God. I now believe. You are the fiber of my very being.”
And day by day, some bad ones too,
I kept on fighting, cause now I knew,
With God along my side, I will be cured one day.
And it took time to feel strong in my body.
Another angel, a God-like presence,
In mother, form stood by my bed
And cried with me and brushed my forehead
When pain took over in that deep, intense way.
She cried, I cried, and we held hands.
She cried for me and all the others
Who suffered in a similar bed.
They came from all nations, ages, and both genders,
Of all beliefs. Even those who hated God. She cried for them as well.
She cried with them, with me, and we were not alone.
God, one thing I know
You’re never threatened by my pettiness,
My weakness, or my anger, and all my questions,
And temper tantrums, my hateful speech, and all my hesitations.
And I love that!
Despite it all, you still love and forgive our deep frustrations.
When something awful happens
And I demand an explanation
You have more patience,
Than I’ll ever do.
In many ways, I love you too. The End– Carmen McKnight