Exquisite Pain:

1. When:

 Spasms twist your body 
suddenly 
puppet with a clawed hand.
Pain’s fingers
crack 
plyers twist
approximately 
three quarters of the way 
around. 

 They carried you into the bathroom 
when you couldn't move your legs…

 Muscles rip
Dissolve—
a slow fade…
Whispered words:
fatigue, disinterest, apathy.
Anhedonia (a favorite): 
“An inability to experience pleasure from activities usually found enjoyable.”
The definition makes your chest burn.
Let’s try walking… Nerves awash in acid 
fried electrical wires 
Now stop...

A woman asks if you are okay
Against a mask of salt salt, you try explaining  
that This is breaking your spirit.

 You walk out 
because they can’t believe 
what they cannot solve.
And all your survival, 
reduced to
begging.

 An accidental
double dose
Tongue thick,
Brain mired in thought
(imagination sleeps)
While words trail further
Fingertips slip…
Is this how it feels
to die
in slow motion?

 They say your pain is “exquisite.”
(you imagine a ballet dancer or Impressionist painting)But the American Heritage Medical Dictionary says 
that This is 
“Extremely intense, keen, or sharp.”Laughable how little that touches screams—
The attempts to crawl through your mattress to escape…

 You try to make it both.

2. When at the Doctor’s:

 He sleepwalks in, asks what you do (did) for a living, and says, 
You nurses are all the same, just looking for good drugs.

 Staring contest
Scribbling meager prescriptions
Pebbles in a rushing river...
Pretending that they will slow
the onslaught.

 We’ve reached the end of the road.You are 33.

 
3. When They Tell You:

 They tell you that you need  
to maintain friendships, 
but you have no energy 
to even 
reach
for even the phone.

Do you need me to call 911? 
Yelping like an injured animal;
dry heaving; writhing…

 They tell you: stop focusing on it…
The doctor says: I understand.

Dear Doctor, 
This pain is 
A serrated knife, cheese grater, fishhook
If you were being repeatedly stabbed,
would you be able to focus on your job? 
Safely drive your car? 
Sleep at night? 
Would you be able to sit down long enough to enjoy a meal or a movie? 
Would you be able to ignore this?
I want you to imagine
living like this 
for years, 
wondering if it will ever stop.
You do not 
understand.

 4. When Will It End?

In and out of remission. 
Weeks or months without a flare. 
But it always comes back.

Are you still sick? they ask.
Eventually, you begin replying 
with responses such as: 
No, ran 50 miles yesterday, hiked up and down the mountain, swam 150 laps, etc. …to see how many would carry on and say, That’s great!

 Admitting defeat is:
lying in pain….
after years of lying
about pain.

 It always comes back.

5. When You Weigh the Cost:

 Never thought you’d have to weigh the cost 
of living. 
$1400 for a 1-month supply.  

 You used to count calories.
As if born of machinery, 
Formula and equations. 
Then you got sick: 
Traded calories for “spoons,” energy, life-force, will to live…
If I do [insert menial task], 
I will be down for [insert amount of time]. 
Do the equation, use the formula, solve for X.

 What is success, happiness, pleasure?
Instead of this, you have numbers:
4/3/1996: the first time you saw a doctor
8,000 platelets per microliter
6 months to see a hematologist
Dozens of tests
Hundreds of blood draws and IVs 
25 pounds lost
$50 left for food this month
Gas tank at 0
20 years of work
$100,000 in student loans
Hope: too low to register on tests. 

 
6. When You Balance:

 The other pain
is always moving, 
moving, 
moving.
This one stays.
This one means something.

 And you have to believe 
that your grandmother’s prayers to a god
in whom you do not believe
are still protecting you.

The wind
Here on the highwire,
However gentle,
Hurls my focus
To the desperate balance
Grasping with my toes…

Kaitlin A. Kerr is a nurse, actress, and writer. She holds degrees in both English Literature and Nursing. Much of her work grows out of the reality of living with a rare chronic pain disorder and finding true meaning in art, beauty, and connection with others. Some of her recent work can be found in Pif magazine, Cathexis Northwest Press, Haunted Waters Press’ online showcase: SPLASH!, and more.