This is something I wrote months ago, when I met a girl--Jessica--who made me reconsider my then-current decision not to pursue a lung transplant. Faced with the daunting prospect of moving states away, while being extensively sick, to a center that would still be willing to perform a transplant for someone with B. cepacia, with a paltry chance for survival in its aftermath to boot, I had decided to cut my losses, admit defeat and just wait out the end.
That all changed in May, 2004, when I met her on the Internet and instantly fell in love. Despite our distance--well over 3000 miles, as I was a New Yorker, and she was from Oregon--the feeling turned out to be mutual, and we saw each other for the first time--in real life--in September. After the subsequent months of pining and waiting, she moved in with me, and we've been permanently together since January. In May, we moved to North Carolina, leaving my parents behind, and I'm engaged in a battle to be put on the lung transplant waiting list at UNC as I write this. (Medically, I would already be on the list, but my health coverage is refusing to pay for it at the moment.)
The poem is a stream-of-consciousness narrative, reflecting my thoughts and feelings in snapshots over several months, from the time I found out--to my horror--that I did, indeed, have B. cepacia (after a false negative PCR test suggested I didn't, leaving me thinking I'd been misdiagnosed for years), to--what I hope is--looking back from the future and thinking of CF as a distant, bad memory. <img src="i/expressions/face-icon-small-happy.gif" border="0">
Without further ado...
<b>Requiem for a Malady</b>
<i>Sitting idly, waiting,
Peeking at the door.
TV loudly grating;
Staring at the floor.
Wait is over. Going
To a smaller room.
Being nervous, knowing,
Sensing certain doom.
Men and women, walking,
Dressed in dazzling white.
Not some angels; talking,
Scared of being right.
Lab tests causing worry:
Traces of a plague.
"Here's the whole sad story,
No more being vague."
"B. cepacia..." Shocking!
It's a horrid germ.
You're a dead man, walking.
(Soon to be infirm?)
Lung-infesting terror,
Feeding off their bile.
Sadly, not an error;
It's a germ most vile.
"It need not be deadly,"
Quips the doctor, sinking.
Yet, it kills you, steadily;
You're too shocked for thinking!
Stats and studies, mocking,
Offer little hope:
It's more wicked rocking
Of that fatal slope.
Drugs won't faze it, sadly;
Transplant centers balk...
Storming off, so madly,
Going for a walk;
Silent, pale, confused,
Exiting the place,
You feel glum, infused
With a calm, blank face.
Contemplating, thinking,
Planning to give up,
Being merry, drinking
(Living 'til you drop?)
Finding her, and falling...
Being hypnotized.
Getting numbers, calling
Hearing her surprise...
Sinful feelings, smiles,
Thoughts of her, undressing...
Through three thousand miles,
Dreams of her caressing;
Hinting at your feelings,
Dropping subtle clues...
Finding likewise kneelings,
Picking up on cues;
Flirting, longing, dreaming,
Wishing on the stars.
Plotting, checking, scheming,
Luring, from afar;
Meeting her, embracing;
Taking her back home...
Heart and spirits racing:
Nevermore alone?
Watching movies, dancing,
Dining, and much more...
(Tons more such romancing
Hopefully in store!)
Looking at her, sadly,
Finally admitting
That you want her badly,
Fates be so permitting;
That you'd reign supreme
With her at your side.
That you had a dream...
And awoke, wide-eyed.
That you'd love to hold her,
Tenderly and tight,
'Til it was all over,
'Til that final night;
Only now, you wouldn't
Shrug, give up and die.
After her, you couldn't;
Anything, you'd try!
No more gently going
Into that dark night.
Will, resolve all growing,
With her help, you'd fight;
Such good times entice,
Should a transplant stick...
And if not, still nice;
Be they shorter, sick.
Heaven would exist
With her by your side.
With her, you'd persist;
Thus, she turns the tide...
"Transplants still done where?"
You search out a place.
Hard to find, but there;
It's a deadly race!
Challenges abound,
Raging on all fronts.
Yet, solutions found,
You pull wild stunts
Hanging onto life,
Battling HMOs,
And, through setbacks rife,
Reeling with the blows,
Racing against time,
Braving all the odds,
Moving, coughing slime,
Joking of the gods
Playing with you, chuckling,
Plotting evil twists.
But your will's not buckling
(Like this chance you'd miss!)
Sure, those fears are strong
(No rose-colored lies):
With so much that's wrong,
Living might surprise.
But the dream is vivid,
Overwhelming fears.
Both of you are livid,
Fighting back the tears.
You have cause to smile,
That decision made.
It'll be a while
'Til the dues are paid.
Being with her--joy--
Seizing days and years;
Loving, acting coy,
Beating more than fears...
Thinking of her, grinning
Staying optimistic;
Persevering, winning;
Beating big 'ole Cystic...?</i>
That all changed in May, 2004, when I met her on the Internet and instantly fell in love. Despite our distance--well over 3000 miles, as I was a New Yorker, and she was from Oregon--the feeling turned out to be mutual, and we saw each other for the first time--in real life--in September. After the subsequent months of pining and waiting, she moved in with me, and we've been permanently together since January. In May, we moved to North Carolina, leaving my parents behind, and I'm engaged in a battle to be put on the lung transplant waiting list at UNC as I write this. (Medically, I would already be on the list, but my health coverage is refusing to pay for it at the moment.)
The poem is a stream-of-consciousness narrative, reflecting my thoughts and feelings in snapshots over several months, from the time I found out--to my horror--that I did, indeed, have B. cepacia (after a false negative PCR test suggested I didn't, leaving me thinking I'd been misdiagnosed for years), to--what I hope is--looking back from the future and thinking of CF as a distant, bad memory. <img src="i/expressions/face-icon-small-happy.gif" border="0">
Without further ado...
<b>Requiem for a Malady</b>
<i>Sitting idly, waiting,
Peeking at the door.
TV loudly grating;
Staring at the floor.
Wait is over. Going
To a smaller room.
Being nervous, knowing,
Sensing certain doom.
Men and women, walking,
Dressed in dazzling white.
Not some angels; talking,
Scared of being right.
Lab tests causing worry:
Traces of a plague.
"Here's the whole sad story,
No more being vague."
"B. cepacia..." Shocking!
It's a horrid germ.
You're a dead man, walking.
(Soon to be infirm?)
Lung-infesting terror,
Feeding off their bile.
Sadly, not an error;
It's a germ most vile.
"It need not be deadly,"
Quips the doctor, sinking.
Yet, it kills you, steadily;
You're too shocked for thinking!
Stats and studies, mocking,
Offer little hope:
It's more wicked rocking
Of that fatal slope.
Drugs won't faze it, sadly;
Transplant centers balk...
Storming off, so madly,
Going for a walk;
Silent, pale, confused,
Exiting the place,
You feel glum, infused
With a calm, blank face.
Contemplating, thinking,
Planning to give up,
Being merry, drinking
(Living 'til you drop?)
Finding her, and falling...
Being hypnotized.
Getting numbers, calling
Hearing her surprise...
Sinful feelings, smiles,
Thoughts of her, undressing...
Through three thousand miles,
Dreams of her caressing;
Hinting at your feelings,
Dropping subtle clues...
Finding likewise kneelings,
Picking up on cues;
Flirting, longing, dreaming,
Wishing on the stars.
Plotting, checking, scheming,
Luring, from afar;
Meeting her, embracing;
Taking her back home...
Heart and spirits racing:
Nevermore alone?
Watching movies, dancing,
Dining, and much more...
(Tons more such romancing
Hopefully in store!)
Looking at her, sadly,
Finally admitting
That you want her badly,
Fates be so permitting;
That you'd reign supreme
With her at your side.
That you had a dream...
And awoke, wide-eyed.
That you'd love to hold her,
Tenderly and tight,
'Til it was all over,
'Til that final night;
Only now, you wouldn't
Shrug, give up and die.
After her, you couldn't;
Anything, you'd try!
No more gently going
Into that dark night.
Will, resolve all growing,
With her help, you'd fight;
Such good times entice,
Should a transplant stick...
And if not, still nice;
Be they shorter, sick.
Heaven would exist
With her by your side.
With her, you'd persist;
Thus, she turns the tide...
"Transplants still done where?"
You search out a place.
Hard to find, but there;
It's a deadly race!
Challenges abound,
Raging on all fronts.
Yet, solutions found,
You pull wild stunts
Hanging onto life,
Battling HMOs,
And, through setbacks rife,
Reeling with the blows,
Racing against time,
Braving all the odds,
Moving, coughing slime,
Joking of the gods
Playing with you, chuckling,
Plotting evil twists.
But your will's not buckling
(Like this chance you'd miss!)
Sure, those fears are strong
(No rose-colored lies):
With so much that's wrong,
Living might surprise.
But the dream is vivid,
Overwhelming fears.
Both of you are livid,
Fighting back the tears.
You have cause to smile,
That decision made.
It'll be a while
'Til the dues are paid.
Being with her--joy--
Seizing days and years;
Loving, acting coy,
Beating more than fears...
Thinking of her, grinning
Staying optimistic;
Persevering, winning;
Beating big 'ole Cystic...?</i>