there's a quote i came across recently, that i will have to paraphrase..."the really happy person is the one who can enjoy the scenery when on a detour..."
for me, deeply resonant. i used to be the kind of person who needed a plan, a list and the inevitable meltdown would ensue when derailed. but after 30 years of chronic illness, you get it. you have no control. and maybe that's not such a bad thing after all. some of our greatest adventures are borne from messy, infuriating sidetracking...
one particular event radiates in my mind. kevin and i were tackling a virginal route back from palm springs; back to the basset ranch where our sassy-ass basset, daisy, awaited. she had undoubtedly terrorized the other hounds with a turned up snout, a constant view of her delightfully enormous booty, and frequent growls through under bites of superiority..."i'm not a shelter dog...! i have a home...!"
besotted by these unfamiliar desert vistas, we cruised toward the oddly, yet charmingly named "pearblossom" highway, and were no doubt deeply immersed in conversation...not surprisingly, we missed the 15 turnoff. as the freeway yielded into one lane, The established superseded by gritty, unadorned shacks and equine sightings more frequent than any car; after a few sidelong glances, we shortly realized we were lost, lost, lost...
thursday morning i started awake to an unfamiliar tone in my husband's voice. exuding pain and panic, i was awake within a quarter of a second.
[as an aside, fabulous to know my maternal instincts are alive and kicking, despite my only babies having been covered in fur...]
for a man i've known for 20 years, has maybe been in bed 4 times with a cold for barely a day, and who abhors pain killers, his abdominal clutching and moaning was unfamiliar territory. and terrifying. i kicked it into high gear with a hot water bottle, mint tea, even a muscle relaxer with a giant glass of water. but, within minutes i was insisting hospital, and it wasn't too much longer before he conceded.
and that's when i knew something was seriously wrong.
[and my glass slipper dropped...]
cedars is an hour away, and we're about as sick of that place as "subway" on a road trip; so the lesser of 2 sickies (that being me) plunked down and whizzed over to burbank's st. joseph's hospital. perhaps "whiz" is a slight exaggeration for a driver who clutches the steering wheel between her paws until throbbing red. sits ramrod straight as if strapped to a gurney. glasses so far up her nose, it leaves forehead imprints. and pulled her seat so far forward that her knocking knees could have been doing the navigating...such a ridiculous sight, that despite the pain we both were feeling, a wee titter managed to escaped our lips as i pulled into emergency.
and as kevin underwent the protocol of insurance, data entry, hospital gown, blood draw, IV and administering of dilaudid, i tried and i tried to jam that other slipper upon my foot.
[i wanted to save him today.]
"waiting for the other shoe to drop". and it had. but it was meant to. so i could feel all the fear and uncertainty my beloved has endured for well over 3 years now. to see him in pain. to worry about the impending diagnosis. to feel completely and desperately helpless.
with spousal approval, i am allowed to reveal that kevin has an ulcer. there are additional nether region issues not currently up for discussion, but this is serious enough. he is now on 3 medications and he will have to get an endoscopy or laparoscopy.
[anger escalating up through my chest, spilling out of my ears, and all over the floor that i tiptoe upon...]
i tiptoe throughout the day, attempting to dodge pain, depression and confusion over when this cinderella's fantasy transformed back into a big, fat, rotting pumpkin.
and now my prince is losing rank...
there is another cinematic gem that i've been pondering of late. in ''the hours", meryl streep's character speaks to those brief, transient minutes as the early morning unfolds. in those pristine moments, her character experiences true happiness. the eyeblinks in which anything seems possible before her mundane routine settles in; harshly stripping away promise like a band aid. left raw and aching, a new day begins and her pipe dream vaporizes with the morning haze.
for me, "the hours" was a film attempting to depict the necessity to focus on the mundane, routine details of life; therby dodging the depth of pain that can otherwise swallow us whole. i think we are kidding ourselves if we can't see some truth in that...
[but perhaps these are just the musings of someone trapped in the hell of chronic illness.]
once upon a time, my dear friend, n, noted that with unemployment comes as much stress as a job you loathe. coupled with a fractured body i don't understand, i feel like little red riding hood lost in the woods...vague purpose in clutching my basket of goodies, searching for my grandmother's haven of love and plodding along with the focus of the disoriented...
[mmm...now wondering if running into the wolf would make life more interesting?...]
when dawn breaks, i turn over and pray for more sleep. and when i simply can't sleep any longer, my eyes reluctantly flicker open and for a brief instant i swim in a beautiful respite. i float in a sea of calm. no tremors. no headache. and no exhaustion. gazing at the ceiling, i silently beg (and occasionally vocalize) for this status quo to linger. just a little bit longer...
[return to your seats. return to reality.]
pebbles of stone, not unlike the ones woolf ladened her pockets with, form within my gut and circulate like cancer throughout my emotional conduits...clogging any possibility of relief...tremors mushroom, a vice of discomfort orbits my head, and fatigued stretches married to my throbbing incision hint at the full-blown sizzling, charged day ahead.
with a swing of trembling gams over the edge of my bed, my day begins. hands that shake as i grip my decaf tea. a two-handed grip in any attempt to sign my name, and a palm indelibly spread-eagled across my solar plexus.
[be still my quivering chest. purify my aching head. unburden my melancholy heart.]
this next segment is probably as interesting as being crammed into a stuffy, traffic school classroom; but here's the official renal state of affairs before i return to transplant clinic on the 2nd of august.
-creatinine: 1.3 (great)
-blood pressure: low, and without meds (fantastic)
-see you in two weeks!
put physicians on prograf for 2 weeks and let's watch them flip the figurative cartwheels...
[patient frustration should be the next cause. the next fundraiser. the next charity marathon. the next ribbon gracing your lapel. i nominate the color black.]
i live with myself 24/7. and the physicians do not. and numbers on a page do not dictate quality of life.
so tomorrow, i visit my pain management doctor, dr.far. anything to help with the migraines and incisional pain.
and on august the 4th, i visit my neurologist, dr. andiman. anything to help with my tremors, obvious depression and non-narcotic alternative to the migraines.
but prograf is the evil stepmother. i am trying; but i have to try just a little bit longer. prograf is the tiara of caplets crowning this princess. but how do you make friends with something that has the best interests of your kidney; but not the best interests of your heart?
[oh, how i miss cyclosporine.]
1) cyclosporine: immunosuppressive #1 was my fairy godmother for a long, long time. it kept my mother's kidney chugging for over 23 years. i felt an affinity with her. it will not be this kidney's friend. it caused the rejection.
2) prograf: immunosuppressive #2 is the drug i am currently on, and the one that causes all these insane side effects. the horrible irony is that my creatinine is 1.3. (0.5-1.4) and my blood pressure is fantastic, even without blood pressure medication. but the side effects are unbearable, so when i return to transplant clinic on august the 2nd, i will spread this issue far and wide across the exam room, like a crazy game of twister; with the objective of seeking physical balance. i simply can't live this way...
3) belatacept: immunosuppressive #3 is the barely FDA approved drug that i am hesitant to try. just recently discussed, it increases risk of rejection, risk of lymphoma, a greater chance at developing epstein-barr and there's very little substantial research. i am not ready to tread this path. but, terrified or not, it may be my only option.
cinderella wore a big poufy dress, one glass slipper, and sprinted back to a world where she was abused and ignored, but would eventually be saved by her prince charming.
so maybe i was wrong.
perhaps there is happiness to be found along this uninvited detour.
[i can help. i can listen. i can support.]
with 2 glass slippers, i will tiptoe through the next few weeks on prograf, but i will also stand tall beside my prince charming; and together we'll doggedly steer through his detour. so i jammed it back on my foot, not so he can save me...
