The first 3 days

The beginning

My first thought after 7+ hours of surgery?  "I'm alive. Take that, hah!"

My second thought?  "Fuck, I can't move my body, son-of-a-bitch, what the hell, someone help me NOW."

Yeah, the inability to move my legs and arms had managed to put me in a total freak-out.  The doctor came over, ran some tests, and mumbled something about "swelling."  She left, and another doctor came to my bedside.  She looked about 12 years old, and her head barely reached the top of the recovery bed.  "Remember me?" she asked. "I was the neurologist who watched your nerves during surgery."

My intelligent, productive, helpful response?

"Really?  Last I checked, I was ASLEEP during surgery.  I don't remember a damn thing."

(Have I mentioned the "sarcastic bitch when scared and in pain" personality trait?  I blame genetics, of course. Just look at my sisters.)

This sweet, young,  adorable pixie actually GIGGLED, when I spoke to her. I was not being funny. I would have lifted my arms and moved my fingers around her throat, if I had any motor function left in my body.  She is one lucky pixie.

"Everything is fine" (giggle) "Your nerves checked out fine during surgery" (giggle, giggle)  "I'm sure this is just swelling or spinal cord shock" (giggle)  "Feeling will return soon, within a couple of days" (giggle, wave, run for her frackin life)

24 hours later, the pixie was vindicated.  Somewhat.  I could move my arms and legs.  Still weak, can't walk, can't feel a damn thing-- and no way can I eat solid food.  Choke, choke, choke,  But I can move.  The nurse keeps staring at me and laughing.  Do you think she finds my flailing leg pushing the food cart funny?  Probably.  I find it funny, too.

Wish I were a better person.  Wish I was happy to be alive, to have some motor functions (damn left hand still won't move, and my toes suck because they won't listen to my brain).  I'm scribbling on paper towels, only 5-6 words at a time, using my right hand, the only one that works, the one I never used to use. I need to start my story, even though this situation SUCKS.  (Editor's note: "sucks" was underlined five times, with many exclamation marks-- I admit, a bit overly dramatic...)

This was found on the margins of a Vogue magazine, written later that night:
fuck, pain.  pain, pain, pain.  the numbness has left my shoulders, and my entire body is on fire.  electrical jolts in my fingers, and muscle spasms are in my neck, arms, hands, butt, abdomen and chest.  there are "creepy crawly" bugs running under my skin. (Editor's note:  I knew there were no  bugs crawling on my skin.  I just called the feeling "creepy crawly bugs" because it felt like something was climbing across my shoulders, arms, legs and neck. It's a weird type of nerve pain.)  i almost wish the dead and numb feet, legs and hands would spread to the rest of my body.  i miss the pre-surgery days of numbness.  this pain sucks.  the seizures won't stop.  make it all go away.

Day 2
OMG, OMG, OMG. The most gorgeous human being has walked into my room.  Brown skin, glorious smile, butterscotch eyes. Yum. Yep, my hormones are fully functional, too bad I feel like a floppy porpoise and can't get laid. Orgasms are on the no-no list, and why bother with sex if...?  (Editor's note: orgasms can cause autonomic dysreflexia)  Damn, he's hot.  Damn, he's a doctor.  Oh, double-damn-- he's head of the fucking department, married with many kids. No harm in lusting after someone though, right?  Oh wait.  He thinks I'm a good candidate for rehab in Vallejo.  Awesome news.  Best program in the state, maybe the country.  They'll teach me to use my legs, arms, live life.  They'll find a way to control the autonomic dysreflexia. How cool is that?  Damn though, the hormones have turned me into a giggling 14-year-old that will agree to anything, right now.  I am even writing like a hormonally-crazed adolescent from the 80s.  OMG? Cool?  Fur shur?  Where do those words come from?  My mouth?  YECH.  I suspect I am channeling that silly pixie neurologist.

Day 3
son of a bitch. i made it to vallejo rehab, but i have no idea what's going on. the paramedics put me on my new bed and left. my family is here.  the doctor won't talk to me.  he talks, but it's to confirm info in my chart.  he doesn't listen. i try to tell him that i have other diseases, serious things wrong that will impact my recovery. the nurses said my seizures are worse, daily. muscle spasms are horrific. i'm starting a small fever, which could become something bad. very bad, very fast. he refuses to hear me.  i get so frustrated that i tell him to call and consult with my pcp in san francisco, with my autoimmune doc, with my neurologist.  he refuses. "i treat spinal cord injuries, that's all i need to know"  he strips me naked in front of my sister and parents, and i ask them to leave. they don't need to see me poked and prodded.  they already had to hear too much about my life, my health, the things i did to hide my illness from them before surgery. this doctor won't listen. he doesn't know why i asked my family to leave. he is holding a safety pin and sticking it into my body parts, causing spots of blood on the sheets. poking my anus. i feel nothing.  i am freaking out.  why don't i feel something, anything??? 

my family doesn't need to hear me scream.

(later, scribbled on the inside of a bag, hard to decipher some words)
it is 3 am and i can't stop crying. the doc told me i should be able to deal with more pain, that i should not ask for meds until i was an 8 out of 10. that's barely able to move due to pain.  i ask for meds when i am at a 5 or 6, because i know it will get worse.  i tell him that my autoimmune disease causes muscle and chest pain, but he doesn't believe me, he doesn't understand,  he goes ahead and lowers the amount of pain meds prescribed by my PCP and surgeon, and HE DOESN'T TELL ME.  i have to hear it from the nite nurse.  she makes me feel weak, mocks my pain, says i am too sensitive to pain.  i have to beg for an extra pain pill.  i am begging like a fuckin addict, but i can't move my shoulders and arms because the muscle spasms won't stop.  i'm scared.  the nurses walk away. no one will talk to me, tell me what's happening, what to expect in the hospital.  not knowing, not having a schedule? my worst nightmare.  is a little compassion, comfort too much to ask for? they agree that the doctor is challenging, and tell me to talk to him.  they refuse to ask the doctor on call to change my pain meds back to my ORIGINAL DOSAGE. at least they should let me know if someone will help me get to class, dress me, feed me breakfast in the morning.  they've already forgotten to feed me lunch and dinner today, and they made fun of me when i tried to open the apple sauce, to take my ever-changing meds.  i can't use my fingers, no strength, barely hold this pen, even with breaks.  tried using my teeth. ouch.  okay, it was kinda funny, and i had to laugh at the silliness.  they finally helped me when they saw i couldn't do it. still, i can't stop crying tonight. damn. this is not what i expected, wanted, dreamed about...so sad...so hurt...this sucks.

ZEN