surreal

it's been mostly a surreal time. going from the never-enough-time vigors of my first year of law school to this so fast. it's hard to make sense of it. one day i am going to wake up and it's going to hit me. a blood infection? REALLY? how did that happen? how many possibly fatal events must one person go through in a life time? i keep thinking experience will make the times in the hospital more palatable. but that's not true. i only hate it more.

spending a week trapped in a dark room tethered to an iv stand not sleeping because of the every 6 hour iv antibiotics and the 5 am blood draws and the dying woman in the next bed yelling hail marys to a woman named betty who is never there. and the interns and medical students and residents during rounds spouting such misinformation that at times i can't help but HAVE to correct them - both because their arrogance begs of it but also for the safety of their future patients.

i passed my time by asking questions i knew they couldn't answer and then answering them for them before requesting the attendee. and it is scary when the person responsible for your life doesn't even understand your heart disease.

(Shut Up Doctors. If you DON'T know the ANSWER Don't Just Make it Up. Are you Really So Arrogant/Ignorant that you Think You're Rudimentary Understanding of my Many Complex Health Problems is Better Than My Understanding? I Remember Your Faces and I Remember Your Misktakes and they Do MATTER. So Just SHUT THE FUCK UP if You Don't Understand My Disease. I Don't Need to Teach You When I am Laying in a Bed Trying to Fight an Infection that could Kill Me).

Usually the Attendee is the ONLY ONE who seems to understand anything.

and coming home was terrifying. visiting nurses, that creepy picc line, monitoring my temperature four times a day, feeling acutely aware of my partially collapsed lung every time my breath caught walking to the bathroom.

and the iv antibiotics. they weren't easy. the meds needed to be mixed, lines had to be changed, there was flushing and setting the speed of the infusion. and every thing really mattered. any mistake would have been serious. and it was every six hours. which was every 5 hours because each infusion took an hour. and that makes for very little sleep.

i would hold the connector out so joe could wipe it with alcohol swabs and i would watch in horror as air bubbles snuck their way up the tubing from god knows where and many times i spent the hour crying and begging and telling joe i don't want to DO THIS anymore. and he would say i know, i know but he would do it anyway because he had to. because those antibiotics would save my life.

and we took alot of naps. and drives. and we ate a lot of ramen.

and that was last month. things are normal now. but that's a weird thing to bounce back from. and i am still waiting for my leg to decide it's ready to walk again. and it is christmas and we have the most beautiful tree. and i am baking. and writing cards. and holding out hope for those miracles that everyone promises when the year ends and begins again.

i would trade any of you for him.

my life is not the same as it was before he died. there is something about each day that feels gritty and i can't wash it off my skin. it has been two years since i have heard his voice. two years since i have known that kind of love. two years since i have had something i could count on for real and forever. ivan was for real. ivan was forever.

this is something else.

like even after all this time sometimes my breath catches - can it be. can these things die?

when people take parts of themselves they take part of you.

the air has grown thin. i find myself reaching above. i find myself clawing the sheets at night.

it is hard for me to make peace with this because i am so furious i can't sleep or breath.

i can't sleep or breath.

it's just that

i miss him. it's been nearly two years and i just miss him so much. ivan called back at two in the morning and left for cigarettes only to return four hours later and we made a vow to forever cheat on our spouses for eachother. and in some ways i guess we have kept that true. and it's still shocking sometimes to remember he is dead - so much time is spent walking with ghosts.

universe...

fuck off.

Law School and Fevers

I have the chills but it's always better and I wouldn't mind spending all of my days here listening to the crickets (is that what they are peeping outside my window) and the chairs are soft and my head is heavy and the reading never ends but i would rather not stop so we make mac and cheese and eat it watching documentaries about war crimes and he tells the stories that i intend to always believe.

Grown Up

I am adult now. This is my life. This man. This dog. This house.


And instead of giving parts of myself up. Instead of holding parts of myself hostage. Now, and here,
I feel free. Like together we can do anything. Like with this I can be the things I have been meaning so long to be.

journey

i mean everyone says it's a journey right? it's not surgery and iv's and prescription drugs and cat scans and pet scans and mri's. no. it's a journey. and of course that implies that at the end you will be somewhere. and of course with these kinds of things that is not always true.

and i am not in the mood for the pharmacy soft rock and when that blue cross girl told me she was trying to help me i cut her off no you are not.

people have all kinds of well meaning or mean meaning advice. how easy it must be to live your life like you are healthy and going to live forever when you are those things. could someone tell me though how do i pretend i can walk when i can't walk. am i supposed to put on jogging shoes and then drag my leg down the trail on my crutches. i mean i'm not giving up but it doesn't help me to have everyone pretend that nothing has changed.

things have changed. my leg shrunk. i have vertigo. don't ask me if my day was good if i tell you i have been up all night vomiting. i am holding on i am finding my peace but that doesn't mean that having a lesion on my spinal cord is pleasant.

there is a clarity. there is a tangibility. there is an acceptance.

there is the realization that my days in this world may or may not be as long as i expected. and the important things can't be planned for anyway.

and i have had a good run. and i hope to keep running. but i open to whatever i have to take on next. because i have to be.