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.

Joy

It is not easy watching the slow decline of my leg. I was shocked to see my legs in the reflection of a store window. This is no longer something I can just feel now you can see clearly see it. I am not vain about it - but it surprised me. Like there is no denying that this is real.

And I feel hopeful. Since my accident years ago I don't find myself grounded by concrete plans. I have long since learned about the unpredictability of life and that doesn't scare me. I am working hard for my balance and little by little I am finding it.

And things are different. And nothing is set in stone. And I am scared as all shit of neurosurgery or ending up in a wheelchair but there is nothing I can do but keep on going as I have. I am strong for a handicapped girl.

And in that subtle shift that happens when your mortality is brought before you, I have found my way back to that joy I remember from the first year after my accident. That quiet awareness of the grace in the every day.

I can not tell you how content I feel watering my little garden every day. Kneeling in the grass and picking the weeds and trimming the plants with Jenckes by my side. Or the fufillment that Joe and share kayaking to the little island we found on the pond by our house. The peace that comes as we lay in the field and laugh as we watch birds overhead and make faces out of the clouds. And the enjoyment I get wondering through the library with the moms and the old people finding cookbooks and novels and looking through newspapers.

There is something special in the reminders that illness brings.

I feel fortunate to know the world in the way that I do because of the trials my health has put me through.

Last night we went for a sunset kayak ride to cool off from the heat of the day. As we pulled onto the shore of our little green island there was a rustle in the bushes and a beautiful baby deer was standing right in front of us.

There is magic in this world all around us.

dear media,

i am so bored with the million ways you tell me i can get rid of my stretchmarks or lose more weight or make my boobs perkier or my face prettier or my wrinkles go away, how i should eat yogurt and gum instead of desserts and filling food and then your "reality stars" that teach me to be wary of women as they will sleep with my boyfriend or take him away and the glossy photographs that remind me that my real body can never hold up to the airbrushed/surgically made ones that america seems to demand now.

let's not get distracted from the real things. like the lack of affordable childcare that robs us of careers and the exploitation of women in the sex trade and in every theater and our daughters giving things up because they want to be loved, and all these fathers who leave and the 1 in 3 women who will be sexually abused or raped in their lifetime (maybe it was you).

or how about we talk about the fact that women still make 77 cents for every dollar a man makes. even though more women are now earning graduate level degrees.

we have real problems, and the curves of our bodies (the curves that allow our bodies to carry life inside of them) are not it.

ladies, we gotta stick together. we can't get anywhere acting all mean to eachother all the time...

menopause SUCKS

well friends, i am not gonna cushion this. menopause sucks. my therapist says to transition easily you need to allow yourself to let go and "ride the wave" but it's a wave of shit and my phases are all messed up because i am supposed to be enjoying the rich sex life that age and experience and estrogen give you in your thirties not applying cream to my cooch and laying sleepless in bed feeling so electric i want to crawl out of my skin.

getting through this bull shit with my leg has taken every single coping mechanism i have in the bag. this medication takes them away from me. and it's hard to get through an illness when you have not even a string to hold on to.

so what they say is true my lady friends. things that used to make me feel annoyed make me feel infuriated. i can't sleep. my skin, my body, my privates are dry. i can't eat a warm meal with out breaking out into a sweat and turning bright red (hot flashes are so fun). and it's always pleasant to wake up at 3 am in clothes that are so wet you feel like you just took a shower in your clothes. and you are hot but also cold.

the doctors say this is worse than the real deal since mine was chemically brought on over night and the real deal comes over over 10 years.

i hope that's true. because i seriously don't know if i can do even another week of this let alone six weeks.

lll

day: 67 of mono.

there has to be a better way.

i think i need to leave my job.

stop

stop following me around in these circles. don't tell me about how it gets better. don't pretend that not having to jog makes it okay to not have two working legs.

it is spring time and i miss little things like being able to walk these streets. my bike. the run.

the doctors are concerned and there don't seem to be any easy answers. just drugs with miserable side effects (like menopause - it's a long story) and surgeries that include too many surgeons. too many hands.

and again and again i need you and again and again you are not there.

and i would rather sit alone with this. (sit because i can't stand. if it were up to me i would do everything in a run).

and it's not up to me. and i am not frida kahlo.

but i just may end up being the one who leaves before she knows what she has done.

and really

there is no guarantee that any of us will survive.

that thing before.

i am not going to try to convince you.
i am not going to bang my head against your wall.
i don't care what is true.

there is sunshine and a list of lies.

there is rosemary bread and a bag of dried peas.

i have let bygones be and i have turned the other cheek and
i do what i say i am not going to do
'cause fuck i am only human.

i have tried but i can't stop being me.

promise me your curses and i will close my eyes.

i am trying

i am trying best i can.

but it is hard to work at an office full of stairs when you have a dead leg and mono.

i am more than tired. i am more than exhausted. i have spent months in bed with visiting nurses and attendants to clean me. i have spent weeks in the hospital on heart monitors watching day time television on a tiny tv. i have been sick before.

but this is hard.

this sunday is the ms walk. i have been doing it for years. this year i will be watching from the finish line with all the other handicapped people. and no one is walking for my disease. and there is no power in being left behind.

why oh why can't i...

some days i remember that night a couple weeks before ivan took his life. i called him and he didn't answer but instead texted me that he really wanted to talk but he had friends over. he said he would try to get them too leave. he texted me at 2 am that they were gone and asked me to call him. i heard the phone, woke up, and told him i was too tired. i left for europe a couple days later and we didn't speak again - just a couple of texts. he stopped taking my calls.

and all i can think is that i had a chance. he gave me a chance.

and i blew it.

and it feels like suffocating every time i think of it. these things are no ones fault but maybe it was a little bit mine.

hell

the vitamin d helps and the cozy house i come home to and the arms waiting there for me. and i am buried. and today it's going to snow and i have been cold since i woke up. and time is building bridges and valleys between ivan and me that used to be steps and streams. month after year and i don't miss him any less he has just gotten farther away than i ever wanted him to be.

i am adjusting to my new reality. i am breathing again. i am learning to grocery shop with a crutch and a cart and to not cry when i see my car waiting for me in that handicapped spot. i am trying to hold onto hope but i am trying to be realistic. i am trying to not be afraid. i am trying to not think of the next test til the next test comes. i am trying to see the hospital halls as full of life of the grey's anatomy dating/sex/human kind instead of the prison it has felt like to me all these years.

people always talk about living in the present like it's a good thing. but that terror that leaves you blank to everything outside of you. living in that moment. having that be your present.

it is hell.

days

yesterday was the most amazing moon. and we sat by a fire under blankets and watched the sky and listened to the fire cracking the wood and it was perfect. all week i had a fever so i was laying low. no office stairs. no running around. my leg felt normal. so i started small back to my old old physical therapy exercises from back before when i was first recovering. and my leg felt normal. and so today i did a little more. nothing big. the tree pose was all. and now my foot is numb and my leg hurts so bad i can hardly sit still again.

i remember in those early days the doctor told me that in recovery there are good days and bad.

it's easier to push forward when you stop taking score.

Holding Hands

& winter rain that remembers spring
& notecards with scalloped red edges &
long sleeves with short boots.

you weren't here but i knew you too.

waiting

waiting is hard. today my leg was a little stronger. i could walk around the house without my crutch and didn't need my pain meds til nearly 9 pm. we went out to get some sun and i am not used to going out like this yet. people are so rude. i mean what kind of ass hole knocks into a person on a crutch? apparently alot of people. it's hard enough for me to walk without people knocking me over. do people think this is easy? do they get that if you need a crutch it's probably hard for you to get around? i cried in the parking lot and joe took me home. it's better there. i almost feel normal when he is next to me on the couch and we are watching some old 90210 episode on netflix.

if only i could just stay here and not leave.

the truth

the truth is that it's hard for me to hear about how hard the life growing in your belly is slowing you down when this disease in my veins is taking away my leg right before my eyes and there is not one thing i can do about it. the truth is i can't sleep at night because it feels like there are a hundred firecrackers going of right under my feet and it hurts more than anything i have ever known and yet i am also relieved because more of the time i can't feel my foot at all and that is a terrifying feeling.

i am full of terror.

i can hardly breath. or listen. or give a shit about charlie sheen or traffic jams or your hangover.

this is too much. i have had enough.

this is too much.

and i am not okay. and i know you need me to lie to you and say i am because that is what i always say. and all that other stuff all those other worse days they just keep getting better and sometimes i wonder if maybe i was meant to die on that day and if maybe this is how fate evens the score.

mri

she is listening to me but pointing at them. i am watching things as they fall down.

i am listening to the sounds that ivan is receiving.

joe is behind me but i move so fast. spiral staircase and the noise coming out of my throat is carrying me. i can't let her fall.

the loud crashes. mri sounds. pink lights when i close my eyes. i think it was a panic attack. i don't think the machine was really burning my back.

right after the lady in the scrubs moved my bed into the tube she said 'what a way to go. how did she die? she sat on a wine glass. can you imagine?'

what i want to say is 'i have struggled for 7 years to stop imagining just that.' instead i say nothing.

finding my footing

the last couple weeks have been hell for me. my leg is shit. i can hardly walk. i left the doctors with a gimpy crutch prescription and a handicapped placard. i feel so worn down. and maybe i have spent so much of my post-accident life fighting for each step forward that i forgot to take the time for acceptance.

for breathing.

because my leg is bad. and it's only going to get worse. and i don't know how i will ever be able to carry my own child in my arms. hell i don't know how i could carry a baby in my belly. all that extra weight. all those details that never occurred to me in the trauma of surviving.

i have survived.

and now i have to learn to live with this.

and some days it breaks my heart. some days i wonder why i have to go through all this. some days i don't feel "lucky to be alive".

it takes a village.

so i am looking for mine.


i am tired of always being your cheerleader.

today,
i need you to cheer for me.

stem cells

it didn't occur to me til i was falling asleep last night that i do things like the ms walk and the liver walk for me as much as i do them for my parents. it is so moving looking around at the huge groups of families and co-workers and friends who all know something about living with that disease we are walking for. i realize i wish i had that. wish i had a group or even a doctor who knew that much about what i had, what would come next and what i had been through. i wish there was a name for the thing i am fighting. i wish there was a pamphlet i could read. i wish there was some hope beyond stemcell research or the idea that through all that ms and diabetes research going on out there maybe they will find a way to fix my nerve injuries too.

my leg feels like there are a million tiny ants crawling in it. my feet itch in the deepest way. and burn. and my thigh goes numb. and i can't feel my leg except for pain. it's unrelenting. it's dead weight.

i am on crutches again. i am considering buying a wheelchair. i don't want to miss things because my leg is too weak and my arms are too sore to carry me.

you never

dear dead beat friends & family,
the ones who "felt bad" for josh, or didn't believe/trust how hard i tried and pleaded with him to make things work, and those of you who were too consumed with your own insecurity about your own boyfriends/girlfriends to sit with me, i want you to know:

i don't forgive you.

i thought i would feel appeased when you apologized after finding he stepped out our door into the bed of the first girl he met and stayed there (really. she was his neighbor). or when it turned out he moved in with her before we were even divorced. i thought that the ways he proved his disregard and inattention to our relationship would give me peace.

and it did. and the friends who were there. the family. the love i was able to find when i finally took the time to ask myself what i needed. i've built a home that has feet that can actually support me for the first time ever.

there is a reason i can't muster the energy to take your calls or to meet you for a cup of coffee down the street.

i don't forgive you.

and i don't think i will. i don't think i even want to.

i learned something from the hours i spent making cupcakes for your parties and discussing the merits of dating married men or men who will never seem to commit to really being with you (things i would never do but never judged you for). i learned that the friends i want to keep are more like me and nothing like you.

nothing's simple

it's like time travel. that time you spend wondering what you should have been. or wondering if she is better than you were. or when you walk down the street and you can't see anything but your hands crashing down on top of him. that anger that swells.

you let him use you. he used you for six years.
you believed him. because? what was wrong with you?

nobody changes that fast. no one believes in jesus one day and nothing the next. no one comes from that family unscathed. how could you? who can be normal when their mother tells them constantly how difficult they were as a boy? who tied him to a playpen in the back yard.

and pray tell who marries that boy when he is grown?

what was wrong with me?

of course i hate her. i thought i loved him once. of course i hate.

and he wasn't the first boy who wanted to marry me. i was engaged before when i was just out of college. he was smart and skateboarded and had a real job and taught me things like how to file my bills and the proper way to do laundry. i didn't really think if i wanted to be married or not but after all the fighting in my life it was a relief to have someone who told me what to do. but of course that only goes so far. and after a year of broken dishes, punched in walls and bruised arms he finally broke a bone in my foot and i had no more question. it was time to go.

i was 24 years old. i threw up for three straight days and packed everything i could and I left on an early plane home.

i already had the ticket. it was supposed to be for my final dress fitting.

that is where my reputation started. for "changing my mind". of course i could have told people. of course i could have defended myself. but it was easier to deal with the shame of being thought of as flighty than it was to be thought of as that girl. That girl that I was.

and i have a favorite client. and she has a terrible man in her life. and so does the girl on the train and a best friend and an old school mate. and there is no such thing as being all terrible or all kind. and it's hard to make someone leave when you know sometimes you need them.

Second Chances

Thank God for second chances.

I am so relieved I don't have to spend even one more second with the family that hated me.

I am going to law school.

I spend my weekends laughing and cooking and hugging a person who fills me with love.

It's been a long road but I am so glad to be here.

feminist

listen. i don't think of myself as a feminist. i mean, i believe that women should be given the same power and opportunities as men. doesn't that make me a humanist? an equalist? or fuck it. call me a feminist. i a proud to support women.

and i know relationships are complicated. i know how no one on the outside can know what is really going on. i have been there.

but come on. buck up.

have a conversation.

don't go starting something new while your devoted wife or your tiny kids sit at home waiting for and loving you.

and all you women out there. fall in love. believe in things. but don't forget your career. don't make yourself the third priority, behind him and them and whatever else. make him wait for you. take turns. make your own money. sow your own land.

because i spend my days planning budgets and giving credit counseling to strong women who lost their savings account and their credit score to the man who used their credit card to fund their addiction or the boyfriend who loved them so much they gave them a broken arm and two kids before leaving with her best friend.

and i'm getting kinda tired of this shit.

get it together guys. you aren't giving your kids much to believe in.

guardian angel

i have lost friends. dear, best, perfect, soft-skin friends. lost dreams and lost legs. i have lost breaths and favorite pens. but i have never lost, i have never missed someone like i miss ivan. it is deeper than my skin. it's an ache deeper than my bones. and it's not crushing, not new, it doesn't keep me from having fun or getting things done but it doesn't go away. it doesn't get less. it follows me. it's become a part of who i am.

i carry this loss like i carry my courage. close against my chest. it terrifies me. but i can't let go.

and i feel him with me all the time. look up at him when i get spit on or when the ground caves in. he follows me and i never knew if i believed in any of these things but he is with me when i look and he is beside me when i look away.

like a guardian angel or a omnipresent best friend or like he always has been. just quietly listening until he knew it was time and that i was ready to let him make me laugh again.