We Have Won

 After all of the joy I felt on Tuesday night watching record numbers of voters coming out to vote in support of this inspired president, to support women's rights, equality in marriage, access to health care, and an end to bigotry and hate. Like the election before it, the following days terrified me. My mom has a friend from her home state of Michigan who had "n*** lover" spray painted on her son's truck becuase of his Obama license plate. Twitter was inudated by tweens posting the N word and racial slurs that I didn't even think people knew anymore. Angry facebook "friends" posted cutting insults to me and my co workers like as women we were neglecting our children by caring about politics (not to mention the fact that he assumed as women we have children - which I do not. Believe it or not some women choose to have a career first). And the peppered comments all over social media stating all kinds of hateful and ignorant things that I won't even bother repeating - suffice to say the insults were personal attacks on liberal people not on liberal policy. And don't even get me started on Rush, Donald T and the rest of those racist/sexist/ poor sports and the classy way they have handled this defeat.

 The angry part of me wants to DARE the red states and the die hard conservatives to put their money where their mouths are. If you are of the belief that Americans take too many hand outs and that social services are BAD, please, by all means, don't participate in the programs. Don't collect unemployment or medicare or medicaid or food stamps or military pensions or FEMA aid or disability benefits. Don't get free care at the hospital, don't get the free lunch for your kids at school, don't use headstart, or the police services or ambulances or firetrucks. Don't live in subsidized housing or get a discount on your childcare vouchers. Perhaps that alone could free up the deficit.

 Or maybe you could reconsider what you are so angry about. Why a woman's desire to control her own body makes you feel so threatened.

  But either way - I saw this video of Obama and I realized - none of that matters. I can't change every persons minds or talk the world out of it's prejudices. There will always be ignorant hateful people who want to put others down. There will always be an underclass be it women, LGBT communities, immigrants, emigrants, disabled people...something.

   We will be fighting for our civil rights and for humanity for the rest of our lives. But as long as we are battling - We Have Won.

on death and dying

on friday october 5th at 6:23 in the morning i watched my nana glo take her last breath.

the days leading up to it were a blur of doctors and diagnosis.  some days were not so bad.  we even thought she was getting better.  and it was so quick its hard to get here. 

in the end it was hospital acquired pneumonia that finally got her. 

tough as she was.

and she fought it.  until she didn't.  and one late night when it was just me and her in the hospital room
i held her hand and told her, no one, not even her daughter, would be mad if she felt it was her time to go.

no one wants to see someone else suffer for them.

and when she was ready she told us.  and she whispered to each of us a little something - praising the ways we would carry her "Sargent" genes on for her.  and she was herself til the end.

she voted for obama from her icu bed.

she made us be silent for the presidential debate.

she came back to her home and pet her cat one last time and danced with her face to a favorite song.  she was agitated at times, talking fast, not wanting to leave anything undone, she wanted no messes when she was finally to go.  and we listened to her still.  all her wisdom.  all the same.

and she talked of compost, and energy and scooping things up.

and we fed her morphine on the hour - afraid every time that we would be the one to give the dose that killed her, and we itched her back and rubbed lotion in her hands and joe sang her "there were bells on a hill but i never heard them ringing no i never heard them at all til there was you"... and she mouthed the words, moved her head, and let the moment count for everything.

and we filled her house.  cousins and her children, spouses and in-laws, sleeping sitting up in chairs, sprawled on the floor on pillows and under tables.   i have never seen my big noisy family sit is such silence for so long.

when her mouth filled with foam we did our best to clean it.  when she opened her eyes we played vivaldi so she wouldn't feel any fear.  my father held his hands on hers willing her to let go with peace.

at 6:23 am a subtle change shifted across her face and we watched her take her last breath just after her lips turned a soft shade of blue and the light of the day made it's way through the windows.

the crows started their call.  family members were woken.  her children reaching for her.  tears and text messages.  so shocking is death even when it is most expected.  how quickly she left once it was time.

and still we sat.  my dad still holding her hand.  again silence.  one family staying with her in that room.  giving her the peace and the space to move on.  no one moving until the hospice nurse came to tell us it was time.

our nana glo was more than just a beautiful woman.  more than just a wife, just a mother, just a feminist, just a liberal.  she was the driving force behind an entire family.  generations of children have grown to be strong adults because of who she was. 

she faced her death with a courage i hope to have in my life. 

and i will miss takling to her about the latest book she has read or the last thing we both watched on pbs.  i will miss her puns and her npr commentaries.  i will miss talking about the latest art exhibits at the mfa, her advice for my garden or when she would give us green beans fresh from her garden.  i will miss those quiet moments in the end when she let me brush her hair.

and there are so many things i still need to ask her.

but i feel lucky to have grown up in such a strong and loving family.  rooted on our family street by her home, her heart, her sunday night dinners.  and i am thankful that nana glo let us be part of her death as she was such a huge part of our lives.

 as Nana Glo's last act she taught us all not only how to live but also how to die.

forgiveness

sometimes it's hard to admit that the thing you tried to forgive

has just become

one more thing that you crawl through the night

to hate.

because right now i think i hate you.

Breaths

Find hope in the sun drops and the passing breeze.

I have learned a lot about the things I need. He has helped me.

Married life

I had no idea being married could be so nice. We are so happy.

And with this lifetime of waiting for nothing at all, all the time,

it's nice to have something you want to come home too.

Count Down

To forever.

faith

i want to have faith in things, i do.  i want to believe in the balance of the universe, in the ebb of the journey, in the peace that we are supposed to find.  and i have felt it before.  spent months tacking the bits and pieces of my life on the wall.  re-arranging the pieces.  trimming the sides.  i have pushed myself to do things that were not that easy to do.

and i am suddenly no longer young.  i can see it in the wrinkles that are etching their way into my brow and i can see it in the hangovers i get when i stay up too late playing uno on the deck, not even drinking, but it's just that lack of sleep.

and i have watched you turn gardens and craddle friends and it was in your basement that i first got really drunk and i have never wanted that back, that uncertainty of being young, but it is hard to know what to say to you right now and i wish we could just sit around your fathers old record player and listen to kenny loggins and have everything be quiet in that old time way.

Ticking bomb

A ticking bomb tocks inside me. Fevers or broken tendons and a leg that hurts all the time but only walks sometimes. I have a ticking bomb inside me that lets me count stars and hearts and hands. There is a ticking bomb inside of me that only i can hear.

Selfish

I watch the sweetest seven year old playing video games when he is not too busy fighting the leukemia that has thus far failed to leave him. And to tell the truth I am terrified that he won't make it and what do you do with that. What do you say to his beautiful mom.

Sweet j

If only wanting something could be enough to make it be... Watch over sweet j.

Sweet sweet jane

Do you surrender do you let it pull you under do you save yourself or do you always have to drown just to prove you really tried. You really tried.

Growing

We all have been doing some growing. The keepsakes the name sakes the history-repeating-itself-type-mistakes. It is never the same, these stories we repeat. We run circles and remember the good times somewhere knowing there is more than a little make believe in the memories we are inventing.

Winning!

Sometimes, you can't win.  Even with the best cards/pick.  First I am upset they want to put me in the hospital, then I am scared when they decide I don't have to. 

I really do like my job

but
still

I loved law school.

It's hard to give it up.  I toy with going back.  I was good at it.  I liked it.
But I know it makes no sense.

Like as it is they already told me my pregnancy will be high risk.

For me.

And I know I couldn't do that and law school and I only have so much time. 

But lately it bums me out. 
I feel like talking less and less.  I just need a break from all this real world/life stuff.

And I had to call 911 on a client I found covered head to toe in her own blood.  And it brought me back to my accident all those years ago.  I could feel the sensation of that hot blood pouring down my legs.  The terror that brings when they tell you to say goodbye.

And she is okay.  She was lucky in ways that I was not though I am lucky still.

And what is luck but some lame way that people try to make things that aren't okay - okay.

It is May.  I turned 34 years old.  I celebrated life for a friend whose little boy has cancer and is fighting and everyone was there but those of us that didn't make it.  And my heart ached for Ivan and Chip and Melinda.  And my heart ached for my friend and her little boy.

And I don't always believe in hope.

Though I hope it finds it's way back to me.

A little less

Without you, things like birthdays matter a little less. The hurt I blamed you for in your life fills the crack in my foundation - the weight of the hurt I feel in your death. So yesterday I ate cake and opened presents and before bed I pressed the yellow and pink flowers on the birthday card you gave me when I was sixteen against the palm of my hand. Trace the letters you wrote with my pointer finger. Nothing much. But it's everything I have left of you now.

Starting

Starting over. Toggle buttons and password hints. It never comes easy or always does. If you stop talking I will stop too. It's not like anything is really forever if you don't mean it and do it and push on through.

matrimony

there is no time like the present.

forgive and forget.

fake it til you make it.

and a bunch of other bull shit sayings that don't really work
like

we do.

by-gones

let's let by-gones be.

the days are staying bright and the sun is finally warming me.

spent a day at the park watching little league games and eating ice cream truck treats.

mostly things are just the way i have always wanted them to be.


mostly there is peace when i turn my face from my pillow when the morning time comes.

it is not always easy, the living.   (and) why did we all think it was supposed to be....

inherently

last night i dreamt that i was at my family's cabin in the woods of the cape only instead of the peace that i usually feel, there were stray tigers watching us in the night, dark shadows lurking, my father standing outside the door not wearing his glasses with blood on his hands, his face covered in bruises.  it was terrifying.  and i called to my dad and i saw his hand on the screen door, the bloody print it left. 

but when he came inside he was smiling and he lead me out the door to the sky outside and the stars were the brightest i had ever seen and i could see every constellation as clear as it were that iphone app that draws it out for you and the strangers in the woods turned into cousins who have grown their entire lives on the same street as I and the tigers were gone and in their place my sister, my mother, my nana glo.  and the blood print was still on the door and i don't know how my dad had fallen but we just stood there together, he and I, watching the sky and I didn't have to feel even the slightest bit scared (scarred) anymore.

prognosis

a month or two a go my rheumatologist who lacks the basic nurturing skills that one would desire when getting a prognosis (as the diagnosis still elludes me) shook up my world in such a calmly delivered explanation it has taken me all this time to even hear it.

she told me that my antibody results and clinical features are not definative yet - but lend themselves to an eventual diagnosis of Mixed Connective Tissue Disorder - an exciting overlap syndrome that combines aspects of lupus, sclederma and polymyositis.  there is a chance i will not progress any more than i have thus far but it's much more likely that in 5 - 10 years the disease will progress to the full fledged disease.

she told me it's a bad diagnosis.  that people can die from it "and it's not a pretty way to go".  she said those words.  why, i can't fathom.

and she told me to enjoy the time i have now.  to do the things i've always wanted.  to take advantage of this time i have now.

and it scared me and i don't really know what to do with that information.

except to say that i am getting married and i am going to spend my time celebrating and honoring that love and i am not going to give all my energy to law school.  i am going to give all my energy to love.

forever.

i have love and a job that i can do and enjoy too, and i have a fever and this sunny day and we found a place we want to live forever and we actually have the money to buy a house and to go on a winter honeymoon to somewhere far away like ireland or costa rica too. i am terribley lucky and unlucky too and i hope that my health allows me to have kids and i hope that my nights allow me to sleep soundly and i have found peace before i will have peace again kayaking with my beau to the little tiny island where we laid picnics and watched mothers sitting on their eggs and where he proposed with the most beautiful surprise ring last week - and where we will join our hands and names forever in two months more.

alchemy

there are things we were supposed to know. mixtures, potions, pillow talk for that child you had been. or will it be again.

it is sunshine here but cold. sometimes nothing feels the way it looks like it should.

again imagined myself with one foot in each world. wondering if i will mind the dying - when all i picture when i think of death is ivan waiting for me on the other side.

and the other side has become green fields and gauzy shirts.

like you can really just run and leave things behind.

it is april. yesterday was kira's birthday. tonight i share my home with a stranger when all i want is to be alone on my porch.
i have to make big decisions about things like going back to law school or staying here or what else and i have to base those things on the intangible of my health.

i was going forward before like everyone told me, as if i were as healthy as you. and that lame advice will have cost me $30,000 for nothing because really we all know i am much too sick to return to school.

i am pissed you didn't warn me better.

i am pissed that i am not as healthy as you.

just once

just once i would like you to do the right thing just because it is the right thing. i have a fever again/still. i don't have the energy to anything with you. i am fighting for each day. just hoping that my body can do this. i am still surprised this has not all gone away. i hear them say autoimmune disease and i hear it, i do, but it's just that deep down and inside i still feel the same way i have always felt so it's hard to understand the things that my body now won't do.

so lets hope for remission or treatment or something.

or could i trade my 50 years of disease for the 4 years of cancer that will either kill or save you.

Victories

Into my second week of work and I am so exhausted my bones hurt and my doctor said I couldn't do it but I think I can. And I am. When you are as sick as me the smallest things become victories. And my small victories are huge today.

say it once

i am starting a new job tomorrow. full time. another non profit and i think i will like the work. it's stuff i know - helping people get benefits and the things they need to stay in their housing. and i am excited to have a place to go each day again. to wear ironed shirts and to pack lentil salads and apples for my lunches. and i hope that i can do it. that i don't get too sick. that i am not too tired to make it through the days.

a line

draw a line. find some dignity. walk away. what is there to be afraid of. so what if my lungs are scarred or the muscles don't work that are supposed to keep me breathing. maybe it's easier this way. maybe i don't want to breath so much. maybe i don't want to take so much in. maybe a short life is just as good as a long life. maybe it's just shorter.

Healthy people like to think that us sick people don't mind all the tests and scans and hospital trips we take. I think it makes people feel better. But it's not true. Swallowing barium, getting injections of radiation, blowing into tubes connected to machines, these things don't become magically pleasant when you have to do them all the time. But you do learn to do it. You stop needing to read the print out from the radiologist on how to prepare. You develop reward systems (an iced coffee after PET scan or pizza on pulmonary function day) and you find crutches (Ativan for the MRI's or a Bailys for those unlike me whose medications still allow them to enjoy a drink once in a while). And you learn fight songs. You scream in your car as you cross the bridge that separates the life you love in CAmbridge and the things waiting for you in Boston. You listen to loud songs and grunt like Rocky, you mouth fuck off to every car that gets too near to you, you lean far back into your seat and sing every word over and over til you are ready to get out of your car, to climb the hill, to go inside and meet what waits for you inside. It turns out my lungs might not be good. I wasn't quite ready for this one.

You wouldn't believe the songs that make me cry since Ivan died. It's just that we shared the 90's and you know what we listened to. I am at MGH for the day. I am here at least twice a week these days and often more like daily. I admit it's grown comforting like sometimes I think these people here, these doctors and patients might be the only people in this city who really know what Joe and I go through. Praying for health but sleeping each night with the sickness tucked close to you.

belly aches

I have a stomach bug and it is as awful as always. Chicken soup, the dizzy under-nourished feeling, hiding from the light of the tv.