Tuesday, April 22, 2014
Monday, April 21, 2014
i am waiting for sleep when the walls start to fall down.
my leg kicks out an involuntary spasm and then two more. i count the pills i have taken. i think maybe it is anxiety but it is not. my sugar is crashing.
my body looks so whole. the parts that are missing were on the inside and looking at me, you might not guess that my appendix is gone, and my thyroid too.
i was whole once. i did not have nightmares.
they should take the pancreas, i think. it does not work anymore; occasionally it sputters out the insulin that everyone else’s body makes without issue. it is frustrating when that happens because i have taken replacement insulin and so now my body is filled with too much insulin and i have to eat carbs and fat to absorb the overflow. i shake and sound drunk until i find food.
i never know the days the pancreas will want to work. i do not yet understand. is there an algorithm, a method? i do not know. i chart it, i count, i keep track. i use math and my body laughs.
tonight the walls fall down. the foundation lets out one last whiff of dust and so the house reacts. and i get dizzy and i crawl my way toward the refrigerator, full of juice and cheese and peanut butter and i eat the recommended amount until the dust settles and the numbers on my meter say okay, okay now.
i know this is no cure.
I can’t tell yet if she’ll love princesses and castles and Barbies like her big cousins but for now, she loves playing mommy to her baby doll Max Bloom from Happy Endings (rip), and she loves being outside.
She’s all frills and bruises and karate kicks and basketball hoops. It’s so fun to watch her experience new things, to really pay attention to her story books and sit and color for more than 90 seconds at a time. I have a feeling this is going to be a great summer down here at the beach.
Saturday, April 19, 2014
My heart beats outside my chest now.
Friday, April 18, 2014
things I write to remember
I wake up shaking, my feet kicking, my head slamming against the pillow, side to side. I come halfway into consciousness and steady myself but my foot still kicks. I am barely awake and I am in the middle of a temper tantrum.
I have not slept; only an hour or two has passed since I put my sleep app on. I didn’t fall asleep until 3:30 the night before but now I see day break as I continue to thrash violently against the pillow.
This energy has been sitting, unused. I have cried and laughed these past few months but I have not been angry. My chest burns and my heart races. I wonder what my blood pressure is. I take a deep breath, and then two more.
I drift in and out of sleep, but the pain breaks through. I am livid with myself, with my body and it’s fucked up-ness. Every nerve ending is lit up, burning.
It is 6:00 in the morning, and I cannot sleep. I have one eye on this screen and the other shut, and I am remembering this for later, for the hope I will fix this, and soon.
Thursday, April 17, 2014
Cakes have gotten a bad rap. People equate virtue with turning down dessert. There is always one person at the table who holds up her hand when I serve the cake. No, really, I couldn’t she says, and then gives her flat stomach a conspiratorial little pat. Everyone who is pressing a fork into that first tender layer looks at the person who declined the plate, and they all think, That person is better than I am. That person has discipline. But that isn’t a person with discipline; that is a person who has completely lost touch with joy. A slice of cake never made anybody fat. You don’t eat the whole cake. You don’t eat a cake every day of your life. You take the cake when it is offered because the cake is delicious. You have a slice of cake and what it reminds you of is someplace that’s safe, uncomplicated, without stress. A cake is a party, a birthday, a wedding. A cake is what’s served on the happiest days of your life.
Jeanne Ray (via shetakesflight)
Always say yes to cake. (via megburns)
Some people really don’t like cake!
I wish they served donuts at weddings.
Wednesday, April 16, 2014
I’ve been thinking about someone.
I’m sorry you feel lonely.
You are hidden, all right, but you are very lively.
You give a rat-a-tat-tat to the plainest music.
Do you see—of course you see nothing—I’ll make you aware—
I mean, how do impressions get down to you, unequal-equal heart,
My nerves send them down. And my…
Tuesday, April 15, 2014
Another myth that is firmly upheld is that disabled people are dependent and non-disabled people are independent. No one is actually independent. This is a myth perpetuated by disablism and driven by capitalism - we are all actually interdependent. Chances are, disabled or not, you don’t grow all of your food. Chances are, you didn’t build the car, bike, wheelchair, subway, shoes, or bus that transports you. Chances are you didn’t construct your home. Chances are you didn’t sew your clothing (or make the fabric and thread used to sew it). The difference between the needs that many disabled people have and the needs of people who are not labelled as disabled is that non-disabled people have had their dependencies normalized. The world has been built to accommodate certain needs and call the people who need those things independent, while other needs are considered exceptional. Each of us relies on others every day. We all rely on one another for support, resources, and to meet our needs. We are all interdependent. This interdependence is not weakness; rather, it is a part of our humanity.
AJ Withers Disability Politics and Theory p109 (via dandyfied)
iPad Mini: $291.27
I threw my iPad onto my passenger seat and the screen shattered into a spiderweb of pain and regret and then I cut my finger on the shards of LIFE and then I was just gonna to fix the screen but then I decided I’d get a new one and give GlassPad to the baby niece and then I found out I was being sued but I still bought it anyway because fuck the man.
Money this could have went to: LAWYER, medical debt, diabetic testing supplies, therapy.
My new blog is scary.
Monday, April 14, 2014
Myself, I love the imagery of struggle. I sometimes wish I were suffering in a good cause, or risking my life for the good of others, instead of just being a gravely endangered patient. Allow me to inform you, though, that when you sit in a room with a set of other finalists, and kindly people bring a huge transparent bag of poison and plug it into your arm, and you either read or don’t read a book while the venom sack gradually empties itself into your system, the image of the ardent soldier or revolutionary is the very last one that will occur to you. You feel swamped with passivity and impotence: dissolving in powerlessness like a sugar lump in water.
Christopher Hitchens. He fucking got it.
Ice cream cone: $3.09
Tip I threw in due to emotions: $10
Total for an ice cream cone: $13.09
I drove home from my friend’s wedding, stopped in my childhood hometown to get gas, saw the ice cream parlor where I spent most of my time in until I was unceremoniously ripped from my childhood home, saw the lady behind the counter and realized she’s been working there since I’ve been going, ask her about it, find out she’s been there for 22 years and doesn’t even own the joint, cry, tip her $10.
Saturday, April 12, 2014
Sometimes I have loved the peacefulness of an ordinary Sunday. It is like standing in a newly planted garden after a warm rain. You can feel the silent and invisible life.
Marilynne Robinson, Gilead (via omgskr)
I finished Gilead a couple of summers ago on our outdoor, screened-in porch as the rain fell. I can’t think of a more peaceful place to read this book.
Friday, April 11, 2014
MADE MRSA WORK!
(Best bridesmaid ever.)
Thursday, April 10, 2014
Today, at Target: $12.99
Upon returning home, I tore off the tags, put it on, and realized I bought an XS instead of a Medium.
MONEY THIS COULD HAVE WENT TO:
1) My outstanding medical debts
2) My pricy medical bills
3) My pricy health insurance
4) The swans I want at my funeral.
I started a new blog about all the things I buy instead of saving for my retirement. Go, follow! Laugh as I Amazon Prime my way into bankrupcy!
One of us is getting married Saturday! The other one will be tripping down the aisle in her bridesmaid dress! #tbt #2006 #babies #thatBronxlife