Thursday, September 2, 2010


Cleveland means I screwed up, but it also means I know when I'm licked.

The plan was to get a job, but instead I experienced even more decline in my condition. By the time I left Philly I could walk fewer blocks, tolerate less heat and had more frequent subluxations and a subsequent greater reliance on my pain medicine.

This in a matter of months.

My sister said she couldn't live with me any more. I think truthfully she didn't want to watch the physical decline of her older sister, her playmate, her confidante and one whom was once warmly aspired to.

Her sister didn't want to watch it either.

I wanted to be far, far away from people. Even my friends. I wanted to not exist, which is not the same as wanting to be dead.

Sometimes I feel like the only person diagnosed with EDS who hasn't got her shit together.

I fail at having a positive attitude. I cry when doctors are rude to me. I cry when creditors call. I cry sometimes for no reason at all, and then wonder if I'm getting depressed.

Even though it's not my fault. I run through my PT exercises twice a day. I fill a liter bottle full of homemade electrolyte solution three times a day and drink it. I smother my food with salt. I take my medications diligently.

Yesterday, I fainted, mostly out of my own stubbornness. I felt the swimmy light-headed feeling come on but I thought maybe I could push through it. Maybe it would just go away. After all, in teaching I couldn't afford to go around fainting whenever I (my body) felt like it.

After a battle of wills (myself and myself-other-than-my-body), I awoke on my hardwood floor with sharp flashes of pain in my hip and shoulder where I'd hit. My mother rushed in with 20 questions. When I answered none of them, she said, "Do you just want to lie there for awhile?"

I nodded.

Who are these people who smile and bear it, even though they're in pain? Who are these people who bear no ill will to the doctors who belittled and mistreated them? Who are these people who when the EDS charity lost hundreds of thousands of dollars worth of research dollars to the North American Bear Society had the graciousness to tell them congratulations.

God and Jesus and Mary and Joseph and all the disciples.


I very nearly wrote that gem on their Facebook page.

As I walked along the lake today I periodically dropped into a squat, obliging my body so I would not faint and fall into the water. My father said nothing. I said nothing. I just knelt, forcing the blood back into my brain, and continued walking. I was swigging water all the way.

Tonight, I am listening to the wonderful din of the crickets with my windows flung wide open. They aren't singing to me, but in spite of me.

I was raised in this house. When we first moved here, I was three years old. My grandmother planted two yew saplings in our backyard for the meaning of my given name, Yvette (little yew.) They are not so little anymore. Almost taller than the house and full of small birds and squirrels.

Yew trees are known for being strong, flexible, long-lived....

There is a massive gulf between being well enough to care for yourself and being well enough to work, even part-time. Especially when the root of your problem is the inability to assume the upright position.

My mother and I always make jokes about jobs women can do while lying down.

The closest I came to writing a poem about being sick that was not heavily metaphorical was "The Poor Thing."

The first pitying look I ever received, walking with my
cane and my mother on the first day of autumn.

Her face just said,
Oh, you poor thing.

The poor thing slammed her purchases into the back seat
and then clambered into the car.

The poor thing speeds on the highway every chance she gets,
tells her passengers to watch for the cops.

The poor thing only listens to NPR
when she's feeling good and melancholy.

The poor thing told off her last doctor
and left the office in angry tears.

The poor thing wishes she were dead.
The poor thing wishes you were dead.

Some weekends, after a long day,
on the bathroom floor of a stranger's house.

In the wide open country on a freezing night.
The poor thing asserts herself to God.
she appeals to the teeming sky.

One star must answer
or they all will.
Won't they rain a rain
that reaches across, across
that forms the substance of her body,
so close to correct.

I don't intend to ever try to publish it (it's kind of a mess), so it's fine for me to post it here.

In the land of more legitimate works, tomorrow I intend to (finally) send a year's worth of my best work to several magazines I enjoy and admire. If I'm successful, I'll be sure to let you know.

I wish I had a more crafty skill like knitting or crocheting or drawing. I could make money that way for sure. People don't buy poems. Nevertheless, I had an idea for a Poetry Drive, where I would write poems for $5 a piece ($10 for form poems) based on a single word supplied by a customer.

My ferritin has been hovering around 13 (should be 25) for...a little over a year now. I need an iron infusion (I can't take iron pills due to chronic constipation) and I can't afford it, even with insurance. I really think I might feel better if I got this infusion so that Poetry Drive idea just might happen.

I need money. I need to write. People need to appreciate my legitimate skill. For that matter, people need to appreciate the legitimate skill of many poets who labor in the peripheral, overshadowed by fiction writers.


Em said...

i know that stance so well, drop to the floor when you loose you vision to darkness, that way you dont end up passing out. ive been doing this since the age of 13.

when my symptoms hit a high, im no brave person. i cry at the unfairness, although now its a quick tear, because crying makes me feel sick, makes my body feel a hundred times worse. i still seethe when others cant see nothing is wrong on the outside, they dont see me on days i overwhelmed with illness because im flat out in bed.

knitting helps me, on days when i want to be somewhere else, knitting and purling takes my mind elsewhere. take care. x

Anonymous said...

I only look like I've got my shit together.

I've failed out of classes because I missed them too often. I'm supposedly on a part-time schedule but the honest truth is that I'm half-time and only that because my boyfriend can arrange to drop me off and get me. I'm sicker every year, more injured, more in pain, and the POTS has gotten worse every summer for 3 years running (or at least, I assume that it was POTS that flattened me when I first moved here; I didn't actually get diagnosed until this summer).

I don't have a positive attitude. I think "This sucks, but the alternatives are worse." I'm still angry at the nurse who refused to give me more effective pain medication 3 years ago. I cry...well, the only reason I don't cry more is because it hurts my boyfriend which hurts me and so it hurts less to not cry. Also, I have a good shrink, and I do cry in her office on a pretty regular basis. And I used to have regular occasions of swearing at the top of my lungs after dealing with health insurance and medical supply companies - I just don't now because I haven't had to fight with them, my doctors have been able to.

I think living with EDS feels like a chronic case of not having your shit together because it's always one thing after another, or the same thing repeating but worse and worse, and so it always feels like you never quite get your feet under you. It's like saying that you're somehow to blame when the tide comes in and the waves keep knocking you over and getting bigger. Maybe if you chose to stand there, you could imply some kind of blame, but we didn't choose to stand here, to be born like this.

I collapsed yesterday. Wednesday took too much out of me and I guess I got a little too warm. I got up off the couch and measured my length on the floor, almost squashing the dog and subluxing my hip. I got stuck down there for...I'm not sure how long, except that the dog made multiple visits to nose me in the face and sniff and try to figure out why I wasn't moving. I probably should have called myself an ambulance, but my brain doesn't work well when I'm in that state - I realized they'd have to break down my front door if I couldn't open it, and decided it wasn't such a good idea.

We all self-edit, and we rarely look as bad in front of other people as we really are. Hell, I blog about living with this and to be honest I think I sometimes pull my punches because I don't want to be the pitiful one and I don't want to hear shit like 'you just need to keep a positive attitude/work harder/eat better' so on.

So you're not alone. I rarely feel like my shit is together. Hell, I failed to follow through on my SSDI application last year because I was just so...overwhelmed with stuff. I'll have to re-apply this year. At least my GP supports me on the application, or he did last year anyway, and I assume he will this time as well.


Yvette said...

Em and Kali...your comments mean so much to me, even though that sounds cliche. Just knowing that I'm not the only one who has trouble coping and breaks down from time to time.

Em, that's awful that crying make you feel worse; I'd feel awful...I'd probably manage to cry anyway. Thank you for telling me that EDS can be scary, even if you've had the diagnosis for awhile.

Kali, it's a good thing Hudson was there. But you probably should have called an ambulance. One of my greatest fear is being alone when my autonomic nervous system decides to act up.

And yes, SSDI applications are so, so much work. Mine went on for months...most of a year if I recall correctly.