Lonely Stories

(1.)

N. and I met on an archetypically beautiful August day. The day was beautiful. I was beautiful. He was beautiful. The confluence of these things drew the attention of people as we walked by. Typically, people ignored me no matter how dressed up I was but when N. and I were together, people seemed to be able to sense my beauty. I don't know how. It did feel nice.

We talked about our writing. He talked about New York, I talked about Chicago. It felt nice to talk to someone again. Finally, feeling confident, I decided to breach another wall of my identity, one I had been pointedly ignoring.I told him why I was wearing thick, black tights despite the heat. It was a pretty cut and dry explanation of orthostatic intolerance. But N. wanted to know more...and more. How did it happen? Was it curable? And I couldn't shut up.

Ten minutes later I had rained all over our date with my mouth with the past five years of my life. I fully expected never to hear from him again. But I did.

We talked more. At his room in a large suburban house. About his kids. We went to the library and took out books and shared passages from them with each other. He told me about his ex. But whenever I tried to tell him about anything related to EDS, he stumbled, seemed unsure.

"Are you sure this isn't mental?" he asked. "Yes, I'm sure." I said flatly, in a tone of voice that settled the conversation.

I showed him my ring splints, my bruise-y skin and funky scars. He would always seem to understand, but then would want to go for walks at one in the afternoon when the sun was out. "Please, let's drive," I'd say. "It'll be fun." he said.

On our last date, I told him all about my grand time at the EDNF conference and how it made me feel so at ease not to have to explain myself to anyone, but also a little sad, because I wanted to go to writing conferences too. I told him I felt that I until my doctors were willing to rally about me as a team, there was no way, I feared, to move forward in my life.

After we had hot chocolate (by now it was fall) at a cafe, we walked back to my car. He picked crabapples from a tree for me and I sorted out the worm-bitten ones and ate them. Delicious.

Then he said, "What if, you're just imagining yourself sick and your really not sick at all." I felt myself made the saddest, barest face. "I'm pretty sure that's what my doctors already think." I said.

(2)

When clinicians found that Black women were dying of breast cancer at a greater rate than White women despite contracting it less often, they initially blamed a more aggressive type of tumor than Black women are prone to getting. However, this did not completely explain the disparity. They went on the control for income, access to insurance, education to try to close to the gap.

"I feel like I'm living these statistics," I thought as I read. Here's a very recent publication from Oncology Nurse Advisor:

According to the report, black and white women reported equal breast cancer screening in 2010: 74% of black women and 73% of white women aged 50 to 74 years said they had undergone mammography screening within the past 2 years. However, when abnormal mammogram results are noted, 20% of black women experience follow-up times of more than 60 days, compared with just 12% of white women. And although treatment should begin as soon as possible after cancer is found, only 69% of black women start treatment within 30 days, compared with 83% of white women.

So, in essence, most of these delays are on the clinical side, rather than the patient side. Reading this I began to wonder why the time to see my neurologist was always the same: seven to eight weeks. The first time I saw him, I waited seven weeks. The second time, eight weeks. For my follow-up after my hospitalization, I was told to follow-up in two weeks, but the soonest they could see me was again, eight weeks. I wonder what would happen if I asked for a nine week follow-up?

Chicago

Several things happened upon my return from Chicago. I was diagnosed with peripheral polyuneuropathy (of the large and small fibers), my mother had a nightmare so distubing she woke me in the middle of the night to see if I was okay, my father asked me what I intended to do when he and my mother passed away.

And, in response, I resolved to shove my health issues to the very, very back of my mind and put something heavy in front of the door.

Chicago was hot. Even the little jet I flew in on seemed to be having trouble staying cool, despite the conditioned air. I had a window seat (always) and I took in the city, staggered on the coast of Lake Michigan.

The lake had a summery color, chambray blue.

J. and I go way back...sorta. We didn't grow up together or anything, we just casually bumped into each other on the Internet, liked each other's writing and when I moved to Chicago, J.'s hometown, for school we met in person for the first time and became fast friends.

In Chicago, I promptly did a bunch of inadvisable things. I ran myself ragged on my very first day, despite having been up since four in the morning. The next day I stripped off all of my compression garments, put on a bikini, went frolicking in the 80 degree heat and lay on the hot, hot sand.

WHO NEEDS OXYGEN TO THE BRAIN?

The next day I couldn't even sit up, so I rested all day (and looted the contents of J.'s fridge) And the next day I was at it again. I ended my trip on a rooftop, with the Sears Tower just visible in the distance.

At home I feel pensive. Surely, I want to move out. Surely I want to live more broadly than I am now. But even these thoughts are at odds with the fact that even five minutes in direct sunlight was enough to sap my energy at an alarming rate.

I tried in vain to convey to J. just how little physical and mental energy I had. It's like puncturing your gas tank in the morning before you drive to work, I said. That's what a hot day does to me. Everything takes my energy. Standing while I'm brushing my teeth, a shower, any meal more complicated than a sandwich or a bowl of cereal....

It takes me an hour to get ready in the morning, then I lie down for an hour before I'm ready to go. When I look at it this way, trying to ignore my health issues in favor of living a little feels irresponsible at best. My doctor said I should only spend 20 minutes a day being upset about my health, which I think is just rich.

Because what am I thinking about while I'm wrapping my abdomen in ace bandanges so tight I can hardly breathe? (That's my version of an abdominal binder, to prevent blood pooling.) Or when I rest my smarting fingers from yanking on my compression tights? Or when I'm trying to schedule my life so carefully so that one event falls on every other day, where an event is an excursion of less than two and a half hours including transportation. Which sounds simple until you find yourself walking away from a poetry reading because if you don't you won't have enough energy to drive yourself home. And it'd be one thing if these things were predictable or stable in any way but no. No one has any explanation.

So how does one live well while losing a tug-of-war for one's quality of life with a disease that isn't even taken seriously by one's physicians?

I suspect that I'm going to be the only one who can answer that question in the in the end.

Oh, Yvette, wah, wah, wah. Have some more pictures. I did go bra shopping with J. and we found out we're the same size! "We're bra buddies!" she said. I said, "I'm gonna steal your shit." But The Little Bra Company did not pan out, sorry to say. Just look at this little slip of fabric! Here, a 28C or some other size I probably was when I was 9.

I might have bought it anyway had not it been for one problem. The band. TLBC claims that their bands run small. They do not. Their bands are the same size as other manufacturers! Thus, a 32C is too large in the band! So the $100 credit I bought is totally wasted (on bras at least) I'd have to gain a lot of weight to be a 32 in the band again, and I'd have to lose a lot more to drop down to the next plausible TLBC size, a 30C, a prospect that should it come to pass, bras would be the least of my worries. So TTYL, TLBC. I suspect I'll be spending my credit on underwear and maybe getting my favorite of the bras I ordered, the Sascha, tailored down to my size by tightening up the band. The cups, for the most part, fit fine. Slightly small.

If I were the TLBC, I would advise that it is the cups, not the band that runs slightly small.

Shit is complicated, isn't it? So in the end, I have one TLBC bra that needs tailoring, the Sascha, one Betsey Johnson bra in a 30D and one ancient French bra I bought from Filene's Basement in a 65DD or some incomprehensible Euro size that I finally fit into.

Thoughts on my Body and The Little Bra Company***

Bras are a big deal to me. I 'filled out' early as a 10-year-old and I hated every moment of it. I hated the training bras, I hated the stares. I was a small girl with larger than average breasts then. Now I'm a small woman with small-ish breasts that are strange to her, but nevertheless, need a bra.

With being sick for so long, I was distantly aware of the fact that I was losing weight, but didn't really pay attention to how much until I dug out my summer clothes from last summer and discovered that they were ludicrously ill-fitting. My shorts gapped in the front, almost flashing my underwear, my shirts sagged unattractively at the neck and my sundresses hung on me like shapeless sacks. I was so dismayed that I whined and complained to everyone who would listen. My mother, my sister, even my father and brother. My clothes don't fit,** I lamented. What's a fashion-obsessed girl on a disability income to do?

The worst by far was my bras. The bands rode up savagely in the back, while the straps fell down over and over again, no matter how many times I fixed them. So not only were my clothes frumpy, but my bras weren't doing their job.

And that's just not acceptable. As a girl who has been as large as a 34G, I know the importance of a well-fitted bra. My bras never fit, ever, until very recently and my breasts have paid the price. Unless I'm wearing a bra, my breasts have no shape or perk to them whatsoever. They just sit there. It's one of the few things about my body that makes me truly sad, as silly as it sounds. 

We are our bodies on some level and I still remember being a girl of 11 and having to wear a D cup and crying about it because I would not stop growing. It was my first implication that my body, the third and most distant iteration of myself, was not under my control and would not be brought under my control by any amount of wishing, praying, raging or crying. 

Earlier this year, I went on a spree of bra alterations, snipping my bra bands and then re-sewing them to make them smaller. It was a janky job with mismatched thread, but what a relief from back straps riding up all of the time!  All of my bras are either ratty, cheap, too big or some combination of all three, and I am itching to replace them. 

Enter The Little Bra Company. Owner Emily Lau's line of bras are designed specifically for petite women with smaller frames and smaller chests who have trouble finding their sizes elsewhere. Both cute and practical, there are strapless bras, convertable bras, switchable straps and a number of different cuts for varying necklines.

I'm really drawn to the Lucia, with its lovely lace detail, and I've read a number of reviews that suggest it's a really good bra, if not a little big in the band.

 
I wasn't sure whether I could fit TLBC's bras, which by all accounts run quite small, and when I tried to size myself by their method I ended up with a nonsensical result. 

Underbust=28 (+4) =32

Overbust=32

32-32=0?!?

The difference between the underbust+4 and overbust is supposed to equal your cup size! A=1 B=2 C=3. When I e-mailed about it, the representative said that most people who got these 0 results where AAs and AAAs, but one quick glance at my chest reassured me I was neither. This is why I don't really like the this particular method of sizing. For a long time I had bras that didn't fit because I could never calculate my size, combined with always being incorrectly sized at places like Victoria's Secret that didn't carry my combination of smaller band and larger cup.

I'm really hoping the Lucia fits well because it is just too cute. It's nice to see bras made specifically for petites since this market is criminally underserved in the mainstream. Right now the range of sizes is from a 28-38A, 28-36B and 28-34C, with not all bras available in all sizes yet. 

Recently, I ordered the Angela in a 34C and I liked almost everything about it but the padding. I wore it around for a bit, but there was something that just felt off, and I'm sure it was the padding. Because of the shape of my breasts, an attempt to create cleavage by pushing them together is both unflattering and uncomfortable.  This makes me think the Lucia might not be such a good idea. The Sascha, a strapless bra with removable padding and switchable straps might be the best bet, even though the Lucia is just so much prettier. 

Please look forward to the follow up to this review where I hope to try on all the bras in an range of sizes at Isabella's, a lingerie store in Chicago where I'll be travelling this weekend to meet up with a friend. Guess what? She needs new bras too! Petite girl bra shopping field trip! 

**Said with plenty of First World W(h)ine.
***Still having wacky symptoms, just hitting 'pause' on the universe right now.

The Museum

I love that the art museum in Cleveland is free, because when you're in a mood (like I am) you can just roll up in. When I was younger, I remember being shocked when I visited other cities that you had to pay to visit their art museums. To me it seemed unthinkable, like charging admission to a library.

This was my favorite piece of art when I was a little girl. I loved this little girl's clear expression and her beautiful gray dress. I told my dad I wanted a dress like that.

Guys take their dates there. Of course everyone's been, but a couple can feel each other out, by listening to what the other thinks of certain pieces. When I go with my friends, I love to tell them what I think of the Egyptian and Etruscan art, and then the Impressionist and Surrealist art.

Some of it is so old and so finely rendered they have to keep it in the basement, far away from the light of the sun.

I wonder what merchant's wife wore the beautifully worked gold necklace saw. Was she older or younger? Was the marriage arranged? Did her husband take joy in her presence?

Did she love her necklace, in other words, because it was gold and precious or because it came from him?

I can't tell you how many Code of Hammurabi-era bodice rippers I've made up in my head from the time I was like seven until now.

Poetry about artwork is called ekphrasis. Look at the sexy, bold Greek-ness of that word! "I'm working on an ekphratic piece." Saying things like that is almost enough to make people forget to make a snide comment about me throwing my money away on a poetry degree. Almost.

I'm writing about The Death of Marat.

I actually read about the death of Marat before I ever saw it. One thing about his death struck me in particular. As he was dying he called, "Aidez-moi, ma chere amie." That is, my dear friend, help me. At first, I thought he was crying out to no one, in desperation. Later I learned he was calling Simone, his paramour, elsewhere in the building. I also learned all about Charlotte Corday, his assassin. It was a fascinating story, though I'm still not sure why I was so compelled by it.

I wrote:

In the Death of Marat, I am Marat, composing, humming
nothing too memorable, nothing complex, for soon I must be killed.

And of course there's much more but I can't put it here if I intend to publish this piece, which I do. Elsewhere in poetry, I'm trying to do a residency, or go into artistic seclusion and work on my manuscript. There's one in the woods of Minnesota I really like where you get your own private room, studio space and free meals.

And in health news I finally found a doctor willing to treat my pain after what, two years? She is very kind. On the day of my appointment my dad was actually late coming back with the car so I walked the office which was 4 miles away and up a large hill. I thought I was going to die. My clothes were stuck to me with sweat, sweat was pouring down my forehead and by the time I got to the building I couldn't quite hold myself up and was clinging to the walls

It's typical of me, to be impulsive and not necessarily exercise good judgment. I just knew I didn't want to wait three more months.

Next up, I think I might talk about my undying affection for fashion and how every doctor gets to see me in mascara, in tights and dresses and hats and oxfords. I miss being in Chicago honestly, because no one in Cleveland seems very interested in how they dress. Ugg boots, jeans, fleeces and puffer vests. I feel like a tourist in my own city sometimes.

The Poetry Entry

Some of my work can be read over at elimae. I was published in Starting Today: 100 poems for Obama's first 100 days. My poem in that book Missing Metaphor for Time is negatively mentioned by Anis Shivani of the Huffington Post here. I have a few other publication credits to my name, but those are the most interesting ones.

My mother taught me to read with a big illustrated childrens' bible and an illustrated dictionary. When I started kindergarten, I was the only one in my class who could already read. When I was eight I started writing. But I didn't start writing poetry until my junior year of college and only by accident; I needed a credit and a poetry class was open.

When I first got sick I was right in the middle of my masters thesis and the timing could not have been worse. It was fall going into winter in Chicago, I was cold and I was sick. My apartment was freezing; I slept in sweats with the oven on 400 degrees. It was a small program, so pretty much everyone in the program knew I was struggling with completing the thesis, but not why I was struggling. Because I was raised to conceal every sign of pain and discomfort, I didn't tell any of my schoolmates what was going on. Looking back, I wish I had.

Somehow, or more likely, with divine intervention, my thesis was completed. For two years after I didn't write anything. I wasn't too sick too write, although I was quite sick. I just didn't write. Then, out of nowhere I started writing again last month.

I feel badly sometimes because I move so slowly. One of my schoolmates has published three chapbooks and a collection and writes nonfiction too. At first I tried to schedule work times, but the unpredictability of my symptoms put a swift end to that. So, as much as it galls me, I just work as often as I can. Surprisingly, I can get a good amount of work done this way if I pick up my yellow pad whenever I have a spare moment. Best of all, it has a snowballing effect: the more I do, the more I want to do and the more I get done.

Because I started my thesis at the same time I was getting sick, I have a lot more material to work with than I would have imagined; there was no major change in theme between then and now. The idea of this chapbook is the illusion of control we have in our lives and the tentative title is "The Queen Constellation."

I really hope I'm able to pull it off.

A Season Between Winter and Spring

My notion of myself is changing slowly. It changes in dreams. Last night I dreamed I was in a train station. It was busy, bustling with people. I was trying to catch a train to Chicago, but the trains were ill-labeled. It was very confusing and I would run onto a train only to find it was the wrong one at the last minute and dash off again. The passengers seemed not to notice. Frustrated, I tried again to figure out which train was bound for Chicago. I needed to find the westbound train, but every time I thought I'd found it, it turned out to be headed in another direction. When I woke up I thought even if I get back to Chicago, it may not be the Chicago I remember. And I won't be the person I was before, in any facet.

It's very difficult at almost thirty years old to realize you will have to live your life in a completely different way. Aspire towards different goals. And most challenging of all, try to adapt to a body that doesn't resemble the one I remember.

Really, it's overwhelming.

I fired my rheumatologist today and made an appointment with a new one. No clue if she'll be better than the previous one, but I'm hoping and praying that she is. I'm also off to the hematologist to see about a low iron saturation.

This is going to cost yet more money (that I probably don't have) but it's crucial to have a treating doctor...if I'm ever going to be able to work again. This is the downside of having a rare and incurable disease...actually finding a doctor who wants anything to do with you.

Real Name, No Gimmick

Am I really prepared to say on my one and only public blog to which is attached my real name and real picture things like "Walgreens-brand Adult Glycerin Suppositories saved the day?"*

I would have like to come back to this blog under better circumstances. I would have liked to be living the suave, writer-ly life in Chicago. Hitting the open-mic circuit. Drinking good wine, partying with my friends and old school pals.

I never liked change at the best of times, so I'm still lost in the Kubler-Ross matrix of Denial, Depression, Anger etc. I try to remind myself it's only been two months since I was diagnosed and I owe myself some recovery time. I just started physical therapy. I just started seeing a treating rheumatologist. Maybe it's okay if I don't rush back into full-time work, and if society says that someone has to be working full-time to be decent person, maybe that's society's shame and not mine.

One of my sillier doctors thought I might be on the autistic spectrum. This is, of course, patently absurd. But it did get me thinking about the spectrum. I'm trying to find a good book on the subject, one neither geared to parents of affected children nor pathologizing the condition.

I'm starting with Temple Grandin's Thinking in Pictures.... And it's very interesting, because although Grandin isn't typical of every autistic person, the way she describes her thinking process is exactly the opposite of the way I think.

I think entirely in words. I have almost no spacial reasoning. I can't tell you the naked panic I feel when I see bathrooms that aren't marked MEN/WOMEN but instead have pictures. I have to pause... the figure in the skirt...means me...means women. Otherwise I might walk into the mens' bathroom seeing the stylized figure of a man and how my woman's body superficially resembles it. I'm not exaggerating.

On the verbal front, I'm so well-developed that I pick up languages in a heartbeat, even without trying. After living in Chicago for three years and seeing many things written bilingually, I can read simple Spanish.

But I read Thinking in Pictures... and glaze over as Grandin describes the livestock dip vat she designed. The water/pesticide mix is seven feet deep...much deeper than a cow or calf is tall. So the animal walks in. They float? Do they sink to the bottom and then float? I try to impose the rules of buoyancy on my imaginary cows. Where are their centers of gravity anyway? I give up ultimately and turn the page.

Then she mentions that autistic people have trouble learning anything not easily visualized, the way I have trouble with anything not easily rendered into words. As I read on, she talks about discover visual correlates for abstract ideas like 'getting along with people.' What verbal learners pick up through social cues, she had to first translate into her visual system.

It's fascinating stuff.


*they did

To Do, To Do, Tout Doucement

Here a review of Kristen Orser's (school pal and superb poet) latest chapbook. I think it's her latest anyhow, she's so prolific I have trouble keeping up. I was in Chicago for a few days recently and besides killing my shoulders hauling luggage through O'Hare terminal I also reconnected with a lot of good poetry-writing friends of mine.

I told them the abbreviated tale of my year as a medical mystery and like the wonderful friends they are, they were sympathetic and helpful. Maureen suggested tutoring as a way to make some money tax-free. I like the idea since it involves less commitment than a full-time or part-time job. It seems like a good way to stick a toe back into the world of 'work.'

And I have new plans to gather up poems for submitting. The anthology comes out in April, and I promised myself to have work out by then.

Half of today though, was spent writhing around in bed in pain. As usual, I could only guess what the cause of the injury might have been. I switched the mattress on my bed with my sister's. My mattress, a little older, has a dip in it, and because of that dip I'd been sleeping with my knees unintentionally hyperextended. So I switched. Then I made up both beds and cleaned the room, collecting my library books, taking out the trash and the laundry. I tried to rest in between. I don't know. In any case, within a couple hours I was crying and writhing around in bed. I dropped bombs of my own: tramadol, meclizine for the inevitable nausea and Lidoderm patches with ace wraps. Even so, I lost most of the day.

It is this problem of pain that prevents me from moving forward. In any direction. Like, as long as I want to do more with my life than lie in bed and cry (most people do) I have to figure something out.

I have ideas; I'll bring them up with my rheumatologist when I see her next month. In the meantime, my new goals include market research for poems, editing poems and applying to see if the hospital will write off my surgery on account of being p-o-o-r.

The Lie Is...

At the moment, my bedroom has no electricity. I open the blinds wide during the day and light six or seven candles every night. It's just enough to read by. I called the new rheumatologist who is managing my Ehlers-Danlos syndrome and told her I was in my second week of physical therapy, but I was still being overwhelmed by pain.

She recommended Icy Hot patches for pain in shoulders and back and said to let her know how they worked, because she was willing to wage war with my insurance company to get me Lidoderm, patches impregnated with lidocaine, a local anesthetic. I've heard good things, so I hope they work out.

In the meantime I've been losing a lot of sleep, taking Tylenol around the clock and even sneaking extra anti-inflammatories when I can.  The pain orders me around, determines when and if I do anything, and makes it impossible to plan for the future.

In a week I'll be in Chicago and I worry now about burdening my friends with my pain or possibly getting sick and having to go to the hospital. I HOPE this does not happen.

I cannot convey to anyone how it feels to have this awful disease. Not to my professors, not to my friends, not even to my doctors or my parents.  So, I feel as I did as a child, feeling that unique disenchfranchisement all over again, the distance between you and other people.

Going back to Chicago next week, I dimly remember the feeling of listening to my iPod on the L...watching the light cartwheel between the branches, the sound of the rails. I liked to sit backwards. I loved Chicago so much.

I had a grace period, where my body could compensate for my disease and I could live relatively comfortably. But as I aged past my prime, into my mid and late twenties, the system began to fail little by little. I could feel it happening and was terrified. What on earth was happening to me? I got short of breath, my heart would race, my vision would blur...I couldn't concentrate on anything and when people spoke to me, I couldn't understand what they were saying. The words were just sounds, the inflections preserved, but the meanings lost.

My doctors told me I was just having panic attacks, but that didn't seem right, and the medications didn't help.  And no one could explain the pain that started as a weak gnawing and at its worst left me writhing and sobbing.

This is such awful, self-fixated stuff. My mind should be a billion other places, but unfortunately it's tethered to my body securely and my body is in crisis. I long to work on poetry, but it's difficult to write in a crisis. Being sick yanks me this way and that, leaving little energy left over for anything else.

I read yesterday, "The lie is that the world is good." It certainly isn't good. Or fair.