Wednesday, February 27, 2013

The Practice of Writing

"It required a sophistication unavailable to me."

Toni Morrison said this about her first book, The Bluest Eye.

I have copied this line everywhere.  It is in my poetry journal so when I flip a page, there it is.  It's in a little picture frame on my desk at work.  It shows up on post-its and scraps of paper tucked into other things.  I carry it with me.

I have read no more accurate statement about what it is to be a writer who has big things to say and not yet the skill to say them.

The Bluest Eye is a classic.  Perhaps it would not be if Toni Morrison had not gone on to write Beloved and subsequently win the Pulitzer Prize and the Nobel Prize.  But alone, it is a book of potent, beautiful writing that tackles the complex issues of race and identity.  And the reader -- or at least I -- thinks the book tackles them successfully.

But Morrison herself does not feel the book is successful.  She sees, in retrospect, where the book falls short.  She sees what the book could've been if she'd written it in later years.

Would Beloved exist if Morrison had not first written The Bluest Eye?  Isn't every past work practice for the writing we are doing in the present?

There are subjects I want to tackle that I don't have the skill for yet.  My own spirituality, for example -- I've written pages of it, but how much of it is interesting or useful to another reader?  What is the purpose of sharing it if it doesn't bring some form of revelation to someone else's life?

Novels -- I have participated in National Novel Writing Month since 2003.  Of all those novels, three are worth others' reading -- I think.  But do I have the skill yet to complete them?  The one I'm wrestling with these days, I see the holes, I see the issues I don't know how to work into the rest of the story.  It drives me crazy.  In those most frustrated moments, I try to remember that I am practicing.

Poetry -- parts of poems riddle my notebooks, papers everywhere, and still I have trouble making them whole.  For me, poetry is the most difficult of all writing, and I think that's why I keep at it even though I feel I am constantly failing.  Again, it is practice.

And blogging.  Here I am practicing the art of blogging every day.  I have drafts left unpublished behind the scenes -- unpublished because I know they are not useful for other readers.  Do I have the skill to make them into posts worth others' reading?  I can tell that they are not useful, but I can't always tell what they are lacking.

The sophistication Morrison mentions -- I'm not sure I even know what it is yet.  But as I write, I must believe that I will eventually see how she could have improved The Bluest Eye.  I will have words to explain why The Bluest Eye is lacking instead of just that instinct we all have that senses when one book is better than another.

I must trust that someday, with enough practice, I will have the skill, the sophistication necessary to tackle those big things that I can't say yet but that are important enough for me to hold onto.

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Linking up with Yeah Write again this week!  Click through to read others' blog posts!!

Saturday, February 23, 2013

One Lovely Blog award

Bee, whose lovely blog is Living Off Script (and who also has another blog, where she writes fabulous fiction), has given me the One Lovely Blog award!  My duty now is to write 7-15 facts about myself and pass the award on to five other bloggers.

And none of these facts will have to do with vulvodynia!  But some may be repeats from the blog.  Like...

1. I am obsessed with the Terminator movies and will someday be buffer than Linda Hamilton.  I've been saying so for years but my chin-up ability goes up and down (from 1 to 3) as I don't have a lot of stuff to chin up on.

2. I have synesthesia, which is a duplicating of the senses.  So if I see something, I hear it and feel it; if I feel something, I hear it and see it; if I smell perfume, the entire room is pink, etc.  Yes, it is cool.  2 is yellow.

3. I just learned that there is an actual thing called Grammatical Pedantry Syndrome.  I used to be a grammar stickler, but in recent years I have stopped caring.  My un-pedantizing started when I learned that the Dutch pluralize some things with apostrophe-S (radio's) to preserve pronunciation.  So there is precedent for the logic, even if not in English.

4. I have been trying to write outside the v-blog more lately and it is giving my life a center.

5. I leave my wallet at home a lot, so I recently bought an iPhone case that holds my driver's license and debit card because let's face it, our phones might as well be implants.

6. I've been wanting to chop my hair but it hasn't been shorter than shoulder-length since I got a helmet cut as a four-year-old.  So please, tell me to chop my hair.  No don't!  No, please do!  No!!!!

7. After work the other day, I wanted to wash my face before I left, but there wasn't anything besides hand soap available.  So I made some green tea and washed my face with it, and my skin was sooooo soft afterwards.  Recommended.  Sometimes improvising works!

8. I can hear foghorns on the Cuyahoga River from my house.  It is a tantalizing experience.  (The Cuyahoga River, by the way, does not light on fire these days.)

9. Eight is a good number.  It is a dark-blue old man.  So I will stop at 8 with the facts.

Here are five lovely blogs:

Gluten-Free is Life by Kim - she writes about her & her son's lives with celiac disease (and she is my cousin!) (her son is (unbelievably) a teenager now).  Read her blog for all you need to know (and I mean ALL; she is an expert) about eating healthfully and gluten-free.

The Fons Four by Kelly - she writes about her life with her two (adorable) boys and her husband (and she is my cousin too!).  Read her blog for beautiful pictures and the story of a strong woman.

That Cynking Feeling by Cynthia - she writes about her life as a mother whose (adorable) son has autism.  Read her blog for some terrific writing.

Feminists with Female Sexual Dysfunction by K - she writes about her experience with pelvic pain and analyzes it deftly through the lens of feminism.  Read her blog for insight you won't get anywhere else.

Abide by Lydia - she writes about her time teaching at a small school in Miami's Little Haiti.  I doubt she reads my blog, but her blog is so worth the read!

See the side bar for other lovely vulvodynia & pelvic-pain blogs!  Most of those were updating pretty frequently when I started blogging, and all of them could've received this award.  If you have a blog or know of one that's not in the sidebar (and admittedly I have failed to add some blogs), please let me know!

Friday, February 22, 2013


My appointment with Dr. Howard went well.  Almost exactly as I expected, actually.

I don't have much to say yet from an internal perspective.  So here is a quick rundown of the salient points:

- As I was shown to the exam room, my phone told me twice that I have an appointment today with Dr. Howard.  Then it emailed me to tell me I have an appointment today with Dr. Howard.

- Dr. Howard is nice.

- He had me stand on either leg, bend forward, bend backward, asked me if I had any pain with each position (only lower back when bending back). He also touched possible sensitive points around my hips and asked me if I felt pain there (a little).

- He did a Q-tip test, and it felt like he was jabbing my vulva with a razor.  No surprise there.

- He ran the wooden end of the Q-tip down my abdomen and also along the panty line of each leg.  Lightly.  When it went over my bladder, my clit hurt.  It surprised me that the nerve link between my lower abdomen and my clit is so sensitive, but I've always known there is a link.  (In my mind it's the "Do not step there, cat" link.)


- He did an internal pelvic exam, asking where it hurt.  My inner right side is super-sensitive, which I already knew.  My bladder is also sensitive from the inside.

- He told me he thinks I have pudendal neuralgia.  Even though I feel pain on both sides of my vulva, he thinks the nerve entrapment is on the right side.

- He lectured (well, two sentences) me about not taking Neurontin at night.  (I've been fatalistic about it.)  He told me to take 600mg at night and that it can still help even if I don't take it during the day.

- He says my abdomen pain (from the Q-tip test) could be due to entrapment of the genitofemoral nerve.  I hadn't heard of that one before.

- He thinks my hip pain is related to the nerve pain, maybe as a muscle reaction to long-term pain.

- He says my pelvic-floor muscles are out of whack and that it's a chicken-and-egg thing with pudendal neuralgia.  The muscles can cause entrapment  Personally, I think they've become a ball of awful trying to hold my crotch in place so it doesn't hurt.

- He says the urethral and bladder pain are more often related to interstitial cystitis.  This surprised me.  I had two urologists tell me I don't have interstitial cystitis.  But he says IC can look like pudendal neuralgia and vice versa, or they can occur side by side, so it's hard to tell.

- He told me I have to push to pee because of my tough pelvic-floor muscles.

- When I left, it was snow-pelleting like a giant bean-bag chair had just exploded, or something more eloquent.

I'm going back for two guided (with a CT scan) nerve blocks in the Alcock's canal and some other place I can't remember right now and I don't see it in the brochure, both for pudendal neuralgia.  If those don't work, we'll try the genitofemoral nerve.  I am also to Take My Neurontin Every Night.  In eight weeks we'll see how I'm doing.

I'm also going to revisit the pelvic-floor exercises I learned when I did PT a long time ago because it would be nice to pee more freely.  Sometimes it happens by itself.  I feel like it's in part related to what I eat.  Eating better would be good too.  Yeah, it would.

Thank you for your support.  I can't respond individually right now because I'm wanting to put it in the back of my brain and let it do its own thinking.  But it means so much to me that people care!  It seems so obvious that I should've come here to see Dr. Howard long, long ago.  I am angry about it.  But I guess it could never have seemed as obvious as it seems now, after finally meeting with someone who is the right doctor to treat me.

Now I'm in my hotel.  It is a treat-myself hotel in downtown Rochester.


There are two conventions here this weekend.  Special Olympics and Narcotics Anonymous.  It's a bunch of world happening around me.  It's noisy and busy and distracting and perfect.


Thursday, February 21, 2013

Appointment time

Tomorrow is my appointment.  Friday.  Maybe you are reading this on Friday.

I am so nervous you'd think I've been standing on a tightrope.  It is not pretty.

I've leaped from explanation to explanation about why I am so nervous before landing just now on what it might be that I'm upset about---

I am just so embarrassed.

I am so embarrassed that my crotch hurts.  I am embarrassed to talk about it so much.  I am embarrassed to be depressed and anxious over it.  I am embarrassed that I've made life choices because of it.  I'm embarrassed most of all that I am such a sorry character in my friends' and family's lives.

This is a NO PITY post.  I'm already embarrassed that I'm pitiable.  Please don't pity me some more.

I've probably been embarrassed all along.  I don't know if blogging about it has helped me own my pain or if it's given me more reason to feel embarrassed about it.  Maybe both.

I might take a blogging break for a while after this appointment.  I need to remember that I am more than the things I report here.  I've been thinking maybe I will take dance or ice-skating lessons to reconnect with my body.  The few times in recent years I've gone ice skating and rekindled my old skill, I've felt like a superhero.

Thanks to everyone for your support and guidance.  I will post about my appointment this weekend.  I will probably be relieved afterwards and full of things to say.  But then maybe I will dial it down.

Wednesday, February 20, 2013

The Book Club at the Women's Shelter

I did not think The Bluest Eye was a good choice as the first book for the book club at the women's homeless shelter.  Most of the women at the shelter are black.  The book, by Toni Morrison, is about a black girl who wants blue eyes.  I have blue eyes.  Sensible AmeriCorps volunteer though I was, I felt like the elephant in the room.

A staff member at the shelter had thought the book would be a good pick for the club.  It's a classic; it provides for good discussion; it's written by a venerable black female author who could be a role model to anyone in the universe.  So I agreed to it, found several used copies, and went to the first meeting brimming with books and gift bags.

As it turns out, race has nothing to do with why The Bluest Eye was not a good choice for the book club at the women's shelter.  As far as I could tell, the women didn't care that Pecola is black, that Toni Morrison is black, that I have blue eyes.  What they did care about was that when you crack open the first pages of The Bluest Eye, you are hit with a story that you have to paw your way through.  It is beautiful, and it is difficult.

But this wasn't a literacy issue either.  No: the women in the club were perfectly literate.  All had graduated high school and one was enrolled in college classes.  When I handed The Bluest Eye to an older woman who was hiding behind her hair, she said she'd read it before.

Instead of all the possible reasons why The Bluest Eye wasn't a good choice for the book club, there is the most obvious reason, one that has nothing to do with race or literacy.

We closed the book and my next few sentences probably began with Or.  "Or whatever you want.  Or are there books you've been wanting to read?  Or what about James Patterson?"

At "James Patterson" the room came alive.  They had read all his books and wanted to read them again.  Titles flew back and forth so fast that I had to scribble to get them down, one after another after another -- and now we were on to authors I had never heard of, authors of fast-moving books of over-the-top drama, girls beating a staffer at their foster home nearly to death before running on to be thieves---

These were women who had just aged out of foster care, women who had been living in the shelter for years, women fighting for custody of their children, for solid futures, for solid footing.  They read to get out of their situations and into worlds that were more dramatic and often more horrible than theirs were.  They wanted to cross the boundary of reality, to leave it behind much like the romance-novel enthusiast with her wildflower fields and her muscled beau.

So I found the books they asked for and took them to the shelter.  The women read so fast that I didn't even try to run a formal discussion group, but I made sure always to have something new for them to read.  And as I watched them speed through the books week after week and bubble with delight at new titles, I realized that reading was each woman's road out while she plotted her next step forward.

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Joining in at Yeah Write this week.  Click through to read others' blog posts!  Voting runs all Thursday 2/21.

Sunday, February 17, 2013

I gotta get my head out of my vulva

My appointment with the specialist is at the end of this week and I am going toe-tappingly crazy waiting for it and anticipating what might come out of it.  My head, yes, is consumed by my vulva.

I was excited for a long time but now I'm getting magical thinking about it, like if I rotate something the right way I will get a good outcome at my appointment, or if I don't touch my right ring finger to things, or if I pick the right color socks to wear.  I'm told this is mild OCD but frankly, I am tired of talking about my entire life in terms of illness.  It is superstition.  It is begging the fates.

I think I will take a break from blogging after this appointment.  A break from everything vulva-related.  I feel like I've been acting as if I have a mission about vulvodynia lately, more so than ever, and it is only making things worse.  I think of people who march about things.  They are very strong to march about things that affect them personally.  It eclipses the rest of life to think about a problem so much.

I think this is what it was like when my vulvodynia first started, especially those several months before I knew what was going on.  At least these days I know what's going on.  I'm just scared of what good may come, and I'm scared of what good may not come.  How strange to wonder how I'll cope if my pain goes away.

K wrote at her blog, Feminists with Female Sexual Dysfunction, "I’ve often thought to myself, ‘If I have a lid on the painful sex and chronic pain, why am I still depressed?! I should be happy for that reason alone!’ Nope. It worked that way for awhile! But then it didn’t anymore."

If it ever happens that vulvodynia is not a major problem in my life... what will I do with myself then?

I once promised I would do cartwheels like the chimney sweeps do in Mary Poppins.  Okay.  Focus on that.

Saturday, February 16, 2013

Holding down a job when you are mentally or physically ill

As I was getting ready to graduate college, I wasn't sure I would ever be able to keep a full-time job.  That year, I had missed -- as a professor reported to me -- maybe a third of my classes.  I had more than a dozen problem sets to finish so I could graduate -- for quantum mechanics, no less, which is not something you want to do on the run.  I didn't walk at commencement because I didn't want everyone looking at me.  I got home and had music to finish writing for my composition class, again so I could graduate, having declared an incomplete as I left.

I had had to call off randomly at my job leading up to that year because my anxiety would kick in and keep me from opening my front door.  Which is also why I missed so much class.

I stayed at my parents' place a month and a half after I got home, then I moved out without a stable job.  It took me 2 months to take a job as a waitress.  In the meantime, I lived on the money my family members had given me when I graduated, which wasn't a ton.  I had very little furniture and used a free AOL trial for internet.  I didn't have a cell phone, and I have no idea how I ate.

Okay, I'll stop bragging about how much that part of my life sucked.

And tell you that I was wrong when I thought I would never be able to hold down a job.  I had thought so because I had been mentally ill enough to not leave the house for large parts of college and keeping up with my schoolwork seemed impossible.  The smallest stress turned me upside down.

I told you a while back about a customer lecturing me about my disposition the morning after I had been awake all night with my clit ringing at me.  But I am lucky to have had vulvodynia intrude on my employment very rarely.  It has kept me home from work maybe five times over its course.  Some days, I have barely been able to walk, but that doesn't always keep me home.  The last time it happened, I still went to my psychiatrist appointment.  I stood in the waiting room with my urethra twitching at me telling me to pee.  I don't know why I went or how I did it.  It's as if when my pain is worst, I get the most determined to dominate it.

I have been showing up to work late.  This is not something I want to do.  I am a late person in general, a time dilator.  If it's 8:07 now, it will still be 8:07 when I finish my current task.  I don't sense time passing.

Maybe it's a response to all the stress I experienced in college.  A survival mechanism.  If I worry about time, I'll be even more stressed, and then instead of just upside down, I'll be rotating through other dimensions.

Lately, despite the new medication, I've been waking up anxious.  So this slows me down even more, and I get to work 15 minutes after my 8:30 start time.  One day my boss emailed me about it.  He told me I had shown up at 8:46 and that it had become the norm rather than the exception.  He told me it is unprofessional and that I am to call when I'm running late.

I wrote an email to him in response.  I want to post it here because it is witty and devastating!  But of course I won't.  And I didn't send it either.  I saved it in my personal email's drafts so I can laugh at it once in a while.

Here's the point of this whole post: there was a time when I thought I would never be able to hold down a job.  These days, I show up fifteen minutes late to my job.  Every day.  Because I go every day.  I open the door and I walk out and I drive there -- and then I get out of the car when I get there.  If my boss wants to fire me for being fifteen (or sixteen) minutes late every day, he can and I won't argue.  I agree that it's unprofessional.  But I've never lost a job or had to quit because of bipolar disorder, and that is a victory every day.

I've had to quit because of vulvodynia.  Vulvodynia combined with anxiety.  Put that experience together with my time in college and I value even more what it is to be well enough to work.

Sunday, February 10, 2013

The Sweetest Strawberry

"Gotta go someday," my grandpa said last night.  "Any time now!"

This is a sad statement if you don't know that when my grandpa's deep-as-a-whale's voice rises to a tenor's pitch, he is telling his best jokes.

I've been waiting for my grandpa to die for years.  In 2004 he suffered a pair of small strokes, and that's when I first felt the rupture of realization that yes, someday he will die.  But it's probably been my whole life that I've been waiting.

He's been more and more immobile ever since I was a kid.  The earliest I remember, he would fall asleep reclined all the way in his plaid chair while us kids continued to watch TV.  Then, awakened eventually by the television, he would rock his chair forward and back, still reclined, before launching himself to standing.  There he would pause, steadying, before shuffling through the kitchen and off to bed.

Last night, he sat in his wheelchair at the end of the table, the end that is proud in any household.  He sat with his "Don't Forget My Senior Citizen Discount" sweatshirt on, dinner's crumbs and some salad dressing dribbled all over it.  He eats like a baby, singularly focused on the event.

"Dad, you've got some dressing there on your chin," my uncle said.  My grandpa picked up his napkin and wiped away half of the ranch dressing that had run down the side of his mouth.  He used to do this more self-consciously.  These days, he does it absently, perfunctorily, so he can get back to eating.

After dinner, he launched into his act for his audience.  Sometimes his jokes can still kill, like when he came back from senior citizen's daycare a couple months ago and told us that all the ladies had been after him.

"They are all so old!" he said then.  "I kept telling them I'm married!"

Last night, his jokes weren't so lucid.  Our laughter was nervous.  At one point he was aghast when he thought my grandma said they had to pay to use the downstairs bathroom.  My grandparents don't have a downstairs bathroom.

Usually, as dinner ends, the others run to the kitchen to clean up while he and I are still eating.  Then I take our plates, give them to the dish washers, and return to the table so he's not alone.

One dinner -- it may have even been for the birthday I share with my grandma -- our dessert consisted of everything I was avoiding.  I had decided that eating as purely as I could would cure my vulvodynia, and dessert was never pure.  But there were strawberries that dessert.  Someone set the strawberries out before the other things, and my grandpa and I each took one.

Suddenly, I felt like my life was being stripped from me.  First it was chronic pain and now I had so little left to eat.  I turned my eyes down so my grandpa couldn't see them.  No matter his degree of presence, he still picks up on others' emotions.

Then I remembered the Buddhist fable about a monk who falls off a cliff and grabs a branch on the way down.  Above is the tiger that chased him off the cliff.  Below, waiting for him to fall, is another tiger.  He knows he is going to die.  Then he sees a strawberry on the branch.  He plucks it and eats it, and it is the sweetest strawberry he's ever tasted.

Sitting there eating strawberries with my grandpa, whose death I had been awaiting forever, that was the sweetest strawberry I had ever tasted.

Last night we had pound cake, which I again abstained from.  My uncle -- the birthday honoree -- was dishing out the cake with a smattering of berries and whipped cream.  Grandpa got the first plate, which he started into immediately.  The other plates came one at a time, mine with blueberries and strawberries alone topped with whipped cream.  They were delicious, perfect.  They made me think twice about whether it is winter.

After dessert is when grandpa told us he is going "any time now."  And he is.  It is a luxury to have been waiting all this time.  It makes every moment with him sweet.

= = =


Tuesday, February 5, 2013

Throwing out condoms

I had a box of condoms expiring in December 2010.  I'd bought them in October 2006, the same month my vulvodynia had started.  I'd bought them to have sex with the guy who -- I could say -- caused my vulvodynia.

But I won't say that.  My vulvodynia is probably actually pudendal neuralgia, or entrapment of a nerve that is supposed to be fun.  It could be an injury.  I fell on my butt a ton as a middle-school ice skater.  Maybe it was that and not the guy.

It was now October 2010, four years after my vulvodynia had started.  For eight months, I had managed to have a regular sex life with the first guy I had dated seriously since October 2006.  He had been living at my place.  Now I had pulled these condoms out of a tumble of clothes in my dresser because I was packing up to move into our new place.  And I was going to throw the condoms away.

But first I had to see if they were expired.  December 2010 -- I had succeeded.  I had had sex before then.  After the October 2006 guy dumped me with a "maybe later," I thought I would never use a condom again.

So I tossed the condoms.  I tossed some other things too.  Thong things.  The British one, the angel one, the one that was clearly made to stick out of the wearer's pants.  Those were other things I was sure I was never going to use again.

Two months after I tossed out the condoms, my boyfriend tossed me out of our new place.  Or I tossed myself out.  I had been sitting on the toilet in pain.  He was in bed.  I came to bed crying.  He asked, "What do you want me to do?"

"I just need a hug," I said.

"I can't deal with you being sick like this."

"Well, maybe you should find a girlfriend who isn't sick."

BANG, his fist on the headboard.  He jumped out of bed, went into the bathroom, threw shut the door, threw it open.  I jumped out of bed and ran down the stairs.  I wanted to drive away but I didn't have any clothes on.

He screamed down the stairs at me and got back into bed.  I went back upstairs and screamed at him.

"You just broke us up!" I said.

He said nothing.

I almost packed up the cat and left.  Then I did.  Then I unpacked her and lay on the edge of the bed touching my boyfriend's back.  I think I fell asleep.

The next day, December 14, 2010 -- had the condoms expired? -- I moved out.

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Another week, another post for Yeah Write's challenge.  Click to read more posts and vote for your favorites!  Voting runs all day Thursday 2/8.

Saturday, February 2, 2013

How Vecepia won Survivor

Our office had a snow day yesterday, so we worked from home.  I'm not set up to work standing at home yet, so I sat on the couch.  And pissed the duxk out of my hips!

I tempt pain this way.  I think it is stubbornness.  "I should be able to do this, so I will."  I should be able to sit on the couch, sit to work, eat more than a touch of sugar.  So I will.

It got bad enough yesterday that I was spinning as I was trying to fall asleep.  But it wasn't my cooch itself that was so bad -- it was a donut-hole-sized spot of pain northeast of my tailbone.  I also had an eclair-sized swath of pain along the front panty line of my inner right hip.  And my right hip had started freaking out when I moved.

I forgot all this hip stuff when I filled out the survey for Dr. Howard.  It must not've been acting up -- probably because I had been standing at work and reclining at home.  So I will write the hip details up for him since I have trouble remembering everything in the presence of doctors.

I think the hip problems might be nerve problems.  But in November, my mom had a hip transplant after years of limping and pain due to arthritis.  I am too young for that, right?  An x-ray a couple years ago showed no arthritis, so I bet I am.  Right?

So I had this thought and I'm going to share it without looking it up.  Season 4 of Survivor, Vecepia won.  And after she did, she reported that she had changed her screensaver, or something, to something like "I will win Survivor.  I will win $1,000,000."  I can't stop my optimism right now, and I'm thinking that the thought patterns like the ones I'm having are how Vecepia won Survivor.