Melancholy, Baby Or The Soundtrack of A Painful Morning on Short Term Disability

It probably doesn't help that I'm listening to Holly Golightly signing "Slowly But Surely", or that it's a grey, grey day, or that I'm still at home with a migraine/headache that has been constant since September 30th. 

This is a new and unpleasant experience for me...me from the family of "no blood, no foul" and my personal favorite, "you can find sympathy in the dictionary between shit and syphillis".   Me of the marriage to the man who is disabled with a chronic pain/neurological issue for the last 6 or so years and deals with it well.  No matter what, I was always the type of person to get up, find a way to fix things and move forward...that is what I do.

But right now I feel stymied by the cage of bureaucracy I find myself in--stuck between the bars of doctors and insurance companies and short-term disability organizations that all move on their own timeline regardless of what the other company, or patient needs.  I thought since I've been diagnosed finally with Occipital Neuralgia things would get easier with the paperwork, but actually not.  Go figure.

Am I receiving good care?  Yes, I believe my doctor has a firm grasp on the issues and is working a conservative, but smart course of treatment. And, as a bonus, I like and trust him.

But I'm realizing that "care" is a complex entitity for me.  Just like with your children when they are sick, medicine is never enough--they need the right blanket, the right stuffed animal, the right lap to be cuddled in.  The right story at night, the right whispered conversation in the middle of the night and the right silly movie from the couch in the middle of the day.

I doubt it's just me, but adults on short-term or long term disability need our own version of these things:  

My own version of my "blankie":  a call from the boss to check in on you, to let you know that you are still a part of team. Calls and notes from friends and families...not about getting well, but about connecting you to things outside of your own head and body. 

Things you can count on:  like the right records being faxed to the right entity without having to check and double and triple check.  Promised updates on your 'file' coming through when they are supposed to.  Knowing when you are going to get paid so that you can take care of your family.

Things you can accomplish: whether it is cleaning out the junk drawer in the kitchen or trying something new like knitting.  I've spoke of this before on this blog, but it's about having a "purpose", whether big or small, aside from getting better or well.

(Egads, now Richard Thompson is singing "Beeswing"--I've got to play something a little more chipper.)

Luckily, I have a great "blankie" with my friends and family, and I've got a good list of "purposeful to do" things that don't make my headache worse.  The "things I can count on" are a bit more problematic and cause anxiety which then rachets up the old headache....viscious circle.  

(Okay, Lords of Acid, "Let's Get High and Have Fun" sounded better in theory than practice...Now I'm back to Nina Simone, "Four Women".) 

The worst part of it all is feeling like you are being judged for taking Short Term Disability for something like a headache....even when I explain that it's been constant since the end of September.  Even when I explain the double vision, the nausea, the speech dysplasia, the pain that makes me want to grind my knees into a rocky asphalt road while hoping for a car to come by and just clip me a little.  It didn't help when my first doctor asked my husband, in the context of the FMLA paperwork, "How many times has she tried this?".  Me, a 60-70+ hour worker, who is always there for the people I work with and for!  Lowest point, definately. 

But I know where to find sympathy, right?  And relatively, I've got it easy...there are bigger problems in the world and people more worthy of an "emotional blankie" than little old me.  Besides, I've got Yoga tonight...that's good for at least two or three good giggles at myself.

So, I'm ending this with Hello Saferide and "Last Bitter Song". Fitting.

Yoga Made Me Cry, And The Rest of the Week

About 60 minutes into the 75 minute class, the teacher asked me to "grasp my sucess" or something of the like.  I couldn't.  In fact success wasn't just eluding me, it was fearsomely mocking me.  I felt like crying or puking, knowing me probably both at the same time.  We had just got done doing this meditation that required me to fold my right hand together with the thumb under (think about it as the exact wrong way to make a fist when you are punching someone or something), squeeze it tight as you can while attempting whistling and focusing on the end of your nose at the same time--and I think there was a special type of breathing that was supposed to happen at the same time. For me it was like trying to tap my tummy and rub my head at the same time--nothing came together and at the end of the 11 minutes I felt like a complete and utter failure.  I can't whistle, I kept forgetting to look at the end of my nose and I think I was breathing in when I was supposed to be breathing out.  The only good news is what I could hardly unclasp my hand and it hurt, (Yoga Claw!) so I gathered from the feedback that this was a good thing.

The teacher, who was actually amazing, soothing, funny and more made some mention, in general, at the end of the class about being a pre-beginners class and I' m pretty sure it was meant for me.  But no, I'm going stick out the regular old beginners class, so next Saturday I'll be there, fire breath, yoga marching and trying to direct it all to my third eye. Oy vey.

The rest of the week had ups and downs, but overall I'm feeling, finally, like I'm moving forward through this whole migraine from hell medical leave.

UPs: 

• The Austin Weather!  Cool, crisp with the scent of wood fires in the air.  At night, there has been the hint of moisture, so a little fog.  To me, this is perfect weather and I could live year round in it.  It makes for especially nice walks, both in the morning as a workout and at night meandering around the neighborhood with my husband. 
• The Fushigi Experience:  my daughter had been asking for the Fushigi (an anti gravity ball from a long-form commercial that promised magic, delight and it was theraputic!  After three months of mentions, she gets it for her birthday.  Twenty minutes later, the screams of "It's a rip-off" bounce around the house.  You ask why this is under an "Up"?  Well, first, it's funny as hell to hear your 8-year old ranting righteously about the magic ball being a rip-off.  And secondly, it's a good lesson for her to learn.  The Fushigi Ball now holds a place of prominence--a silver, glowing sphere on the mantle under the television.
• New Neil Diamond album!  "Dreams".  I'm not an undercover fan at all.  I love Neil, especially the stuff from the last decade or so.
• Deep Relaxation Yoga.  I have to admit that I've allowed myself to fall off the edge of curiosity  when it comes to yoga and I'm comfortable  building my wings, mistakes and all, on the way down. I even went so far as to by a CD and a lavender eye-bag so when I can do it at home.  The first time my daughter was interested in joining me and it was going well until the voice on the CD asked us to direct our energy to the "right buttock, the left buttock".  Sophia, standing up from her little rug, snorted and said, "I can't learn anything from a guy who doesn't know that people have just one butt!" and marched off to her room.  I wasn't sure if I should let that energy expand into the universe, but I figured it couldn't hurt.
• Halloween was fun!
• Something Is Working:  Whether it's the medications, the cortisone treatments, the better eating, sleeping, exercise or yoga...or all of it together.  My migraines/headaches seem to be leveling out.  They haven't gone away yet, but the seem to be settling into a manageable mode.  I'm looking forward to the next round of procedures and what positive outcome they can bring!

Downs

• In one of my first Deep Relaxation Yoga classes, the teacher asked us to think of and talk about a person in our lives, but who had passed away, who we tried to model ourselves after.  The majority of the women in the room, of all ages, and including me, brought up our Grandmothers and described them as "fearless, fierce, confident, strong, takes no bullshit".  It made me wonder if this generation would be described the same way by our granddaughters.  I'm not sure--I think we have a lack of good role femal, pracital and strong role models, quite frankly and are afraid of the "bitch" label.  When I think of strong and practical women, I have quite a few in my personal life--but only two in my global life (Hillary Clinton, Rachel Maddow and Eleanor Roosevelt).  I must find more, or as Eleanor said, "You must do the things you think you cannot do."
• I'm sick to my stomach and heart about this 'sound bite' society we live in now.  We all want things fixed faster than fast--the economy, healthcare, jobs, education, etc...yet we don't take responsibility for the fact that we all had a hand in creating the fiasco, and it took us a long time to screw things up so badly.  So instead of sticking to the person we voted in, we start searching for the next group of people who, regardlesss of their good intentions, won't be able to satisfy the needs in the time we give them.  It's a vicious circle that concerns me more and more and personally, I blame anyone 40 and younger...we should be smarter than this and we should have the determination to work the hard work to get it done right.
• Finally, and related to above, after living through this mid-term election I look back to something else Eleanor said and find it even more true today, "Sometimes I wonder if we shall ever grow up in our politics and say definite things which mean something, or whether we shall always go on using generalities to which everyone can subscribe, and which mean very little."  I think we all know the side we are erring on.

So, no books yet, obviously, but I'll get there.  As I will with the Yoga...hopefully without tears or arguments over whether there is one buttock or two with an 8 year old.  I just gotta keep remembering...in the future, I'm awesome.

Things That Are Supposed to Relax Me Actually Do The Opposite

Okay, a month now of consistent migraine, cluster headache, occipital neuralgia or whatever it is.  New Doc, new drugs, new possibilities, day by day I'm muddling through.

I'm trying to read each day, but it makes the headache worse more times than not, so it's a crapshoot.

I was able to sew up my daughter's school Halloween costume (Hobo)--as opposed to the one she is trick or treating in (skeleton), which was fun.  And we made two cakes together for her class Cake Walk at the school Fall Zamborree.  Loads of fun in the kitchen with frosting---thanks to Top Chef:  Just Desserts we even carved and other fancy stuff.  The pumpkin looked like a nice carved pumpkin.  The skull?  Not so much.  It was probably the last cake forced upon some wary winner.  Oh well, we are pretty sure it tasted good.

But these are very small moments in between a lot of sleep and a lot of cursing silently in a darkened room.  Not the way I want to live my life even for a short period of time.

There are two things I've been told time and time again by literally everyone that will help keep my brain free of pain:  exercise and things that relax you.  I now believe that "litterally everyone" hates me.

I walk because running is out...anythiing that bounces my head up and down or back and forth is out, which is problematic on a whole other level, becuase THAT relaxes me.  Irony much?

So, on the manufactured relaxation front I'm trying two things.  One, Yoga.  Not the bendy yoga for reasons mentioned above, but a deep relazation yoga and one called Kandalini (sp?).  Secondly, I'm attempting to take up knitting.

Knitting.  Or as I call it these days, 'Fucking Knitting".  Edvard Munch once said, "No longer shall I paint interiors with men reading and women knitting. I will paint living people who breathe and feel and suffer and love.".  If he was painting me, he could paint a woman knitting and suffering!  A two-fer for old Edvard...what a bargain for him except I think he already painted it...you know, The Scream.

I did the right thing...I bought what the internet said to buy in terms of needles and yarn and then I picked up Knitting for Dummies because someone said it had the best pictures.  It might.  In fact it probably does.  But the fact is that I didn't shoot low enough...I should have bought Knitting for the Absolute Idiot and maybe then I would, after a full week, be able to do more than cast on a few stiches before it goes completely to hell, along with my language.  This is neither satisfying nor relaxing and I end up back, cursing silently and possibly more inventively, in a darkened room.

In fact, this whole knitting debacle is so pathetic my husband is out right now at Wal-Mart attempting to get me a different set of needles and a different type of yarn...I love him for it, (and lord knows, this proves he loves me) but I'm not holding out much hope.  He also found and showed me the best apps on the iPhone for knitting, probably in the hopes that I'd stop muttering on the couch like a crazy woman.  I even went so far as taking my 8-year olds advice and called my Mother because as my daughter put it, "She can knit and talk to people, including Grandpa who is deaf, so she must be good."  I called, she was out, but my Dad got a great laugh out of it.

I will continue to work at knitting.  Probably, knowing myself,  for the sheer need to conquer it although I do hope to find some sense of accomplishment and moments of relaxation.

I'm not ready to talk about Yoga yet.  I'm trying to give it time.  All I have to say is that Deep Relaxation Yoga is painfully like what I do the rest of the time:  lie down in a darkened room cursing silently.

The Blessing of Double Vision!

I was trying to read the NYT online today, and it didn't go as well as hoped--glary double vision and all.  However, in the Fashion & Style section of all places (hello, Sports?), it did ask me "Can Paul Rabil Make Lacrosse Sexy?". 

Do they need to ask, seriously?    It reminded me of a line I read a while ago in a romance book that made me giggle: "He smiled then and made her heart spring like a lemming flinging itself into the sea." Best. Line. Ever.  And I could see it applied to my double-visioned person of beauty. 

And, maybe he'll be the one that will bring some positive press to the sport.

I know It's All Relative: I Cheer for the Chilean Miners, but Me? I'm Angry and Icky and Bookless!

Twelve days ago I got hit with my first migraine ever. Knocked me on my ass...hard. I drove myself to the hospital. Not the smartest move ever.  I don't remember much but some honking, so am assuming I drove really slow. Cause that's how I was feeling...sloooowwwwwww, distorted, like a off-kilter sound-wave.

I got to one hospital and got transfered to another and then spent five days on Dilauded (sp?) ...lots of it. Dreamy. I gotta say that for the first time I understand the whole addiction thing.

Got sent home cause I was "healed"...but unfortunately still have migraine. Saw some new doctors and they want me to wait for their new meds to take effect--up to two weeks. This makes me angry...I'm taking notes on how their meds are affecting me and I've got some suggestions, but no....I'm just the tottering, squinting, slow-talker they will see next Tuesday. 

There are a lot of sucky things about this...first is the fact that I don't know when this is going to end.  Everyone says it won't last much longer.  Everone else says they can't believe it's lasted this long.  So, I'm trying to stay on the edge of curious, but I don't do well when I can't see what's out in front of me. At all.

I guess it's not all bad.  My son did get some laughs telling the story about how Mommy projectile vomited all over herself and the passenger seat of the car when we were all stuck in rush-hour traffic on the way home from the doctor. He did not like giving up his shirt to me so I could wipe my face off, but that's the price you pay for funny.

Everyone, and I do mean everyone tells me to not worry, about anything. Is that possible?  Seriously?  How do I not worry about how the pressure is affecting my husband who is disabled and about how tired he looks, that my son has suddenly developed a lot of tummy aches, my daughter is suddenly obsessed about fairness in terms of good and bad people, about falling behind at work and putting pressure on an already understaffed department.  I am not the type of person who can lie still in a dark room not worrying about stuff even though her head would feel better if I smashed my hand in a car door.  Twice.  Hard.

Along with the pain in my head, my body feels gross.  I'm eating less because chewing hurts.  I can't stand the taste of my elixir of life, Diet Pepsi anymore, so I'm drinking more water than is possibly good for you.  Yet my skin is blah, my nails are cracky, my hair is so-so.   I find myself getting weepy when shows like Criminal Minds and NCIS use emotional quotes.  So you can see I'm a disaster.

Personally I think it's because of two things...First, I got no 'purpose'...it's not like I'm taking time off to "be at home" or anything, so short of trying not to puke when I move, or playing my new favorite game, "guess which of the double-vision objects is real", there's not a lot of reason in my life right now. I do NOT do that well. 

The second thing is that I can't read right now---I have multiple books just waiting for me to read them..and not just books, magazine articles, web articles, etc.  They are calling to me...all of that knowledge, all of those ideas that are waiting for me to find them. All of those wonderful phrases, sentences...the tempo of a beautifully written paragraph.  Sigh.  All of those bits of information that I put aside until they are ready to be useful for a friend, a client, my family.  It's driving me batty!!!!  More importantly, I feel lost without them on some level.  I do get to listen to my daughter read to me from "Alex and the Ironic Gentleman" by Adrienne Kress.  A really fantastic book for girls of all ages.

So, three hours later, I finish this one tiny blog...more than twice what it usually takes.  Mainly because brain is slow and cranky and double vision typing sucks...and I'm still without...without an end in sight, without an answer as to what to do and dammit all, without a book to read. 

But the fantastic news is that tonight when I totter off to bed, I will quietly kiss my kids goodnight, both of each of them

Guest Post by Luke Sullivan: Never Shop At A Book Store When You Are Stupid

NOTE:  I am lucky enough work with Luke, so I get to read his stuff all of the time.  I thought this was a nice partner to my previous post, so I asked him if I could publish it on my blog and he graciously agreed.  Luke is the author of "Hey Whipple, Squeeze This", his take on creating great advertising.  



You’ve probably heard that saying: “Never go grocery shopping when you’re hungry.” Well, it makes sense. You end up buyin’ all kinds of junk food that looks yummy, or buyin’ way more than you planned on.

Which reminds me of that time I went to a liquor store sober.

Dude. Big mistake. (“Awww, man, gotta get me some of this vodka. And this gin. Get some gin. Ooooo, tequila, get that.”)

 Well, wouldn’t you know it, just the other day I walked into Book People here in Austin…. and I walked in stupid. Because there is so much that I don’t know, well, suddenly I’m reachin’ for every stinkin’ book on the shelves.

(“Gotta get me the new Franzen book. Oh, man, and lookit this new Blackwell title, ‘Outliers.’ He’s so smart, gotta git that.”)
Man oh man, I nearly flattened the embossed numbers on my Mastercard.

You know what might cure me of this book problem?

The new Kindle. Reason I say that is because the ads say the new Kindle can store 3,500 titles. Three thousand five hundred titles?

Here’s the thing. I’m a pretty fast reader. On vacation, I’ve been known to put away a book a day. But even at my best, … 3,500 titles? Polishing off that digital bookshelf would take nine and a half years of constant speed reading. Even Evelyn Wood, the speed-reading queen herself, man, at around book #1,954 … wouldn’t she just blow up?

Do I really need to carry 3,500 books on vacation? A guy named Barry Schwarz wrote a cool book called The Paradox of Choice. His main thesis: “We assume that more choice means greater satisfaction when it fact it means less.” He posits that a massive number of things to choose from can make a person feel bewildered, then anxious, and ultimately less satisfied after taking a purchase decision.

I think I know what Mr. Schwarz’s talkin’ about. Can you imagine if the first iPod’s commercials promised “A Trillion Songs In Your Pocket.” Man, I’d just tip over at the concept of a mathematical eternity burnin’ a hole in my pocket. I’d blow up.

Don’t get me wrong, I happen to love my e-reader (an iPad). But I don’t think the main promise of a Kindle or an iPad is a Brobdingnagian memory. Just gimme a digital L.L.Bean tote’s-worth. Just enough books to get me through the Labor Day weekend.

Reading Requires All 5 Senses!

I read today, online ironically enough, that the Oxford English Dictionary will NOT EVER be printed again--only being available online from the 4th Edition forward.  (see amazing note at end)

Last night, my 10-year old son looked up from the book he got from the library earlier and asked for a Kindle. (Such a funny kid)

The apocolypse is upon us...no one will have to burn books anymore, they'll just have to delete them. Not as dramatic for those doing the burning/deleting, so hopefully satisfaction in that will go way down and thus will go away...but I digress.

The point is that with the move towards electronica, we risk losinig the context of touch, the meaning that comes from the visceral nature of books and not just from the act of reading it.  I agree with Anna Quindlen when she said, basically, "...that she'd be happy if her kids idea of decorating is building enough bookshelves."

Books have a feel, a smell, a heft, a non-biological warmth to them that not only adds to the experience of the read itself, but they add a context to the space they reside in as well--reading Anna Karenina would not have been the teenage pivotal experience (trite, I know) it was for me if it weren't for my ability to remember the weight of it splayed on my stomach as I dozed on the couch in the sun thinking about what I had just read, the feel of the pages under my hand.  Those visceral memories are a direct link to my growing understanding of language, literature, love, loss, and family--and now, simply knowing it is there in the house, occupying the same space, gives me comfort among other things.  
 
George Robert Gissing said it best:  "I know every book of mine by its smell, and I have but to put my nose between the pages to be reminded of all sorts of things." 

Later, giving my son a back scratch before bed, I ask him why there are so many books in bed with him, on his bedside tables, under his bed.  "I don't know Mom, I just like the feel of them, knowing that they are there with me."

"Would you feel the same way if there was a Kindle next to your lamp or on your bed?" I ask.

"Mom", he say disgustedly, "sleeping on a Kindle would be painful.  Besides, I like seeing them around me."

"Exactly."  I smile and kiss him goodnight, knowing that when he has his own house, he'll have lots and lots of bookshelves in it.  And that makes me happy.



Amazing note: The 3rd Edition of the OED has been in the works for 21 years and will take approximately 80 lexographers another 10 years to finish!  Wow!