Category Archives: more than meets the eye

Two years ago

Two years ago they hadn’t found a way to treat my rheumatoid arthritis.  Two years ago I was a usual visitor to the emergency room when my pain would get so bad that only narcotic injections would stop it.  Two years ago my vacations always ended in wheelchairs, I took drugs that made my face unrecognizable and made clumps of my hair fall out.  Two years ago I was obese, because my meds made me swell up and because just walking across the room made me want to scream.  Two years ago I thought that I was a burden on my family because I spent more time in bed than I did out of bed.

A year and a half ago my doctor got approval to start monthly injections.  They worked.  They don’t work for everyone.  I pray that they continue to work.  I was able to walk.  I was able to move.  I was able to live.  I lost 46 pounds.  I got rid of the steroids.  My hair started to grow back.  The pain that used to be a 9 is now a 2.

Yesterday my doctor looked at my x-rays and said that some of the deformation we thought would be permanent had healed.  And she said a lovely word.

“Remission.”

It’s a lovely word for two reasons.  One, because I remember the pain…and in the place where that pain was is a space left for gratitude.  And two, because it gives me hope.

10 years ago my mental illness got so bad that I finally got help.  At first it was worse, then it was better, then worse again.  Now I fluctuate, waiting out the darkness, reminding myself that depression lies and that it’s a medical condition that I never asked for, quietly battling with tiny demons in my head…until it suddenly passes and the drugs kick in or the seratonin settles or the demons get bored and then HALLELUJAH I’m alive again and things are good and I remind myself that this, this, THIS is real and this is worth waiting for each time.

One day I know that they’ll will find a cure for whatever it is in my head that randomly and unexpectedly clouds things up and makes life turn into a pale, cardboard imitation.  One day they’ll find a cure.  A drug that works.  A shot that makes the demons go away.

A remission.

And I cling to that.  Because that, my friends, is a beautiful word.

PS. I wrote a week ago about how I’d been diagnosed with a severe b12 deficiency that might be causing some of this depression.  I’m on pills and shots and massive amounts of other pills to help the b12 work and I feel okay today after a week of slight craziness.  14 pills a day isn’t ideal, but I’m worth trying every option.  You are too.  Keep breathing.

Hush now

PPS.  Back to silly, cat-focused ridiculousness tomorrow.  I just needed to write this.  Thank you for listening.

Something about September…

So, yeah.  This is a purposely disjointed post because it’s too heavy and triggering to stand alone so I’m going to add something light and (somewhat) lovely at the end.  For once, my disorganized posting is actually non-accidental.  This is cause for celebration, although the comment section might be incredibly confusing.

So here’s the first subject, and it’s not fun but it’s fucking important, so listen.

This week is Suicide Prevention Week.  I always appreciate that it comes in September because there’s something about September that wants to eat you.  I don’t know why.  I just know that depression lies and it lies the loudest and most convincingly in September.  That’s why today I’m reminding you that suicide hotlines are amazing and have saved me from self-harm on numerous occasions.  If you need someone to talk to, or if you’re someone who knows a person who needs help and you need advice on what to say or do, call.  That’s what they’re there for.

Also, because so many of us are online, this page about safety teams on social media sites can be crazy helpful.  (Not sure if there’s a non-American version of this.)

Here are some good numbers to have:

Suicide Prevention Lifeline (US)

Canadian Mental Health Association (Canada)

Befrienders Worldwide (International)

Also, To Write Love on Her Arms is doing a fabulous thing where they’re asking you to share why you can’t be replaced.  It’s a perfect reminder of why you’re important and it’s a bad-ass way to flip it around and tell other people why you think they can’t be replaced.  If you can’t think of anything to write on yours then ask your friends or family to fill it out for you.  You cannot be replaced.  Trust me on this one.

Here’s mine.

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Okay.  That was a little dark, but sometimes you have to visit the dark to appreciate the light.  And now for the light…

This month Hailey turns 9 and I wanted to bring cupcakes to her class but there are some severely allergic kids in there and I don’t want to accidentally kill them.  Instead I was considering just bringing all the kids a book.  Around age 9 was when I realized that books were slightly better than cupcakes, so I think it might go over vaguely well but now I can’t pick a book.  I wanted to do Magic Trixie or Coraline, but I’m afraid there are some uber-religious kids in the class who might not be allowed to read anything magical (and that made my heart hurt just writing it) and so now I’m not sure what to get since almost all of the books that Hailey and I read are a bit dark or objectionable-in-the-best-possible-way.  What was your favorite book when you were 9?  Any recommendations? (Ideally under $10 and good for any gender.)  I’m leaning toward Hank the Cowdog but is that one of those books that everyone already owns by age 9?  Help.

Updated (9-16): Holy crap, you people have some amazing suggestions and I’ve started a whole reading list for Hailey just based on these comments.  In the end I took your suggestions to talk to the teacher about ordering from Scholastic and she was crazy helpful and I was able to get about 100 fantastic books to give out to the kids and to be used as an impromptu lending library.  They had Bunnicula for a dollar so I bought dozens of those and I plan on buying more and handing them out on Halloween for All Hallow’s Read.  Also, I’ve never read A Wrinkle in Time, but so many of you suggested it that I bought it on Saturday and Hailey and I are already halfway through it.  It is spectacular.  Thank you.

I didn’t eat anyone that I know of.

So…yeah.

That last post.

I don’t even know where to start except to say “Thank you.”  Thank you for making me feel less alone.  Thank you for giving myself permission to have as much compassion for myself as I do others.  Thank you for reminding all of the rest of us that we’re each fighting our own battle and that we deserve more than just a few days of I-AM-KICKING-ASS happiness a month.

I’m still reading the comments.  I’m still trying to figure out a solution.  I’m still looking at the books and goals and therapies you suggested.  But the one thing that seemed to come out more often than anything was the fact that we judge ourselves by incredibly high standards that are unattainable or which are impossible to keep up without crashing.  We remember the things we didn’t do well and seldom congratulate ourselves on the things we do fantastically.  Even in success we don’t give ourselves the chance to really appreciate what we’ve done and what we have.  And that’s why I’m going to do two things.

First, I’m going to lower the goddam bar, because right now it seems so high that it scares the shit out of me and I get paralyzed and I end up accomplishing nothing.  Instead, I’m going to try to set more attainable goals.  Instead of “finishing a book” I’m going to “work on a chapter”.  Instead of cleaning out the garage I’m going to clear off my desk.  Instead of staring at the 320 things on my To-Do list, I’m going to spend the day answering the emails I’ve been avoiding.

The second thing I’m going to do is to celebrate my small victories and scratch out all the things that make me unable to see them without shame.

This year I lost 42 pounds, but I’m still really overweight.

I went to the Parent-Teacher meeting and I was the only parent who didn’t know anyone there.

I got invited to speak at a lot of conferences but I turned 90% of them down because I’m scared to talk.

I’m writing my second book but it’s different from my first and maybe people will hate it.

I have to take a shitload of drugs so that I am normal.

And then there’s this:

Last week a woman asked if she could buy one of my weekly-wrap-up spots to promote her zombie-game kickstarter but I turned her down because I didn’t have any spots left.  She thanked me anyway, and then she sent me one of the cards they’re working on for the game.

It’s a motherfucking zombie me, y’all.

(Zombie art by Tommy Arnold)

And as I looked at it I realized that maybe I’m not that great at being a person, but I’d probably be a kick-ass zombie and perhaps I’m just in the wrong occupation.  Then Victor pointed out that “flesh-eating zombie is not an occupation“, but I assume he just thinks that because he judges work based on paychecks rather than on personal fulfillment, and then I told him that he just didn’t understand because he’s a Republican, and he countered that even Democrats usually recognize that being a zombie is not a vocation to strive for, and that’s why I’m looking into becoming a Libertarian.  Regardless, looking at that zombie portrait I realized that if I was a zombie I’d be out eating people right this second, and that would be a shitty thing to do.  It ruins everyone’s day and is probably not sanitary or covered by insurance.  Plus, I assume people taste gross.  I had steak tar-tar once and I thought I was going to vomit on the plate, and I ended up cooking each piece with my lighter and I almost set the tablecloth on fire.  The point is, even if I accomplish nothing today, I didn’t eat anyone.  That is a win.  For everyone.

The bottom-line is, there’s something very nice (and vaguely Stuart Smalley) about affirming something you accomplished and also recognizing something awful you avoided.  I highly recommend it.

I’ll go first.

This week I wrote two pages in my new book and I don’t hate them.  Also, I didn’t eat anyone.

Now you.

PS. The zombie-kickstarter game people didn’t pay me anything for this and, in fact, I ended up sending them money to fund their project.  This might seem generous, but keep in mind that they sent me a zombie portrait even after I told them that I wasn’t able to help them at all.  Sometimes kindness just begets kindness and just keeps going.  And sometimes that kindness needs to start with yourself.  Be nice to you.  I like you.  I will not eat you.  (Unless you want me to and we’re starving to death on a deserted island and you’re already dying of something.  Then I might eat you.  But I would cook you first.  Because you are worth it.)

Is it just me?

Okay.  This isn’t a funny post so feel free to skip it.  I just need to know something and I need you to tell me the truth rather than just make me feel better, so please be honest.

I realize that I’ve accomplished a lot in life and deep-down I know that, but it doesn’t change the fact that I only have a few days a month where I actually felt like I was good at life.  I know I’m a good person (as in “not evil or intentionally arsonistic”), but I’m not very good at being a person.  I don’t know if that makes sense and it’s not me fishing for compliments.  Please don’t tell me the things I’m good at because that’s not what this is about.  It’s just that at the end of each day I usually lie in bed and think, “Shit.  I’m fucking shit up.  I accomplished nothing today except the basics of existing.”  I feel like I’m treading water and that I’m always another half-day behind in life.  Even the great things are overshadowed by shame and anxiety, and yes, I realize a lot of this might have to do with the fact that I have mental illness, but I still feel like a failure more often than I feel like I’m doing well.

My pride that Hailey is the best speller in her class is overshadowed by the embarrassment that I don’t have the energy to be a PTA mom.  I’m happy my first book was so successful, but I suffer with writer’s block so much that I’m always sure I’ll never write again and that I’ll never finish my second book.  I feel like from the outside looking in I seem successful and happy, but I can’t help but think that if people looked closer they’d see the cracks and the dirt and shame of a million projects that never get done.

Part of this is me.  I have depression and anxiety and a number of personality disorders that make it hard for me to see myself correctly.  Part of it is that I judge myself by the shiny, pretty people I see at Parent-Teacher meetings, or on Facebook, or on Pintrest who seem to totally have their shit together and never have unwashed hair.  They never wait until Thursday night to help their kid with the entire week’s homework.  They don’t have piles of dusty boxes in corners waiting to be opened from the move before last.  They have pretty, pastel lives, and they are happy, and they own picnic baskets and napkins and know how to recycle, and they never run out of toilet paper or get their electricity turned off.  And it’s not even that I want to be one of those people.  I fucking hate picnics.  If God wanted us to eat on the ground he wouldn’t have invented couches.  I just don’t want to feel like a failure because my biggest accomplishment that day was going to the bank.

I just need an honest assessment to see if this is just me (and if I need to just find a way to change, or to increase my meds) or if this is just normal and people just don’t talk about it.

Please tell me the truth (anonymous answers are fine).  How many days in a month do you actually feel like you kicked ass, or were generally a successful person?  What makes you feel the worst?  What do you do to make yourself feel more successful?

Please be honest.  Because I’m about to be.

I feel successful 3-4 days a month.  The other days I feel like I’m barely accomplishing the minimum, or that I’m a loser.  I have imposter syndrome so even when I get compliments they are difficult to take and I just feel like I’m a bigger fraud than before.  I feel the worst when I get so paralyzed by fear that I end up cowering in bed and fall further and further behind.  To make myself feel more successful I spend real time with my daughter every day, even if it’s just huddling under a blanket and watching Little House on the Prairie reruns on TV.  I also try to remind myself that most of idols struggled as well, and that this struggle might make me stronger, if it doesn’t destroy me.

I’m hoping that by writing and posting this it will make me face this head-on and make some changes, either by forcing myself to change the way I see success, or by forcing myself to get shit done and stop feeling such dread and anxiety every day.  I’m hoping that I’ll get hints from you guys about what you do to feel like a good, successful person, or what you avoid that I can try to avoid it as well.  I’m hoping to stop the voices in my head.  At least the ones who don’t like me very much.

Your turn.

PS. For those of you who are new here, I’m already doing cognitive therapy and I’m already on a lot of drugs for anxiety, depression and ADD, but I’m really fine.  Honestly.  I just want to be better.  I’m just struggling with being human and I could use some pointers.  My guess is that a lot of us could.

PPS.  When things get bad this song helps me.  It might help you too.  Put on your headphones.

PPPS.  The Oxford Dictionary says the word “arsonistic” doesn’t exist, but it totally does.  It’s the same thing as being artistic, but instead of being sensitive to or good at art, you’re just really good at arson.  Then again, this is is the same dictionary that just added “twerk.”  I question everything now.

PPPPS.  Sorry.  This post is all over the place.  My ADD drugs haven’t kicked in yet.  I’m failing at writing a post about how I’m failing.  I think I’ve just set a record.  A bad one.

Happy anniversary, Victor.

In a few minutes it will be the 4th of July.  It will also be mine and Victor’s 17th anniversary.

I usually celebrate anniversaries with giant metal chickens, or unexpected sloths, or tiny kangaroos in the house, but this year I’m celebrating quietly and with dignity.  Mostly because the live llama delivery place said they don’t work on holidays.  And also because murderous gallbladders are taking up too much of my time this week.  And because I think my husband deserves one small day of respite without dealing with the assorted insane shit that comes with being married to me.

See this picture?

Me and Victor. And Victor and me.

It looks like a before-and-after picture done in reverse but it’s actually me and Victor at around 20, and me and Victor nearer to doubling that number.  We’re older, less skinny, and we’ve perfected the art of bickering to the level that it’s a damn point of pride.  We’ve traveled halfway around the world and back.  We’ve seen howler monkeys in the deep jungles, canoed blindly through swamps, and watched entire seasons of Game of Thrones in a single night.  We’ve seen each other at our worst and at our best, and whenever things seemed at their darkest one of us always said, “It will get better.”

And, somehow, it always did.

We’ve watched each other develop (and occasionally been the cause of ) new grey hairs and wrinkles as we wander this strange path with our wonderfully curious daughter, with our baffled families, and with you…our friends.  Yes, you.  If you’re reading this you are a part of our odd journey and I thank you for joining us on it.

Here’s to another 17 years.

I’ll see you on the other side.

PS.  On the other side there are llamas.

I’m coming out of this. Eventually.

Me: I’m having a nervous breakdown.

Friend: I’ll bring the wine.

I’m not sure which wine pairs best with a nervous breakdown, but at this point I don’t really care, because wine.  That seems like a sentence fragment but it’s not.  “Because wine” is a full sentence and is also an answer to just about anything you could ever ask.  “Why should I leave my house?”  “Why am I crying at an insurance commercial?”  “Why do my cats all have mustaches drawn on them?”  BECAUSE WINE.

In fact…why does this post exist?  Because wine.

And also because I’ve been fighting through a bitch of a wave of depression for the last several weeks and I’ve been slogging through the days and going through the motions and waiting for this shit to finally break.  I’ve been forcing myself to leave the house as much as I can and congratulating myself for showering and moving and breathing, but it’s still hard as hell.  I’m not alone.  In the last few weeks I’ve gotten tons of comments and emails and tweets from people all feeling equally helpless.  And that sucks.  It sucks for them, and it sucks for me and it sucks for every person out there who can’t just fix us.   There is, however, one bright point about getting those messages from others sailing their own rough waters…I can – without doubt- tell them that depression is lying to them and that things will get better.  And then I have to admit that the same thing applies to me…even though at the time I’m fairly sure my emotions are dead forever.

And then, just as quickly as it came, it starts to lift.  Yesterday I felt human again for almost two hours.  It’s amazing how much you’re missing in a depressive state until you start to come out on the other side.  It’s like breathing again after being underwater for far too long.  The depression is back again now but I had an hour this morning when I was me again.  And a few minutes ago I called a friend to come over to visit.  That sounds like a stupid, small thing, but it’s not.  It’s big.  It’s huge.

When I’m in a depression I want to write about it, but I usually can’t.  I’m too overwhelmed and paralyzed and exhausted.  I end up writing 100 angsty drafts that never see daylight and I convince myself that no one cares.  It’s not true.  People care.  They care about me and they care about you.  If you’re feeling alone, you aren’t.  Millions of people struggle with suicide and depression and mental illness.  We keep taking pills.  We keep talking to shrinks.  We keep each other alive.  We remind ourselves that depression lies.  We keep breathing.  And eventually the clouds metaphorically part and – as if by magic – we get a blast of normalcy and remember how amazingly wonderful it can be to feel life instead of suffer from it.

Yesterday I started feeling life again, and it felt wonderful.  And I’m writing this to remind myself that it does pass, and that the miasma surrounding you now won’t always cling to you.  It will pass for me and it will pass for you.

Keep breathing.  Keep living.  You are worth it.

PS. This seems unrelated and maybe it is but I’m including it anyway because wine.  A few years ago my blog posts were peppered with humorous stories about my severe rheumatoid arthritis.  I’d be bedridden for weeks at a time.  I was in and out of hospitals.  I spent most vacations in a wheelchair.  It took many years and lots of different meds and doctors before they finally found the particular drug that cured my symptoms.  It isn’t perfect and it’s crazy expensive and involves a lot of injections and constant work, but (knock on wood) I haven’t been in a wheelchair in over a year.  I had started to think that my whole life would just be random weeks of pain and that I’d end up hobbled and miserable, but then we found that one drug that worked for me.  And if there’s a drug out there that could save me physically then I have to believe that one day there will be one that could save me mentally.

I’m holding out for that miracle.  Stay here and keep me company.

PPS. If you’ve found something that works for you, feel free to share it.  For me, it’s music. This song has been on replay for me all week and it helps.  Maybe it’ll help you too.

In The Library

For those of us with triskaidekaphobia the year 2012+1 will be an entire year of forced behavioral therapy.

It’s a stupid superstition but one I still struggle to shake as (for me) it’s wrapped into a weird layer of OCD-based terror.  In my mind, every time some one says the unlucky number, everything becomes unlucky for everyone who has just heard that number, and only saying it again will cancel the negative effects.  Except that it’s impossible to know exactly if you’re on the lucky or unlucky side of life, and so maybe you say the unlucky number to get you out of an unlucky period but then you get your arm chopped off and then you realize that you were in the unlucky period before, so you say it again and then your leg falls off because you’ve just said the unlucky number too many times and fate is now pissed that you’re fucking with her.  This all makes sense in my head.

That’s why yesterday at my friend Laura’s house I was a bit of a nervous wreck entering the first day of this terribly named year.  And so we decided to change the name.  To “The Library.”  At first I thought this just made me feel immediately better because the booze had just kicked in, but now I’m perfectly sober and I’m in the second day in The Library and I feel so terribly comforted.

(by Johanna Ljungblom)

In The Library you are safe.  It smells of old books and worlds you’ve yet to explore.  It smells of worlds you’ve loved that beckon you back.  It smells of the bacon sandwich the guy in the corner has smuggled in while he devours words and food, not sure which is more filling.

In the library you are prepping.

Everything that happens in the library is just preparation for the next year.  That means if you fuck something up this year it’s fine.  This whole year is just practice.  The library is made for that.  Maybe you spend the year writing a book no one will ever read.  Maybe you spend the year recuperating from last year.  Maybe you burn the Thanksgiving turkey and forget an important birthday.  It’s okay.  It happened in The Library.  It was just practice for next year.  Maybe it’s insanity, or maybe it’s just me, but somehow I think we all need a year in The Library.  A year where it’s safe to make mistakes.  A year where it’s okay to have to escape and stare out the window without someone asking you when you’re going to get back to work and fix your life.  A year where we all whisper quietly about our plans and our wishes and dreams and darkest fears.  A year in The Library.  A year of getting lost in dusty, forgotten corners, and a year of finding the want.  (The want to leave.  The want to play.  The want to shrug off the dreams and walk out in the sunlight.  The want to pounce on 2014 with glee and rapture.)

The Library opened yesterday.  It closes 51.9 weeks from now.

Welcome.