Monday, August 25, 2014

Megawhine

Well I can definitively say this is the sickest I have ever felt in my entire life. Whooping cough sucks. It's not just a small cough, nagging and persistent. It's doubled over whole body wracking coughs that last a minute and make you gasp and wheeze and lose oxygen while coughing. It's exhausting, after a particularly bad episode all I want to do is sweat and cry.

Early August we had the bat mitzvah and a lot of excitement. Being immune-weak, this left me open to pick up random bugs and say HEY! How's it going?

August 11, 13 and 15 I was at the doctor having skin allergy testing done to try to determine the cause of my rash which, surprise, is autoimmune. At least it's confirmed. The doctor said they can't do anything for it except steroid creams for my arms, hands and a different one for my face. Unfortunately with autoimmune things, there's not much to be done, she said.  Ah, the autoimmune song and dance. However, I feel at this point my body was so irritated (as the thing I AM allergic to? Is the adhesive) that I was even more open to random bugs.

First symptoms noted Sunday, August 10. Just a run of the mill cold? Plus a lot of sinus pressure in the face, unusual for me. Fever.

By Thursday, August 14 I went to the doctor. I was fairly sure this had to be a sinus infection - the fever increased and didn't go away, and whereas everyone else who had a mild cold as a result of Great Wolf Lodge got better, I got worse. So I figured best be looked at.  The doctor gave me an antibiotic to start Tuesday if I wasn't better - she said wait until I'd been sick 10 days.

Monday August 18 I had a job interview (which I subsequently got the job offer and accepted, yay!).  It lasted 1 hour. I sipped tea, sucked on ten cough drops and still had three bad coughing fits during the interview, and I landed it anyway. The strain of that made me actually collapse on the floor on August 18 and I wound up at the doctor. They said walking pneumonia. They gave me prednisone and albuterol in nebulizer form, as the albuterol rescue inhaler wasn't working as I couldn't take a deep breath anymore.

Wednesday August 20 I begged my doctor for some ativan so I could sleep. The prednisone had left me with 2 hours and 1 hour 15 minutes of sleep on the prior nights. The doctor gave it to me, and I was taking the antibiotic now on top of the inhaler. They also said I should start taking a codeine-based cough syrup, not more than 48 hours because then I'd become an addict. (yes, that's what the doctor said. I go to a practice with a lot of student doctors.)

Thursday August 21 I couldn't breathe, I just couldn't. I went to the doctor AGAIN and this time he put me on mega-albuterol every 2 hours instead of every 4. He put me on a nebulized steroid to add to the prednisone. He suspected pertussis. He changed my diagnosis to whooping cough to be confirmed the next day.The nebulized steroid was the key - my wheezing and gasping turned into just horrible coughing fits, for about 8 hours after taking it. It only leaves a 4 hour gap of unable to breathe twice a day.  He also extended my prednisone but luckily, I've adapted and get 4 hours of sleep a night now pretty routinely, without the ativan. I'm monitoring for any emotional instability and aside from drama-queen weepiness, I seem OK thus far.

Friday August 22 I got some x-rays and the doctor said yes, it's whooping cough. Sadly you're going to have this for a month or more.

I'm going to go in for a follow-up today. Basically my day looks like this.

1 AM - wake up. Cough until 3 AM. Fall back asleep for a couple of hours.
Between 5 AM and 7 AM - wake up. Cough hard enough to throw up routinely now. Wheeze, gasp, albuterol, prednisone with breakfast. Any physical activity in this stage will result in throwing up. Coughing fits every 2 - 5 minutes.
9 AM -  inhaled steroid and more albuterol. More albuterol at 11 AM as well.
9 AM - 1 PM - coughing fits only about every 10 minutes or so. This is WONDERFUL and I wish it would continue. Physical activity is tolerated during this stage, when defined as getting my own damn cup of tea and taking a bath as long as someone helps me out of it. I will eat lunch in here.
1 PM - exhaustion sinks in fully, but no naps come - thanks steroids.  Let's nebulize.
Between 3 PM and 5 PM the coughing gets harder and more insistent.  Nebulize twice more. By this time, I'll be wearing the nebulizer with just moist water in it to keep my lungs from barking.
5 PM - 6 PM - dinner. Which invariably makes things worse but thanks to steroids I'm starving so I eat anyway.
7 PM - 9 PM we watch the clock until steroid time again. Lots of coughing.
9 PM - steroid!
10 PM - lay in bed and start to try to sleep because steroid has controlled cough!
11 PM - sleep.

Fairly sure I've cracked a rib already. I've coughed so hard that I have also torn a hernia - I can poke my guts back in when they pop out and hurt. I've hit my head passing out at least twice. I have to wear certain control things because tiny girl bladder can't withstand the coughing at all. There's not even a point in pretending. And I have to do this for another month?!?  I am told it will hit a convalescent stage soon where I will be able to function more normally, with major coughing fits. Which is good because I start a new job on September 8. I'm debating reaching out to them and asking if I can start a week later just to make sure I'm okay.

So if you read my whine, thank you. I needed to get this off my chest into the twisting aether.  Also, if you suspect you have whooping cough - I'm very sorry. Ask your doctor about inhaled steroids.


Wednesday, August 20, 2014

Intent - a challenge

Charles Bukowski - You begin saving the world by saving one person at a time; all else is grandiose romanticism or politics.

Ghandi - Be the change that you wish to see in the world.

Jackson Katz - We need more men with the guts, with the courage, with the strength, with the moral integrity to break our complicit silence and challenge each other and stand with women and not against them.

Melinda Gates - Our desire to bring every good thing to our children is a force for good throughout the world. It's what propels societies forward.

Today I have a challenge for you. 

It's not the pay it forward challenge, though I respect that and I think that by seeing the impact of a single kind deed, it gives you momentum to continue making an impact with kindness in the world. 

It's not dumping a bucket of ice water over your head to raise money for ALS. 

It's not to complain about wasted water by people who are dumping buckets of ice water over their heads to raise money for ALS.

This might be a bit of a rambling post because my mind is a bit addled today, but I want to talk to you. 

I want you to spend a few minutes thinking about what you do that impacts other people. I'm not talking change on a grand scale - we look at current world events and it's easy to start feeling hopeless and lost and desperate and paralyzed. Ferguson reminds us that racism is still prevalent, still painful, and that inalienable human rights are being ignored. The fighting in Gaza and Israel is a painful, visceral reminder that the peace we so long for is out of reach so long as people are not able to meet on common ground, as long as they are all teaching their children hatred. Antisemitism in France and Europe as a whole is on the rise. School is starting again, and with it, plotted school shootings are being revealed and prevented - but we have to wonder what will not be prevented. ISIS is beheading anyone who does not follow their path. Suicide of beloved actors and beloved friends both have touched our collective hearts as well as our individual. I could go on, because the pain spreads like a fine mist and settles on our shoulders, weights us like a delicate shawl - noticeable, but yet not enough to prevent us from going about our lives. 

Other people notice it too. My challenge for you today is to think about what you do that impacts other people, good or bad. I want you to look at what you do and think about the agency you have there, how small adjustments can make a huge impact. 

Once you've thought about your impact, I want you to take one purposeful action to reach someone. Just one person - but do it with intent. 

For me, taking stock of what I do and then intentionally making a departure from my normal routine can make a huge impact on my day as well as someone else's. I'm having a difficult time right now, being sick, sickness making me have to take prednisone, prednisone making me a bit manic and sad all at once. It's uncomfortable. I'm working through it by acting with intention. If I say something rash, I'm going to apologize for it and own the fact that I said something rash, I was unfair in my speech. I'm going to call my grandmother, who I don't call often enough, and let her know I love her and am thinking about her. I'm going to reach out to a friend who I know is having a difficult time and let her know I love her and I am here to listen if she wants to talk. I'm going to share some silly cat videos with someone who I know could use a smile. But because I'm doing these things with intent, they mean more to me. They make me take stock of my situation and realize hey - pneumonia is temporary. Mania is temporary. All things are ephemeral and I want to make sure I'm being a net positive in the world.

I look at the quotes posted above and I think about them each. 

Bukowski is correct - you begin by saving one person at a time. That person is yourself, and she may need saving repeatedly. That can happen, that is okay. You cannot save other people, I'm a firm believer in everyone needs to save themselves. You can light the way. You can give resources and advice, you can counsel, you can laugh together, but ultimately - you are not responsible for saving anyone but yourself. 

Ghandi's quote is one of my favorites. To me, being the change means acting with intention and letting people see your example. I do not change who I am around my daughters. I cry with them, I laugh with them. I make fart jokes. I am myself with my daughters and I let them see when I struggle, and I let them see how I cope. I let them see how I am being the change I want to see in them - I want to see them develop emotional resilience. I want to see them be strong so they can be a light - and they are. They are a light onto the world, each in her own right. And I try to set an example for others by holding myself to a high standard of behavior. Do I mess up?  Oh hell yes. I also try to be the change by apologizing and finding middle ground. Am I always successful? Oh hell no. I wish!

What is interesting to me in the Jason Katz quote is the idea of being complicit through silence. My brother in law is about to go off to college. People have behaviors that bewilder him - and I say to him hey. It's okay to say not cool yo. If men are joking about women as though women were subhuman, it's absolutely okay to be the guy that says, "Dude. Knock it off." You don't have to be a part of it, and you don't have to sit in silence. This doesn't mean you have to cut off friendships or completely avoid people. Sometimes being that change, that example of how to treat people with dignity, will help them see that they really aren't being cool or cute or hi-larious. Don't be silent, speak up. Don't be complicit. We don't want to be complicit - it's a voice that we have and it's our right and responsibility to use it.

And our desire to bring every good thing to our children IS a deciding force in the world - it moves us. Melinda Gates is correct. Not just my children but all children - and it's a big and giant and scary thing to make that leap from the immediate sphere of influence out into the wild world of everything. But again, small, be the change. Be that example. When you fail, fail. And do fail, please do, make mistakes. Be grand and bold and when you rush headlong without stopping, you're going to fail sometimes and that's great. Failure is the mark of growth, and success can't happen without it. Successes are what bring good things to children, and children's children. 

If you can make life better today for someone by acting with intent, maybe your child, maybe someone else's child (aren't we all someone else's child?) then you're changing the world. You can take stock at the end of the day and go yeah. I did that. Go me. It'll make you want to do more of it. And more of it.  Every day. 

Intent-ful action is addictive, after all. 


Tuesday, August 19, 2014

What mania looks like

I had forgotten exactly how manic feels. I took 40 mg of prednisone today. I've got some walking pneumonia, damn cold, and it was horribly complicated by asthma making me cough so hard I was vomiting and unable to stop my head from splitting with pain. The great thing about prednisone is I'm breathing very comfortably right now. I am supposed to take 40 mg every day for the next five days and let my body just relax. I'm supposed to let my inflammation die down and let my lungs heal. I know it's important. The horrible thing about prednisone is that my mental state is not okay. It's not my own. And I'm going to blog it because I want to remember this - I want to remember the reality of how it feels to be manic.

(autocorrect would like to turn prednisone into prisoner. i believe this is accurate.)

Sometimes I romanticize it in my head. It's easier than remembering just how fucking painful it can be. It's easier remembering the good parts - for example, if you've ever wished you could add 6 hours to your day - there you go! Mania can do that for you.  Cheerfully you can sleep 2 hours and be awake 22. If you want to generate amazing, awesome amounts of writing, tirelessly, even about the rawest emotional topics - yep! Mania is your best friend. If you want a libido in overdrive? You got it partner!

Here's the awesome parts about mania.

1) LIMITLESS ENERGY!
2) Weight loss
3) LIMITLESS ENERGY!
4) Being able to talk at 350 words per second
5) Typing about 80% faster without a noticeable reduction in accuracy
6) LIMITLESS ENERGY!
7) Libido of endless energy
8) Lack of emotional stifling

Here's the shitty awful ugly truth about the rest of it.

1) My body will not sit still.
1.5) My brain will NOT stop talking. It will not stop presenting me with music and color and flash and bang and bad memories and great memories and they all bleed together like confetti on the street after a parade. After the piss and the rains.
2) I cannot sleep. And I know, because I'm only manic right now and it's been more than 3 years since I've experienced this, that this is a vicious fucking cycle. There is a very high likelihood that I will be even MORE manic tomorrow because I slept from 11:30 - 1:30 while tossing and turning and sweating and nightmarish dreaming.
3) What's that cat doing? I hear that cat. Also the fan makes a distinct click every 4.5 seconds when it hits the rotation part of its cycle and starts oscillating backwards.
4) Who invented oscillation? Did they know that it was going to make such a horrible clicking sound?
5) But if I turn off the fan I'm going to get way too hot. I get really hot. I'm hot.
6)  Fuck I'm out of Ativan. I've not needed it in over three years. I have one and a half mg. It's left over from a dental procedure. I saved it on the off chance I would need it. Okay. I'll take it.
7) Panic. Because I remember that I wanted to feed the guinea pig some fresh veggies before I went to bed and instead he only has pellets and hay and will he die? That would be my fault.
7) Panic is that someone's footsteps in the hall? But the girls are with their dad until Thursday. Nobody could be in the hall is that someone's footsteps in the hall and am I going to see a shadow? A shadow doesn't stop when you ask it to, do I have to see a shadow?
8) The best color I can describe is fuchsia. It's garish and bright in your face pink. It's relentless. It's ever-present. It fades in the wash but you won't notice it, you just won't even have to notice because in your mind it's going to be just as pink just as bright just as confrontational. It's bold, fuchsia. It's going to fucking get you noticed and you know it's going to get you noticed because you asked it to and you demanded it and you're in charge of this show. It's you, it's yours. It's bright pink baby.
9) Wait. PVCs. I hate PVCs. Is my heart going to just get tired of the pulsing, the throbbing too fast? Is it going to stop?
10) Should I maybe just re-read some books I've read before and wait calmly for this to pass?
11) Maybe I should cruise Amazon and buy a movie or two to calm my brain. No that's not going to work, I'd put a movie on and then I'd decide it's a really good idea to go for a walk. It's 2:30 in the morning. I'm not going for a walk at 2:30 in the morning.
11) If I can't go for a walk could I maybe clean the kitchen?  If I clean the kitchen I'm going to start coughing out my lungs and wake up Aaron and Tara and worry them. Maybe I'll plot cleaning the kitchen. Maybe I'll make some new recipes, write a few poems, and make a grocery list.
11) If I can't do that because I can't settle down maybe I should play the Sims and pretend everything is okay and watch my Sims sleep. Or eat. Or watch TV. Or swim in the ocean and sometimes get hit by lightning. Why do the Sims swim when they can die so easily from it?
11) The sun will come up soon I just know it only sunrise is four hours away. Will I be alone in the dark for four hours trying to quiet this quiet that stop the oscillation stop the overhead spinning?
12) Now I'm crying. I'm sobbing hysterically because I can't sleep.
13) Because I can't sleep I'm crying.
14) Because I'm crying I can't sleep.
15) That fan. That clicking. The clicking of my fingers on the keyboard. The darkness is surrounding me because my husband is asleep next to me and I can't bring myself to keep waking him and begging him to help me try to get to sleep.
16) My legs my legs they won't sit still.
16) The shaking in my hands it is a little less now? Maybe it's slowing. Maybe my wrists won't clack anymore when they shiver. Maybe I'm typing slower? I might be typing slower.
17) Oscillation is an amazing word.
18) Bagels are amazing too.
19) Cats are soft. Cats. George has curled up next to me and is purring with all his might. He knows I cannot sleep and he knows I need his reassurance and his company.
20) The veins in my fingers are becoming more visible as I get older. They're blushing blue through my skin, which is sunworn. I forget sunscreen. I think I might get skin cancer, but I think most people of my generation are going to anyway. Should I start putting sunscreen on my hands? And yet I love the lines on them - the wrinkledips at the knuckle are beautiful, especially reflected in the light of the computer screen in a dark room. I feel as though I may be made of bronze and bone.
21) I don't have to let myself feel this way.

And I don't. The last dose of Ativan I own has kicked in - it takes about 7 minutes from the time I take it. I will call the doctor in the morning and explain that prednisone is unkind. I will ask for Ativan to get through this time, because I know that I need to take the steroid and let my lungs recouperate. But mania hurts. That many thoughts at once, all at once, they hurt.

And there is Aaron next to me. He woke up and got the Ativan for me. He went back to sleep. He is beautifully unconcerned about long-term problems for me because he knows I've got this. I'm in control of my bipolar, at least for now - and the fact that I will ask for medicine when I need it is why I'll stay in control of it. It doesn't have to be my master - I can master it. Good sleep. Less stress. Ask for help when I need it. I don't believe for a moment that I would allow myself to spiral out of control. I would go back on the lithium in a heartbeat because my life is too awesome and too incredible to have to be feeling mania all the time.

I love to watch him sleep.  It's relaxing, you know?

Saturday, August 16, 2014

Milosz and generation

I've recently begun a volunteer gig as an Assistant Editor at a literary publisher. I read and vote on submissions, providing feedback to authors on their manuscripts if they're not accepted. It's been really fun and it's only been two days - I'm looking forward to many more experiences like this. At first, it made me feel like jeeze, why am I not writing more? I'm writing my blog, I've written two poems in the last week. This is not a huge creative surge for me, but then again, I'm sick. When I'm sick it's really hard to get my creativity going - it's like it gets sucked into a huge well of bad sleep and self pity and frustration and codeine to quiet the cough. But it's also really exciting me - I love to read the ways other writers play with words. I keep asking myself the following questions as I read, and explore what people are conveying within.

What do they value in their work? 

Do they value the sound of a line, the lovely interlacing play of language on the tongue, letting that provide both sound and context? 

Do they value narrative and the inherent storytelling? 

Do they seek to shock? 

Do they soothe or confront?

I've also been reading a  book compiled and edited by Czeslaw Milosz, A Book of Luminous Things, An International Anthology of Poetry. It's seriously delightful and has poems I'm familiar with mixed with many I had never read before. Each shines in its own right, and Milosz introduces each poem with a few thoughts that guide my thinking toward the artistry behind it and not just the poem itself. I often like to read a book like this many times, the first time without the commentary and then again through, relating commentary to poem. And then again just picking and choosing and lingering over my favorites. 

For example, I love Kenneth Rexroth.
(excerpt from Signature of All Things, Part 1)

                  The long hours go by
I think of those who have loved me,
Of all the mountains I have climbed, 
Of all the seas I have swum in.
The evil of the world sinks.
My own sin and trouble fall away
Like Christian's bundle, and I watch
My forty summers fall like falling
Leaves and falling water held
Eternally in summer air.

And I love W.S. Merwin.
(excerpt from Utterance)

the echo of everything that has ever
been spoken
still spinning in one syllable
between the earth and silence

Yesterday I wrote a poem intended to be grounded in the right now, in the moment. The moment I captured was a moment when hiking with Anna and Julia and Aaron two years ago, and I'm quite happy with the results. I'm going to be taking these Milosz poem introductions and trying to write a poem that I feel matches the introductions - sort of an homage to the explanation instead of the poem. That'll be my next writing exercise. I'm also taking a course from Luna Luna on Poetry as Memoir - perhaps these two things can go hand in hand.

Friday, August 15, 2014

Dreams

I have always been a vivid dreamer. I'm writing this in bed before I've even fully really woken up and got dressed and got coffee. I just want it to be a rambling more dream-state writing.

I believe this started when I was a very young child. I can't tell quite how old. I only recall that the kitchen table was round with a yellow formica sparkly top. I remember the wood floors, the crack in my door when I was in my crib which matched the floors and the blue rug spread in my bedroom. I remember looking out the front windows to see Lake Superior stretching as far as I could see, and snow. And siding on the house. And stones.

I had a dream then that God spoke to me. He would speak while I was outside in my yard, playing, and I would quake with fear and be rooted to the very spot I stood. I would quake and I would cry silently, wanting to scream or call out for help but the words would be a whisper and get lost in the wind and the magnitude of his voice. The words were always a warning. They were always the voice of my father.

I had this dream often enough that I remember at least ten instances of it, and it's my earliest memory.

I had a dream in elementary school that my best friend's father died when a tractor flipped over on him. It did, two weeks later. On a Wednesday. I even remember the shirt he was wearing in the dream, the shirt he was wearing when it happened. We stayed friends after that. A year later I had a dream her grandfather died in the same accident. Foolish child, I told her about it. When it happened, and he died in a freak repeat of the same accident, we were no longer friends. Everyone hated me - the children at school called me a witch. 

We moved not too long after that and I was glad of it. We moved all the way across the state. I saw her again when we took our SATs. That was awkward. She remembered. I did too, how could I not?

Another dream I had involved a cornfield. This dream was when I was in eighth, ninth, tenth grade. Thereabouts. It would recur from time to time after that up until I was about 24 years old. I was standing in a cornfield and asked to choose a path. The paths were laid before me, and one was life and one was death, one was green and lush and tall. The other was stalks, burned and yellow, grown too short in their lives and stumpy. In that cornfield was a pile of bodies. They were being piled with a pitchfork and the sound they made when they landed was like wet steak slapping onto the floor. Further down that path the bodies, too, were charred and stumpy and dead too soon. In my dream I was compelled, I had to choose that path, I had to go that way and I could not turn back. Sometimes I recognized the bodies.

I had a dream that gelatinous black bow ties would chase me up the ramps of a mall whose stores were all arranged on ramps. There was no stairs, and the spiral nature was of blue crystal floors, sparkly and too-bright. The black bow ties were shaped like farfalle pasta. They would eat through anything they touched and leave it screaming and dead. They chased me and I ran, and sometimes I would try to enter this store or another one, to escape. On top of the mall was an airport. If only I could run faster - if I could just get to a plane I'd take off and everything would be okay. But sometimes I tripped. Sometimes a man in a trenchcoat would show me his shriveled body and I would be too shocked to move and I would be eaten. Always when I got caught it hurt. Dying hurt.

Last night I dreamed a romance. It didn't star me - I'm not sure who the girl was that it starred. But it definitely starred Winona, MN. Especially the back alleys, and the apartment Renee and I shared. Neither of us were in it - it was, in fact, fairly modern day. But the girl was in love with the wrong man, and she was in the front seat with him and in the back seat was the man she really loved. The crisis came when the man in the front figured it out - maybe it was the way she let her hand travel to her true heart's desire's thigh. The man in the front seat stopped the car at the train tracks. He got out. She clawed at the car doors with her lover-to-be as the irate boyfriend turned into a train and stared down the car. The locks had turned to sand and could not be changed from their positions. They died wound about each other.

Dreams are strange things. Sometimes they feel too real, too bright. Sometimes they're in black and white. I've tried to teach myself tricks to tell me hey, this is a dream. You can change it if you want. You can fix it if you want. I've tried to teach myself that people don't see numbers in dreams - have you heard that? That numbers and letters are very difficult to read when you're dreaming because the language centers are recharging? I tried writing numbers on the back of my hand, when the dreams were very bad and very frequent. And then I'd know if I couldn't see them that I was dreaming. My brain is a tricksy creature though, because apparently I can see fine in my dream and I would read with stunning clarity.

Sometimes I type when I'm dreaming, and I text people very strange things. I talk in my sleep. Apparently if I was a ravioli, I would be named Chris. Thus I've told my husband recently anyway. I'm glad I'm not a ravioli. I don't really look like a Chris.

One time when I was dreaming I wrote something down in a different language. It turned out to be sanskrit.

Brains are really interesting things.


Thursday, August 14, 2014

Have you seen this movie?

Aaron and I were puttering around on the internet this morning over coffee. He is on his way to work soon, feeling better from his gall-bladder attack. I seem to have picked up a terrible cold when we were in the ER for his abdominal pain on Sunday, so I am immersing myself in the world of blankets and tea and coffee and cats and warm things and laundry avoidance and not going to work so I don't give this 102 fever to anyone but myself. And we were on the internet and looking at things together and I noticed that The Giver, which is a Lois Lowry book that I enjoy, has been turned into a movie and is either coming out soon or is out in the theaters this weekend or last weekend or some such. And I have a confession.

I don't like movies. Specifically, I don't like going to the movies.

In general, if you've turned a book into a movie, I don't care. I don't want to see it, I've read the book and I've created the visuals in my heads. I don't like plot contrivances that fit the story into two hours, typically. I don't like sitting through something and not interacting with it. I don't like being immersed in one thing for that long. I fall asleep, typically, in a movie theater because I cannot be occupied with just one thing for two hours without falling asleep. It's just not how my brain is wired.

I like some movies fine. I loved going to Harry Potter movies, mostly because they were experienced with my girls - in general, I like taking the girls to movies I know they're going to love, and I watch them instead of the movie for much of it, and it's awesome.

Television shows are fine. They're shorter - they're immersive, and most importantly, they have commercial breaks or can be paused. We watch Doctor Who as a family and invite friends over and turn off all the lights and curl up on the couch and get lost in the world of being time travelers. But we chat about it! During the commercial breaks, we chatter on. I can ask what people think's going to happen, we can relate things to what we experience. We can go make popcorn or get a drink and not miss anything. If my brain is wandering, I can quietly side-occupy it. I can crochet or I can play with clay or I can read a book while watching the show and still get just as much out of it, experience wise.

Do you have the same problem? Does your brain refuse to settle on one thing, and if you force it to, does it rebel like a spoiled child and throw up its fists and say no! No I don't WANNA watch a movie I want to look up every actor in the film to see if I've seen them in other things and try to remember why I know that face and also I would like to write a poem because that line was really cool and...

Or is it just me?

Tuesday, August 12, 2014

On coming to love past PTSD & Robin Williams

Love. 

Right, it seems like an easy word. It's an easy concept, a no-brainer. You love your spouse/partner. You love your family. You love your friends. You love that new greek yogurt with the honey in it. You love that purse with the little gold lock and key charm? So cute! You love baseball. You love Fridays!

Lao Tzu says "Being deeply loved by someone gives you strength, while loving someone deeply gives you courage." Love is a risk - it's reaching out in the darkness and hoping to find something you've lost, something you've always lost, and not things that bite and crawl. It's painful to love because when you love with your whole heart and your whole being, you're not reserving a core deep in you that is immune to pain. And so the exercise of practicing love in full form takes courage, and it builds courage. And when you are loved deeply, you are stronger and you feel more capable of facing tasks that require great strength of spirit, great courage.

So love begets love in this way. Being loved gives you the courage to love more. And when you love it's not a limited resource. My husband Aaron is my partner. He's my other half - literally. I'm creative and big ideas and flash and scattered and wow! He's follow-through and planning and diligent and thorough. When I am weak he is strong. When I am flying in the clouds he holds a ribbon I can follow back home. When he is down I am solid. We complement each other and we are polar opposites - ENFP and ISTJ. We are opposites in everything, even what drives us. But we need each other because we love each other, we don't love each other because we need each other. And because we have this love that begets courage and strength while taking courage and strength, we have more love to share. I believe he has taught me what the face of love looks like, and that I have helped him learn the same. 

I had to unlearn some bad things about love and it took me more than 20 years. When I was young, ten, one of my abusers told me that all they did to me was because he loved me. He told me under trees in my backyard, a lover's pair, that wound their top limbs around each other and bore tart cherries. I thought that was love then, and I hated it. I wanted no part of it. I knew my parents loved me and I loved them, but it was different somehow - I thought that what he said was truth - love makes you hurt people and make them dead inside. Why would I ever want to love anyone? The two years I spent being abused left me with PTSD, which I would eventually realize when I was about 30 years old. It goes hand-in-hand with the bipolar disorder, you see.

When I went into my first consensual relationship I was 18. I had met a boy, Christoph, while doing a summer job. We worked together and we went out after work one day and I thought hey, he's cute, this is fun, why not? So we dated for the summer and it was very much like being a wobbly-legged puppy. I wasn't sure what to do and I didn't even feel really like I could stand on my own two feet in any sense of the word.
 
In high school, I was not the girl that boys wanted to date. At the time I thought it was because I was fat and ugly and I wore big glasses and I was brilliant and they hated nerds. I don't think that was it - I think I lacked a critical confidence. I think I gave off a distinct "NO" vibe, and in retrospect, I'm very glad of it. I was really not ready for any sort of relationship.

The best thing about my relationship with Christoph was I felt like someone found me fascinating and beautiful for the first time in my life. I felt powerful. I had never felt powerful before. It's intoxicating. We broke up because we were going to different schools and we knew we'd want to date other people and it was entirely good-natured and really a good experience after all. In college, I recaptured that sense of power repeatedly. I would only be interested in a boy or a girl for a time, and once I realized I had power, I was done with it. That was my mindset - I didn't want anything that made me feel like I was not the one in absolute control of everything. But when I was in absolute control, I would be bored. Sometimes I would weep for no reason. Sometimes sex would make me sob.

Then I met my ex-husband in person and I didn't feel in control. I felt cared for and kept safe. My abusers, I knew they would be able to find me. In my head, that was always part of my drive to get away. And so I moved halfway across the country to keep me safe, and I knew Jay would take care of me and pet me and love me, and I was so in love with that idea. I wanted to be safe. And for a time, i was very happy being safe but as I started to grow up and have more and more experiences with life, I realized that safe and secure does not always equal the happy and fulfilled path. We had two children together and I love my daughters.

I think my love for Anna was my first ever experience with what love really is and really should be. It was terrifying in its intensity. It had a complete lack of selfishness in it. Love for me, before, had always been ultimately about me. I was very dramatic and if people loved me and I them, it was sort of part of my story. I love stories, and I've told you I'm a storyteller. Love makes for a good story, right? Dramatic things, clashes between desires, all excellent plot material and good experiences. But here was Anna, this small baby, and she had delicate long fingers - which she uses now to play the violin and to write and to craft her own stories. She had my eyes. She had such soft, thin skin. I felt love like I didn't even know it existed at that point. And it was terrifying - wasn't love, hadn't I learned, that love meant you hurt people?

But that couldn't be and I knew it wasn't true. Then Julia came and the love I felt for her was the same intensity, the same type of not-selfish drive to love and protect. She was so tiny, born so early, and she knew nothing of anything except those close to her, mother, father, sister. As babies my daughters both exhibited bits of their personalities they retain to this day - Anna never wanted to be swaddled. She wanted to experience the world with her hands and eyes and legs and moving and not contained. She is very much the independent child. Julia loved swaddling, wanted to live in my sling and be held constantly, and she still delights in curling up in a lap and snuggling and loving the world from a position of comfort.

So I experienced love for the first time with those two girls and then my life changed. I started loving things. I loved myself, and that was difficult. For a long time, I had regarded myself as a stumbling block to being a perfect fairy tale. I wanted myself to be different - I would try to will myself to fit the role I had defined for myself. I willed myself to fit a stay at home mother. I willed myself to fit a wife. I willed myself to fit a glamorous sophisticated actress. I willed myself to have others perceive me as kind and loving (but I was so afraid to love!) I willed myself to fit a business-woman. And in truth, I am a mother, I am a wife, I am dramatic - but the thing was that I had defined ideas of what things WERE and I made myself fit them. I gave that up as time went on. I willed myself to fit a poet's dress and took my MFA, but eventually, after therapy and diagnosis and everything after, I stopped willing myself to fit anything.

It was time to stop willing and to figure out who I am. I had to find myself in all that- and all of that was part of PTSD. What shook out was me, and sometimes little bits I didn't know continue to shake out. I love my friends without reserve, and I love my husband without reserve, and I love the people I work with and the clients we serve. I've started to make love my mainstay, and to approach people with love and an open mind and an open heart. It's really hard! Sometimes it hurts and feels very stabby, but I have to do it. It's who I am. 

Love isn't something you are forced into with tart cherries in your mouth instead of sweet summer plums. Love is hard to learn but easy to practice. It leaves you open and wound-able but more complete and more full. I wouldn't go back to being any of the people I was in my past - but I wish I could have taught myself love at a younger age. I'm thankful for my children and my patient friends and husband, because I'm a practitioner of love and sometimes I make mistakes. But that's all for the better. Love is what you reach into the darkness hoping to find, and love is what enables you to reach through the darkness. Love doesn't let you "fix broken people" - but it lets you hold their hand and walk next to them while you can, and let them know you are there. You are present. They are loved.

Sometimes it's not enough. Robin Williams will be missed - the roles he played and the laughter and tears and joy he brought. I guess this rambling bit about how I learned to love is how I'm relating to the death of Robin Williams. I've read people saying he must not have had enough people helping him, and where was his wife, and what could have happened? But see - that darkness that we reach into to find love - for some people experiencing depression, that darkness is everywhere and permeates everything. Every reach is a reach into darkness and eventually there's no energy to reach more.

Which is why it's important to walk with people, to hold their hand while you can, and let them know they are loved. You may not be able to save them. Ultimately, it's not up to you to save other people. It's up to you to love without reservation and to understand. 

If we take from the tragic death of Robin Williams the message that we should love people openly and that it's OKAY to talk about mental illness and it's OKAY to have a mental illness and that in talking with each other, there is strength and there will be more hands to hold and help you make it through that darkness for the light that really is waiting on the other side, then we are paying honor to the legacy of a man who made three generations laugh and cry and feel and cope. 

And we loved him.

Saturday, August 9, 2014

What buckets do you have?

Sometimes I feel a bit like a firefighter in an old-fashioned bucket brigade. I wind up spilling things from one bucket into another bucket into the next bucket until I am able to put out the fire. But sometimes, what's contained in the buckets is not compatible with what's in the next bucket, and I wind up making the fire bigger and not smaller, making more frustration for everyone.

I'm sure you do the same. You have buckets for work, for home, for school, for activities, etc. Here is a list of my typical buckets and what's in them.

Home Bucket: This bucket contains water, that which sustains me always. It's got my children, my husband, our cats, my home with all its glorious comfort and messes and some clutter and some serene space. I try to de-clutter it and keep it open and free as much as possible, but then I have nooks and crannies stuffed with books and old photos. I am not a materialistic person - I don't value expensive shoes, purses, jewelry. When I am not at work, I'm generally in yoga pants and a comfortable shirt. I have fibromyalgia and cloth often aggravates my skin so I'm all about comfort, baby. Slippers and soft cotton and many different pillows in various shapes and sizes so I can write and read and play games wherever I need to in order to be comfortable that day. Soft cats to cuddle and children whose company I truly enjoy, even on rough days. I love having friends I bring into my home. The home bucket is my place of safety and joy.

Work Bucket: This bucket contains sand. Sometimes this is not the right thing to mix with water, as it will just sink to the bottom without proper handling and then you have a mess that's hard to pour out. As I'm sure you can imagine, my line of work is sometimes frustrating and often fulfilling. Sometimes I get bogged down in things that happen at work, and I have a hard time letting go of them when I get home. I try to separate work from home as much as I can - when you work in an industry that has such a far-reaching and personal impact, you need to compartmentalize to keep your sanity. I spend time at work thinking about how to help people, how to tweak my performance so that I am helping my clients be their best selves and achieve the self-sufficiency that they want and that I know is within their reach. I look at my metrics, my successes, my failures, and I try to dissect what was a success and what didn't work - why did good or bad happen? Is this repeatable? It's hard because every client is different, and every barrier to housing and stability is different, but there ARE things that can be repeated to make a better case. It just requires a fluid approach and a knowledge of the population served. But it can be very emotionally draining, and stick to my bones, like wet sand. This bucket is limited in size but always full. My work friends displace some of the sand with fluffy air, making it a lot less likely to get clumpy.

Arts Bucket: I love art. I love drawing, I love singing, I love writing, I love helping my kids understand art and want to pour their souls and hearts into art as well. Art is my life-blood, but it has to not be allowed to consume me. I cannot spend all night writing. I can't still be writing at 3 AM - that's a big no-no. So this bucket is filled with oil and it cannot be thrown at the flames. It shimmers and shines and settles on my skin, making it repellent against clinging sand. It, too, must be limited in size - if only because I want to make sure the Home Bucket gets enough attention and the Work Bucket does not suffer.

Bipolar Bucket: This bucket is filled will swill and shit and all things that are, in and of themselves, useful but do not work well with anything else. I do not say my bipolar is useful - but having boundless energy can be useful. Manic joy can be useful. Calm sadness can be useful, as a break. All these things feed into the arts bucket - often when I write it is because I need to write out the bad. Well, it used to be. Lately it's more about art and less about shoveling excess shit from this bucket. This bucket is never full. It's a big bucket, but there's just a fine layer in the bottom that I don't let get past the, oh, 1/4 mark. It's been years since this bucket has been any problem whatsoever, but this bucket exists and I must see it, and I must know it's there, so that I can make sure it's not silently filling behind me where I am not paying attention. Shit and swill aren't a problem as long as you don't let them build up.

Pain Bucket: With fibromyalgia, there's considerable pain. It's a hard thing to understand if you don't suffer from pain on a regular basis. I don't take pain medicine typically - I have a migraine medicine I will take sometimes, I will take a muscle relaxer if my muscles are spasming and won't let go. In general, I manage my fibromyalgia by keeping moving, using heat, using a massager (I use a Hitachi wand to release the strain in muscles that will absolutely not let me rest) and by asking my husband to apply pressure to places I know need pressure. Also, I de-stress. The more stress I have, the smaller the pain bucket gets. It's changeable in size, see. When I have very low stress levels and I keep active, the bucket's really big. And therefore the pain, which is something like molten lead in the bucket, doesn't fill it and I can just keep that on the back-burner. But if I get stressed and I don't take self-care measures to relax and be happy, the bucket shrinks and the pain metal, which is pretty much constant, fills the bucket and I absolutely can't take it. Therefore the key to managing it is not medication, it's stress management and relaxation. I'm always going to have pain. The key is how I deal with that.

It helps me to understand my life when I look at my compartmentalization. For my line of work, keeping things in different compartments is crucial. I can't let work stress me in life or the pain bucket shrinks and fills. I can't let arts consume me or the bipolar bucket starts to get too full. I can't forget to use the arts bucket or all other buckets fail. It's a big resource management game, using all my buckets in the right way, but it's how I keep my life happy and healthy. I look at it that fibromyalgia doesn't have to keep me down, and bipolar doesn't have to make me feel less whole. I'm whole and I'm happy - even when things suck, I just pay more attention to the buckets that DON'T suck and move things about between buckets until I re-balance my life the way it needs to be for it to be the very most awesome.

Thursday, August 7, 2014

Anna's Bat Mitzvah Speech

August 2nd, 2014

I have to confess that when I stood here for the Torah Service, in front of you all, I was terrified. What if I had messed up? What if I spoke a word wrong? And - God forbid - what if I had dropped the Torah? Coincidentally - my Torah portion is about fear, believing in yourself, and the voice of God. In this portion, Moses is talking to the new generation of Israelites, preparing them to go into Canaan (Israel).  He says to them (speaking as God), "See, I place the land at your disposal. Go take possession of the land that the Lord swore to your fathers." But the Israelites were too afraid because of the terrifying reports that the scouts have brought back. All but two were not permitted into Canaan. The rest had to wander the desert for 40 years. Only two of the Israelites, Joseph and Caleb, the two scouts who tried to encourage the rest to go into the land.

The message I took from this was believe in yourself

I’ve always thought that education helps you to believe in yourself. Without it, you never know what tomorrow might bring. What your life might be like. You are almost constantly scared that something bad will happen to you. Thus began my project. I knew what I wanted to do. I wanted to spread the gift of education to those who do not have the advantages that I have.

The first part of my project was helping the son of a friend of our family, Jared, who has hydrocephalus, which means he is missing half his brain. He had no therapy toys at home, which meant he had nothing to do that would help him develop. That keeps him from finding his true self.  Having no money for toys keeps his mother from helping him, making her afraid. By hosting bake sales at the temple to buy him toys, we help both be more true to themselves. We helped them believe in themselves. 

 The second part of this was reading to the young children and collecting books to donate to Katherine Hanley Family Shelter, where my mom works. People suffering from homelessness are scared.  They are too afraid to listen to the voice of God or of anyone, instead they are focused on survival. By collecting educational books for children at the shelter and taking time twice a week for months to read to the younger children, we help the children feel safe and excited about learning, which will help them find their true selves, and we help the parents feel less afraid because we are taking care of their children while they look for housing or new jobs that will give the family stability. This helps entire families believe in themselves that much more.  

One of my biggest role models for the importance of education to all people is Malala Yousafzai. Malala defied the Taliban by standing up for female education rights. Because she defied the Taliban, they threatened her assassination, and actually attempted it. She was shot in the head while riding home on the bus from school, and she survived it. She made a miraculous recovery from a usually fatal bullet wound. At 16, she is the youngest person ever to receive a nomination for the Nobel Peace Prize, and she continues to stand up for what she believes in the right of all people (especially women) to receive an education.  

Like Malala, education helps me feel so much more true to myself. I really think that middle school is about who to listen to, and to find who you really are. This year, I discovered civics in a big way. Because I have always had an interest in civics, I joined this group called We The People, which is a civics competition group. I learned a lot about government and the Constitution. But most of all, I discovered just how much of a civics nerd I am. I also rediscovered writing in a big way. I was in Creative Writing in the first semester, and I absolutely loved it. A lot of people thought it was boring, and they didn’t like the teacher, but I loved everything about it. It helped me learn how much I loved writing. And unless I miss my guess, I’m pretty dang good at it. My school life and education really helped me to find who I was this year. Or maybe I haven’t completely found it, but I think I have a pretty good start.

So now I know the Torah says I need to be brave and listen to what is true in myself. I need to help people not be afraid, to be themselves, I need to take that leap of faith. And you know what? I have. I hope that by being called to the Torah as a bat mitzvah and being able to share what I have learned about bravery and education with you, that we can all take steps to be our true selves together and we can all listen to what God wants of us and what we want of ourselves. I don’t want to miss the opportunity to listen to God and I know that the future is going to be scary, but at the same time, pretty awesome. 

Before I finish, there are some people I have to thank. First of all, I want to thank my parents. I am so grateful for them every day. They were a huge help in preparing for this day, without them, I would have been consumed into a little puddle of anxiety. Second, I want to thank all the clergy for helping me take this huge leap in Judaism. Third, I want to thank my tutor, Ms. Heller, for being such an amazing tutor and helping me through all my tough times with the Hebrew. I couldn’t have done this without her. Fourth, I want to thank all of my friends and family for being here today. For my family, you put up with a lot, being related to me. I know I complained about this a lot and can be a huge pain, so you have no idea how much it means to me that you’re here. The same goes to my friends. Fifth, I want to thank the Nerdfighters for really opening my eyes for things that are wrong in the world, and how a small action can have a great effect. Lastly (but most definitely not least), I want to congratulate Jacob on becoming a bar mitzvah and for doing such a great job today.  

Thank you, and remember - don’t forget to be awesome!

On Bat Mitzvahs

This past weekend was my daughter's bat mitzvah. It was a beautiful ceremony, a celebration of life and growing up and gaining responsibility and of the young woman she has become. She's compassionate and caring, she's intelligent, she's stubborn, she lacks patience, she's friendly and unsure of herself. She starts new things. She gets frustrated sometimes and stops new things. She has all the brains and is learning,  bit by  bit, wisdom to go with it. It made me think about how the process of becoming a bat mitzvah impacts children.

The process of becoming a bat mitzvah really begins when a child is very young. They learn to read Hebrew. They learn marks that teach them how to chant, different tropes. They learn how to do a project that serves others and not themselves. They have to study, they have to reflect and really think about what it means to take on religious responsibility for themselves. Judaism is not a one-size-fits-all religion. It does not seek to convert people, it does not proselytize. It expects a lot out of you, and it does not begrudge you your right to believe in God or not. In point of fact, it's about healing a broken world and leaving it a better place. When we speak of the world to come, we are not talking about heaven or hell, eternal fire and brimstone. We're talking about the legacy we leave our children and their children - are we making a positive change in the world? And so a girl who is becoming a bat mitzvah starts by asking herself these questions. She chooses a project that helps people and then thinks about how that relates to everything she has been learning and has been taught. She questions the Torah and she questions herself. In short, the process of becoming a bat mitzvah encourages a lot of independent thinking and taking responsibility. The bat mitzvah is rewarded by leading the service, truly taking her place as an adult in the community, and by being surrounded by people who love her and praise her for the good she does in the world and the hard work she put in to this transformation.

I truly believe this is an amazing transformative process. Anna, my lovely daughter, did her absolute best and shined brilliantly. She is strong. It was hard! It's not easy, learning all these things and taking that kind of responsibility. And she did great.

Here are the benefits I see from the process.

  • A growing sense of personal responsibility.
  • Self-pride for conquering a difficult task.
  • Praise and accolades for something you worked at and not something you inherently ARE.
  • Instead of giving credit to a deity, the child takes credit for herself. She did this.
  • Gratitude for others in her life.
  • Life celebration - even if difficult things happened even the week before, she DID THIS. It was huge.

This was not my experience as a child and I am so extremely glad that my children are being offered the chance to have their coming of age ceremonies be a thing of beauty, family, and love. I hope and pray that it gives them the feeling through their whole lives that they are loved, that if they work for something, they will succeed at it, and that following through even when things are difficult is always going to be worth the payoff. I believe Anna is off to a wonderful start, and I look forward every day to the things she teaches me, and the things I learn about myself from the experience of sharing her life with her.

Julia - well, we do get a 2.5 year break in between. December 17, 2016 is a long way away!



Friday, August 1, 2014

Cats are jerks in the morning

Morning came really early in our house this morning. We have five cats. This does not make us crazy cat ladies (CCL), because the crazy cat ratio equation is:

CCL > n+1 cats, where n = the number of adults in the household.

We have four adults in the household and five cats, therefore we are not greater than the equation and we just barely slide in under the radar. This morning, however, I felt like a CCL. I wake up every morning because tiny girl bladder says I must go sometime between 3 and 4. So I woke up at 4. I heard something fall downstairs. Then George came upstairs and knocked over a glass in the bathroom. Then he got in bed to cuddle. Then he vomited everywhere over the side of the bed, having eaten like a piggy apparently. Then we realized that he had knocked over two glasses downstairs and the dining room floor was soaked. Then Peekaboo started randomly burying things, as though they were dirty, all over the bedroom carpet.

Then we decided you know what? Sleep just ain't happening. So Aaron and I are up now. We got out of bed and started the coffee at 4:45 this morning. It's going to be a very long day - Anna's bat mitzvah is tomorrow morning and we're very excited, but that means that we're down on some sleep on an important day. The good news is we will be able to sleep better tonight because of it, one would hope.

I decided this post would be a good opportunity to introduce my cats, as they may feature in my future writing.

The cats of characters:

George - 3 years old orange Maine Coon mix cat. We got him when he was a wee baby - we saw him and his brother, Fred, at 6 weeks old and fell in love. He grew up in my bra, and became extremely clingy after his brother died a young death. Because he grew up essentially napping in my cleavage, he is the friendliest, lovingest cat you can imagine. He thinks he is a human child. He sleeps in our arms, he is alert, he greets guests politely. He's not the smartest of cats, and he is so large that he forgets to get his whole body in the litter box and winds up going right in front of it, thinking that if his front paws are in, he must be good, right? Still, he is our baby and we love him. He is a giant beastie.

Lucas - 3 years old, 2 months older than George. After Fred died, we knew we wanted a companion for George so we found Lucas. A man had seen a kitten. The family had been feeding him, a kitten under their porch, white bread. Just white bread. So the man took him in, gave him real food, and posted on Craigslist looking for a family to adopt him. We took him, and he's a very regal and good cat. He loves Aaron especially. He's black and white and silky and fat. I imagine because food was scarce in his developmental years, he has very little restraint now. He's highly intelligent, and he's highly demanding. He likes nothing more than to go outside and stretch on a warm sidewalk, nibble some grass, and come back inside. He's the most cat-like of our cats.

Shooey and Peekaboo - Shooey and Peekaboo are 8 year old black male siblings. A friend of mine at work, two jobs ago, had gotten remarried and her stepson, it turned out, was violently allergic to cats. She had raised Shooey and Peekaboo from babies, but it's really hard to rehome black animals. Black dogs, black cats - nobody wants them. I said I would foster them and then try to rehome them, but we wound up loving them and keeping them. Both are lightly neurotic in their own delightful ways. Shooey likes to claim multiple chairs at once by keeping one paw on any chair near him that his body can't touch. He is the least likely cat to spill water. He is not the bottom cat in the house. Peekaboo is the bottom cat in the house. Sometimes he takes his food out of the bowl and eats it off the floor. He loves to cuddle in bed, but will move when George comes to bed for the night. The problem is that he doesn't know how to cuddle, he gets so happy that he walks away while being cuddled, and he detests eye contact. He will slide up to you and put his head on your shoulder and rub chins with you though, and is extremely affectionate and loving. Both black cats have extremely loud purr-boxes.

Regan - Miss Regan is Tara's cat, the only girl cat in the household, and she does not like men. She is a stately old maiden, affectionate and warm with people she knows well and a lump under the bedsheets when anyone she doesn't know is even in the house. She's the most fearful cat I've ever seen - but in her home element is happy and has George as her fluffy boytoy who just wants to play with her. I think she's got the good end of the stick, with four boys to boss around.