Rae Rose

::I posted this on social media but I think it belongs here as well.::

When I am asked about the repercussions of having a baby from this particular body — if I am aware that I might be dooming my child to a life like mine, this is how I respond: First, this is the best time in history to have bipolar disorder. There are so many treatments available. Secondly, I find the phrase “your bipolar disorder” problematic. Yes, there is an aspect of bipolar that seems to be genetic, but it’s not an absolute. Telling disabled people they can’t have kids because their kids might be like them (as if that’s a bad thing) is a bit mean, ableist and eugenics-y. So, what would I do? Love her and tell her she will do amazing things on this earth and that there is beauty in her difference.

Today I took my daughter out into the garden. She loves smelling the mint. We saw a black tailed swallowtail lay an egg on our lemon tree. I immediately retrieved it and put it in a mason jar with one of my daughter’s dresses as a lid.

You guys are prolly on a yacht.

But the fact that I am a cat lady (okay, caterpillar lady) is not our only difference. The main difference between you and I? YOU get to act absolutely insane because you’re not. There are so many kind hearted and wonderful people in my life who love me – but DAYUM do they hold me accountable. I take my pills at 8 every night, I get exercise every day, I see all of my therapists and doctors, I never skip meals. Dude, because I have PMDD, everyone — everyone — knows when my period is.

I watch you. You can do what I can not – totally freak out – without consequences. (Okay sometimes there are some consequences. But in comparison? One time I didn’t get enough sleep so I drank some coffee — just coffee! — and was accused of being manic.)

The actually insane, the truly disabled, cannot act “crazy.” We have to fall in line. I live vicariously through you.

Real Housewives dump vodka down their throats, sleep with oh-my-goodness-everyone, (especially Harry) and get in yelling matches at fancy restaurants. I mean, Ramona threw a GLASS at someone and busted her lip. If I did that I would be taken to the nearest psych ward as fast as possible. They would discuss my medication intake, all my thoughts and how often I was peeing.

So, go my beautiful creatures. Scream and drink and cry and fight. I will be watching, smiling, checking on the caterpillars, raising a glass of water to salute you.

Elro was a moth and I was a host plant, which feels right on the money because my body is still not recovered from the pregnancy. I’m explaining this not to complain, but because I didn’t know you could have problems 6 months after you give birth — so if you’re in the same boat? You are not alone. She trick or treated with the big kids — which means my husband or brother carried her to the door and I’d say trick or treat for her. I can’t believe next year it will be so different!!!!

Four roses drinking from a blue vase.

The first one I name Moment of Gladness,

the second, Wresting Beauty from Fear.

All year I watched my beloved disappearing, the sweet fat

of her hips, her laughter, her will,

as though a whelk had drilled through her shell,

sucked out the flesh. Death woke me each morning

with its bird impersonation. But now she has cut

these Clouds of Glory and a honeyed musk sublimes

from their petals, veined fine as an infant’s eyelids,

and spiraling like any embryo—fish, snake or human.

And she has carried them to me, saturated

in the colors they have not swallowed,

the blush and gold, the razzle-dazzle red. Riven

from the dirt to cleave here briefly.

And now, as though to signify our fortune,

a tiny insect journeys across the kingdom

of one ivory petal and into the heart

of the blossom. O, Small Mercies sliced

from the root. I listen

as they sip the blue water.

–Ellen Bass

I just flew from San Diego to Boston, then from Boston back to San Diego, with a 5 month old, and lived to tell about it. Here are some tips:

1. Dress your baby up really cute. This way even if/when your baby cries, people will think, “Gah, that’s annoying…but that baby IS adorable.”

2. Bring earplugs for the people seated around you. Before we took off I told everyone that I had earplugs if they needed them. It was a way to break the ice and get them on my side. No one ended up needing them but it made me feel prepared.

3. Bring NEW toys your baby has never seen. I thought she’d want her toys from home — that something familiar would comfort her. She started getting fussy so I took out her turtle that she plays with every day. She threw it on the ground and reached for my husband’s beer. On the way back when she would start to get fussy, I’d bring out a toy she had never seen before and she was hooked. Totally freaking worked.

4. Play quiet games. She’s not into peak-a-boo but she did like when we’d put a new toy on a tray and bring her closer and farther to it. Reaching for it seemed half the fun for her.

5.When taking off or touching down, get your baby to chew or swallow to pop her eardrums. I timed her feeding with our flight’s time frame and it seemed to work. Once, though, she wasn’t remotely hungry, so I resorted to letting her chew on my hand because I’d rather do that then have her ears not pop and the ear ache that would follow.

6.Bring two diapers with you into the bathroom because ohhhhh my goodness, you might need it. Bring another pair of clothes just incase, too.

7.Bring wipes — not baby wipes —  that kill germs to clean the tray and areas your baby will be able to reach, because it gets very tiring trying to stop her from touching everything!

8. Relax. Everybody has been on a plane when a baby cries and we survived. If people are judging you? It’s only for the span of the trip and then they’ll get back to being annoyed at other things. This is a temporary issue so do your best and keep calm. The calmer I was the calmer she seemed to be.

Holy, holy

I was never looking for a personal g-d

not even in my poor and spiky childhood.

I was always looking for the experience

the knowledge, the sensation of holiness.

Something beyond my self.  Not lightning

or the whirlwind but powerful and still

at once.  I thought of strong light.

I thought of the burning bush, consuming

but never consumed. From time to time

usually but not always when writing

something would seize me, bear me

up and out of myself as in an eagle’s

talons.  I’d almost forget to breathe.

It was never for long. I’d return

shocked, my mind on fire, a rushing

in me, a coming together, clarity.

It happens less as I age.  Perhaps

I can’t bear too much of what burned

the trivial from me.  Maybe once more

before death into that high bright place.

I’m not a shaman or religious scholar

but from time to time something power-

ful, barely endurable, takes hold of me

by the nape and shakes me clear.

Copyright 2018 Marge Piercy

I was 5 months pregnant and agonizing over the decision to breast feed or bottlefeed. A poster on my doctor’s wall stated that if you breast fed your baby, she would be smarter than a bottlefed baby. I was scared that if I didn’t breast feed my baby she would inherit my mother’s asthma.

But! The chances of having a bipolar episode after having a baby were high. Trying to do the “right” thing and breast feed meant I couldn’t take a lot of different kinds of medication. I could become depressed or experience psychosis, and being in constant physical pain from my pelvic disorder made me want to bottlefeed so I could have moments with my baby while pain free.

Finally, it came down to my husband. I was about to be wheeled in for the c-section and he said he wanted me to be healthy so I could raise a healthy baby… and I’m so glad he encouraged me to bottle feed. It means I don’t get up at night so I have my life saving sleep, I am able to treat my pelvic pain and I was able to get a ct scan with dye. Once, maybe when my baby was 6 weeks old, I was at the doctor’s under the same sign. The nurse read off a monitor: “Are you currently taking lithium, seroquel, klonopin, prozac, lamictal and oxycodone?”

”Yes.”

”Are you breastfeeding?”

I blinked.

I’m grateful that my support team, especially my husband, was able to foresee that my sanity was worth saving during this new, stressful and beautiful time. Breast is great!!!! But it’s not always best.

I’m not capable of a lot of things, but if there is some sort of end of the world type situation and we have to all pile into the car and drive-drive-drive to some sort of safety? I nominate myself as driver. I don’t have to sleep. I will just turn on the engine and GO. By the time we get to wherever I’ll be totally flipping insane but I am capable going without sleep for days.

What have you heard about people on disability? They’re lazy, don’t want to work and feel entitled to get money from the state? Some people receiving disability actually believe that crap. I did.

Every time I got my check in the mail I felt horrible. Why? Why couldn’t I just get a job? My roommate was getting up everyday, going to work. Why couldn’t I?

Every disability is different, but the reason my body, with bipolar 1 disorder, is not able to cope with a 9 – 5 job is this equation:

Rae – sleep = madness.

You’d think all I’d have to do is take the medication that helps me sleep, and then:

Rae + Sleep = Like A Lawyer Or Some &#+@

I do take medication, every night at the same time, but just because I’m regular as hell about it? Does not mean my body will be. Sometimes I wake up, think it’s six A.M., look at my phone and it’s only two hours after I took my medication. Then the games begin. I wonder – what do I do? Take more seroquel? Klonopin? What will get me to sleep ::now:: and give me the ability to be awake in the morning to take care of my kid?

I could fill page after page with the sleep variations that rock my world, but try to take my word for it – the equation can never EVER be Rae + Sleep. Rae + (hopefully) Sleep is how I live. That determines how the next day goes for me.

I was living in San Francisco when I was diagnosed at 18 years old. I was working, trying to adjust to medication, not getting sleep and basically suffering for months. I started getting disability benefits at 19 and my life changed for the better. I no longer had to worry about how I was going to pay for my medication or doctor’s visits. All my energy went to living in a healthy way and getting my brain together. I started school, I started writing, I started exercising and learning how to care for myself. The problem was everyone asking me what I did for a living.

The answer, I guess, was, “THIS.” I need support, monetary and otherwise, to be able to be here and be present and live. I am disabled. I can not rely on my body to have a job at a store – and if I tried to get a job at a store part time with hours that really worked for me and my brain? I would have endangered my disability – and what flexible job could I get that would cover my hundreds of dollars in medication?

I am jealous of people who have typical brains and typical jobs. My husband has a fabulous job. I see how hard he works, and it’s not easy. But! His body can sleep! He can close his eyes and go to sleep. I’ve never been able to do that. If his sleep is disturbed he can take a nap. I can’t do that either. And even if he stops sleeping for a few days? He can soldier through until he catches up on sleep. Three days of bad sleep for Rae? Madness.

That’s why I don’t let three days go by without getting sleep. I’ve arranged my life differently than other people. I don’t go out at night for a late dinner or movie. I’ve done things in emergencies like rent an expensive hotel room I couldn’t really afford just to make sure I got a good night sleep because the people I was staying with on vacation were too noisy and keeping me up. (I sound like so much fun.)

When we decided to have a baby, the first thing I said was no, I have to be able to sleep. We decided my husband would take night duty. I go to bed early and wake up very early to take over so he can get a full night sleep and have time to get ready for work. (Those first weeks when she was waking up every two to three hours he had paternity leave.)

When I got married, I lost my disability benefits. My husband has insurance that pays for my medication and my visits with my psychiatrist – but it has been a struggle. I mean, my husband pays for my deodorant. That doesn’t feel great. Sure, I contribute to our life, but someday I would like to be able to find a job that I can do from home. A job I love and a job I’m proud of.

If you’re on disability, I hope you embrace it. If you hear so-and-so is on disability, I hope you’re cool about it and guys, for real, I’m ready — if it’s the end of the world kinda thing? I’ll drive.

::This is a poem written by one of my absolute favorite (strong, independent, wildly talented and unrelentingly lovely) women in the entire world. Lisa! Albright! Ratnavira! It’s called “I love women…” and this is the poem we need right now in this crazy ass world.::

I love women….

I love women who write letters in cursive

I love women who wash their aluminum foil

I love women who plant spoiled tomatoes and sprouting potatoes

who darn socks

and collect rocks

I love women who write lists

and make gift tags out of cards

I love women who use their soda can topper to hang art

and repurpose cereal boxes

mailing articles and comics to loved ones

I love women who keep gratitude journals, jars, trees

and plant flowers simply for the sake of beauty

I love women who gather herbs

make potpourri

I love women who visit and decorate their loved ones gravesites

who take pictures and attempt scrapbooks

Women who journal about their babies, their pregnancies, their college romances

I love women who save the letters their grandparents wrote

who insist you have seconds or have offended their ability to cook

I love women that hang their clothes out to dry

who sanctify their homes by cherishing all those who live within its walls

I love women who drink and swear and laugh all their makeup off

and yet still have a glimmer of lust at the young boy loading their groceries

Women who ask why certain designs were chosen when looking at a tattoo

I love women who savor beauty even when it has passed over them

I love women who feed birds

and read voraciously; having new ideas to discuss with younger generations

I love women who hold traditions and celebrations for their family

and plan their lives to include others

I love women who run cottage industries

trying to dance in both worlds, accepting neither will be newsworthy

I love women who cut their shampoo bottles to get the very last drop

Who save all their money and then splurge on a trip around the world

I love women who send birthday cards.

II

The way I love men who use their children’s baby jars to organize their screws

who paint their own fences

wash their own cars and change their own oil

and barbeque taking time to let the doggie have a small taste or any children near by

I love men who wake up early

I love men who whistle

and men with strong hands

Capable of bringing flowers, and changing diapers

I love men who cry when their trees are pruned too drastically

I love men who give nicknames

and dance and flirt when they’ve had one too many

I love men who lead a lady across the dance floor without a trace of regret

I love men who admit they’ve made mistakes

and have the capacity to laugh uproariously

I love men with dimpled chins and boyish charms

who still want to catch lizards and frogs and put them in their pockets

I love men who work all their lives to make sure their family doesn’t have to

I love men who tend fires

who fix things rather than throw them out and buy another

I love men who value a home cooked meal and a warm clean bed

falling in love with their wives all over again through their children and grandkids

I love men who talk to their animals

and the confidence in a man’s walk and the twinkle in his eye when he knows he is right

I love the agony with which a man gives away his daughter

and the triumph in the way he holds his first grandchild

I love the way men brush their fingers against a woman’s hair in appreciation.

III

The way I love partners that lean into one another

waiting patiently for a degree to be attained, a child to be adopted

making pancakes at midnight for a hungry lover

I love partners who take pride in their home together

loving their pets, showering them with tenderness

outlasting many of their traditional friends’ marriages with perseverance

partners who refuse to define love as monogamous, nor monotonous

seeing one another to the very end of this journey.

IV

The way I love people who take time to cherish this life

so fleeting so fragile and to leave kindness in its wake

who dig in for the next round

preparing to live a little longer than hoped for

And to leave something of substance behind.

~Lisa Albright Ratnavira