Rae Rose

“that destroys souls!” — Carlo, My Man Godfrey

Disability turns you away the first time. You have to document how, in my case, crazy I was, how unfit I was to be working. I got interviews from my friends, family and roommates. I read them. They all talked about me like I couldn’t do anything — which was true. Brushing my teeth was a win. I couldn’t afford my medication. I was a financial drain. I remember reading about me from my roommate’s point of view… I had no idea but every time we went grocery shopping I had an anxiety attack. I wasn’t even aware of it, but there it was in black and white. Disability turned me down — we hired lawyers and I won my case.

The awesome thing? I was able to heal. I didn’t have to worry about the cost of medication anymore, I could take it every day without worrying. I went to school. I took care of myself. I started to reset. To learn all the lessons you’re supposed to at that age. Without that support system I know I wouldn’t be where I am today.

I’m not on disability — my husband makes enough money that I no longer qualify for it. I’m still disabled. Somehow my OCD locked on to the thought that I had to make a certain amount of money a month. I couldn’t stop thinking about it. I had so many alerts on my phone for jobs from home. (Most of them are scams, unfortunately.) I stopped cooking, I stopped doing laundry, I just sat collecting jobs and job leads. I went to bed reading about it, I woke up and read my newest job alerts. It was sick. I didn’t know how sick until my husband came home with the baby. They had gone to get her shots. She didn’t get her shots. My husband’s face was frozen.

She had fallen off a four foot table. The doctor said he could take her to the ER or watch her. A doctor or a nurse called me every hour — asking different awful questions like, “Is there anything seeping out of her ear?” We were told to take her in if she stopped moving any of her limbs, if she stopped smiling at us, reacting to us. We were told to wake her up in the night to make sure she could still wake up.

I said all the right, comforting things to my husband. I did all the things the doctor said to do. But, I knew I was empty. I knew I had to scale back on the job crap and get back to basics. Get the house in order. Find some peace within myself. Stop hunting jobs and thinking that I’m nothing, I’m nobody, I’m no good without earning as much as my husband does.

Elro is fine. And I’m doing better. I’m trying to focus on love, home, and family. I’ve spent a lot of time decorating for the holiday season.

The reason I share this story is that making money and having a disability — it’s problematic for a lot of disabled folks for a lot of reasons. Making money is complicated in our world. But! It shouldn’t be the center of your life, the center of your story — or ANYTHING to do with your WORTH.

You are worthy. As is.

I dared myself to embrace what gives me the ability to be a mother, a writer, a wife.

To SPELL OUT exactly what my body needs.

It made all the right people uncomfortable —

“You’re going to wear THAT In a holiday photo?”

YEP.

It made all the right people, the people in my life who have a chronic illness, say —

“Hell yes! Where do I get one?”

There is no shame in taking lithium! LITHIUM is not a bad word — it’s a freaking miracle! YES I’m going to wear this during the holidays because without them I’d be locked up! No tinsel, no tree.

I’m proud of myself for my consistency and follow through, proud of the (long af) journey to get diagnosed and proud to be exactly who I am.

You see me, every day, doing what I do — well this is how I do it.

These are the words I’ve been told to be ashamed of — but SCREW THAT.

That changes now. Get to really know me. Meet my meds.

If you want to feel how EMPOWERING it feels to proudly wear your meds across your chest?

I’ve teamed up with @spooniesistershop to create these awesome shirts to raise awareness of chronic illness, and break down stigmas about the medications that help us live our best lives. They are SUPER soft & comfy, and are completely personalized with your own meds that help you do what you do.

Use coupon code “POETRAEROSE” for 10% off your own “Meet My Meds” shirt RIGHT HERE.

After my 6 hour brain surgery to remove a cavernoma in my midbrain, I woke up and remembered what the doctor had said — that I could lose some faculties from the surgery.

I tried to lift my leg. It didn’t work. I tried to move the other. I could lift it about an inch. Something was wrong with my eyes, too. What scared me the most was that I had trouble moving my right arm.

She was my age. I told her I didn’t want to try to write yet, because it would devastate me if I couldn’t. All those journals I used during my bouts with bipolar disorder saved me. She was nice about it and left me alone.

The next therapist came in sometime later. She did not seem to care – she wanted to know – could I write or not? She put paper on a tray and held out a pencil. It took forever to reach for it. When my hand got there, it wouldn’t open. My fist looked like a rose — a frozen rose or a rose made out of stone. I didn’t even know I was crying. I was trying to open the hand that had saved me again and again when I had nothing else. Finally the therapist had enough. She pried my hand open, closed my fingers around the pencil and asked me to write my name. With every effort I had I tried to write an ‘R.” I only made a tiny indentation on the paper. Nothing I did would make a bigger mark and it certainly didn’t look like a letter. Covered in tears now, I looked at the woman and told her to get out.

“I told you I wasn’t ready.”

I heard myself scream. “Leave.”

She did, but she forgot that pencil. I called the nurse and told him to take it out of my hand it out of the room.

It took awhile to stop crying alone in that room. Sometimes I think about that day, that hour, that moment. Sometimes it still feels like it takes something out of me.

This is what I normally look like. Happy and enjoying my daughter and the day. So I was wildly upset with myself this morning. Sitting with my daughter in her play pen I tried not to cry. I could barely move. I couldn’t get up to change what was on the tv even though it was upsetting me. Everything felt completely out of control.

The truth is, I’m not perfect. I had “forgotten” — more like put off — getting my morning meds. Today was the third day I missed them. I’ve been busy working and being a mom…. I figured I could skip a few days.

But I can’t. Without the morning meds for just three days I could barely make my daughter her bottle and her screams hurt. They physically hurt me. They were too much. It was scary, feeling this way.

My husband picked up my meds and I promised myself and my daughter that I wouldn’t do this again. My health would come before everything — the holidays, work — because I can’t do anything without the medication.

Lesson learned.

If you’re bipolar and want to be part of my January class/group on how to thrive with bipolar disorder, please email me the biggest thing you struggle with raeroselarkbloom@gmail.com or leave it in the comments! We can support each other. ❤️

Six month Elro finds one thing absolutely hilarious: a sneeze. If the dog sneezes she laughs uproariously. She isn’t interested in books, so I made her a little rhyming book in which an elephant invites a lot of animals over for dinner. They all arrive on time and under the weather. When I read it to her she giggled. Success! Her first audible enjoyment from a book. If you have a little one and you share an inside joke, make a little book for them about it. I had too much going on to illustrate it for her, so I cut the  shapes of the animals out of colorful paper stock. I’m going to bring it to Thanksgiving to remind her that there is onnnnne book she does like. And then maybe she’ll fall in love with all the books! Orrrrrr totally rebel. 😳

Someone posted a picture of them huddled together in an office building during a wild fire. My first thought was – “That’s what I need my brain to do! More of that!”
I need the sweet, creative parts and the mean, destructive parts to get along. To huddle.
To realize that there are other things outside of my head that need attention.

Work, family, friends – I can’t be fighting with myself. I have to let all of the pieces that make me up, no matter their personalities, calm down. Chill. Huddle. Because what’s going on right outside? My 6 month old daughter is humming to herself as she chews on a fabric star, my own mother going in to another doctor office to try to find out what’s wrong, my husband is sick in bed. There are so many things to do, to say. I can’t be caught up in the drama of my own brain. Everything needs to chill out a little, take notice of what my reality calls for and huddle together in an unlikely alliance.

Childproofing my house scares me. I go to bed thinking of bobbins rolling under a couch or a pin falling from some almost-finished doll. I told my husband I thought I would stop making things for awhile — until she was old enough not to swallow a bobbin. He said absolutely not and reminded me that lots of mothers who sew have figured out how to store their tools. Of course he was right. Of course it was my anxiety disorder that made everything look so black and white and unreliably creepy:  bobbins = death.

After using this tutorial to make a bonnet out of Flora’s (my brother’s grandmother) robe — which I’ll also be making a tie out of for my brother — I felt happier than I have felt in weeks. Creating things is important. Wherever you find that happy, peaceful, almost meditative feeling? Whether it be working in the garden, cooking, sewing, crafting, writing — anything where you make something out of something else? Do it. Stop putting it off. Fill your life with those moments!

It’s important for your physical and mental health. (Which, by the way, is the same thing.)

My friend Laura Gail Grohe posted this quote by Doris Lessing on my Facebook wall and I latched on to both the words and the image with an enthusiasm that even Elmo from Sesame Street would say wooooaaaah, calm down, you’re giving me a headache.

The conditions are ALWAYS impossible! #aptAF

The laundry always needs to be done, there is always something wrong with some electronic thing, something aches, I’m a pile of nerves, I can’t find something, I’m sick or the baby is sick or the dog is sick or my husband is sick and oh now it’s time to make dinner.

The conditions are always impossible. The news is Horrible. A guy that survived the Las Vegas shooting got shot in the Borderline Bar & Grill shooting, and now there are survivors of the Las Vegas Shooting annnnnd the Borderline Bar & Grill shooting. How are THOSE survivors going to live their lives? How do you survive two shootings and then walk around this earth?

The conditions are always impossible. You’re not loved enough or you’re loved by the wrong person or the person you love is impossible or you’re impossible and great now the baby is crying.

The conditions are ALWAYS impossible.

That’s why you do it now, friends.

You write the book.

You write the poem.

You start the company.

You kiss your sweetheart.

You do the thing that is meant to get done. The thing you want to do. The thing that counts.

It reminds me of an Ani DiFranco line I loved in high school (so here are pics from high school):

“You are what you do

in order to prevent becoming what you’re busy not doing

and if you do do it truly

you arrive at it duly and in the end you are resolved,

and the problem of Heaven is solved.”

Or as Gilda Radner would say, “It’s always something.”

Right. It’s always something and it’s always impossible.

So?

Do. It. Now.