What is normal anyway? 5.31.19

This was taken AT an event my friends hosted on my behalf after my surgery, around the time I started chemo. I can’t believe it’s been 5 years! This is my friend Erin who saw me through some rough times! Look how much hair I had on the top of my head! I can’t grow bangs anymore.

This was taken AT an event my friends hosted on my behalf after my surgery, around the time I started chemo. I can’t believe it’s been 5 years! This is my friend Erin who saw me through some rough times! Look how much hair I had on the top of my head! I can’t grow bangs anymore.

There was a woman standing on the corner of 15th yesterday. After acupuncture, I forced myself to stop and get some vegan ice cream. I know that sounds weird but I really do have to force myself to seek it out now.

The store bought brands make me gag. The two little shops on 15th rotate their flavors often enough that I try to buy a couple of pints when I’m nearby. High quality vegan ice cream is a good source of calories.

Definitely better than those awful meringue cookies from Trader Joe’s that I only eat because I like the crunch, which I miss desperately.

You know by now that I hate sitting in judgment of how people look and/or drawing conclusions about them based on their outsides.

But for the purposes of my story, I must describe her.

She was wearing a drab brown dress that clung to her mismatched nylons. She had long brown hair, and glasses. I couldn’t see her face, but I already knew by the way she stood: she wasn’t the type of person that you remember very well.

I felt so much envy. She probably has a really nice boyfriend. Maybe they watch Game of Thrones together after buying groceries at Costco. And make plans to go hiking the next day after brunch with friends.

Maybe she’s miserable. Maybe she’s one of those always content types.

So many people want to be special.

They don’t understand that they already are.

Each person is a puzzle piece in the grander picture. If we’re spread all over the table, not connecting, as we tend to do as humans these days, we struggle to see who we really are in the larger picture shown on the box that the puzzle came in.

It’s only when we are connected, piece by piece, with the surrounding colors and images, that we can see how important our own section is to the larger picture.

We all fit together, somehow, no matter how it looks like we couldn’t possibly.

My home nurse just left. The entire time she was here - we had a lot to do because I finally have standing orders for lab draws wahooo only took 2 years - my dad’s new home health nurse was with him.

If I hadn’t gone through what I’ve gone through, I wouldn’t have known to advise my mom at the hospital: make sure we get EVERY home health worker possible. She rarely cries these days, but then they told her they were sending him home on Tuesday, she balled.

It’s terrifying what they expect us to do. But it’s more terrifying to have to be at home wondering if you have to go in.

The nurse evaluated him and said: yes, I will be sharing my report that this man needs to be seen three times a week by me, and also should get the PT and OT (physical therapy and occupational therapy).

I hear my mom ask the nurse: are you a hospice nurse? Yesterday the oncologist said something about hospice nurses?

This was new to me so I’m trying to listen to the answer while my nurse is speaking to me.

No, I’m not a hospice nurse.

This is how people find out that their loved one is dying? By a doctor sending out a hospice nurse and not explaining why?

I often give away clothes. I hate having something in the closet that I never wear. At the hospital this past week, I gave someone a pair of sneakers I bought an outlet store a few years ago, back when I thought I’d have a life.

She kept asking: why are you giving these to me? They’re barely worn.

And I kept saying back: because they’re barely worn, I know you’ll enjoy them. Just take them.

Never once did it occur to her why I would be offloading my stuff. Or maybe it did, and she just doesn’t want to say it out loud.

Every puzzle piece looks so forlorn and like just a blur of color.

Until it clicks in the pieces around it.

I know i shouldn’t be envious of this woman on the street. What is it that they say? If we all threw our problems into a pile, we’d take our own problems back?

Not me.

I’d gladly grab whatever the hell else is in that pile. I would! I know addiction, mental health illness, abusive history, loss of a child, there are so many horrific things I could end up grabbing.

I’d take any of them.

I wonder if I was all dressed up with make up and all that, if others wish for something I have.

We spend too much time doing this, myself included. Wishing for something other than what we have.

I hope I’ve made it clear by now that I don’t want to do this job. Maybe I did once. I think I did once. It’s getting harder and harder to remember how I used to think. How I used to edit myself so carefully. How I stuffed my feelings down. Or thought of myself badly.

I can still do those things to some extent! I’ll probably always struggle with some issues around self worth. But what motivates me is seeing these young women, fighting for climate change, or combatting body image bullshit on the Internet, or feeling scared to embrace their true self.

I have a photo of myself around 10 years old on my bathroom mirror right now. It’s going to go with a post called “I’m done being bullied.” I often have these title pieces in my head, but I have to wait for the moment where it feels right to share them.

I look at that dorky little girl with the bifocal glasses and the chubby thighs, my bright red hair. I remember how it felt to be her. How awkward and weird and different she felt.

I also remember something, I have no idea how I had it so young, and how I STILL have it.

This burning desire to push the boundaries around me, to be an advocate for others who are bullied, to stand for truth and justice and take on the scariest shit going down. I wanted to become the strongest version of myself I could become.

How ironic that I only managed to do it when I became physically fragile and embraced my weaknesses.

I’ve pretty much confessed everything I needed to confess. To make sure that if anyone enters my orbit now, they understand what they’re getting. To understand that I can’t pretend anymore. That I want to continue pushing boundaries. Talk about things that few people will talk about. To amplify voices that deserve to be amplified.

That I can no longer be anything other than what I’ve now become. It’s been such a long and arduous journey to get here.

I have a sense of what’s coming next. But it’s still blurry.

I only know this for sure.

I’d like to be the one standing on the corner of 15th with a gaggle of girls walking by and looking over at ME, and thinking to themselves: can I do that? Can I be different and weird and go against all the norms?

And still be accepted and loved for exactly who I am?

Yes, my darlings, I would turn and think as I looked at them back.

Yes, you can be whoever you want, and you will be accepted and loved for exactly who you are.

I'll do everything in my power to help create the world where that is possible.

And they’ll walk on giggling about something stupid.

I won’t walk right away. I’ll pause and think about the little girl in that photo from so long ago. And I’ll think:

I did it.

I became me.

Fuck everything else.

It’s all I ever wanted.

Much love,

Jules