Edith is missing my dad 5.25.19



Let me tell you about Edith.

I got this plant at a nursery when I was 20 years old. I was trying to have a “grown up” home (hahahahahaaaaa whatever that means!). I’ve always been drawn to plants even though I still have not fulfilled my lifelong dream of having a garden.

She stayed with me through a lot of changes in my twenties. When I decided to move to New York City at age 29, I moved her to my parents where she has stayed ever since.

My dad has a whole system for watering her. As we often do, he and I developed an unspoken agreement that he would water her and care for her when I was gone. When I’d come home to visit, I’d trim her leaves, add more soil and sometimes give her some plant food.

Our plan must have worked because she is 28 years old this year!

Ever since his health worsened, she hasn’t been looking so good. I’ve been trying to water her regularly, but her leaves keep turning brown. Last night, even though her soil was moist, her leaves were drooping and facing one direction. They were all leaning toward the kitchen and away from the window.

I think she misses my dad.

It’s been a really rough week. I did get some hopeful news from my mom today though.

If anyone wonders where I get my tenacity from, I wouldn’t have to hesitate on giving an answer.

My pops.

I don’t want to make it sound like he is some paragon. Far from it. He is stubborn. He isn’t the greatest communicator. We’ve always butted heads.

My mom just laughs and says it’s because we are so similar. We don’t just share the Lynch Syndrome gene!

Apparently, he was doing leg lifts today in the hospital. I felt so much relief when I heard this!!! There he is! The fighter still remains.

I texted her a few minutes ago and said: will he drink the chicken broth? The magical homemade chicken broth that is likely why I’m hanging on the way I am.

She wrote back: yes.

Ok then.

His peanut butter pretzels from Costco aren’t going to cut it this round.

Because I have a plan.

I’ve been through hell and back. More times than I can count.

But the whole time, I remind myself: Jules, you’re learning things that will help other people. You’re picking up info that the doctors don’t pass along to patients.

You’re creating a library of resources.

(Now if only I had the bandwidth to download this information to the Internet….)

I didn’t think I’d have to use this information for him. Now.

But he has to be willing! I’ve learned that many times over.

You can’t will someone to have the will to live.

They either have it or they don’t.

When some doctor friends came by the room yesterday, they shared hard news. It’s so tough when mainstream medicine share only doom and gloom, only because they refuse to endorse anything outside of their tiny toolbox. My mom and I are like: stop saying this in front of him! He is still old-school and believes it.

I responded: if anyone will beat the odds, it’s my dad. Neither my mom or dad should be around, several times over.

I turned to him and said: you can do this, Dad. They don’t know you.

Whenever I think of the look on his face….

I wasn’t sure the Will was still there when I saw the resigned look on his face.

But leg lifts today it is! He insisted on sitting in a chair too!

I’m so fucking tired today. Getting out of bed to go to the bathroom sounds hard. Even typing is tiring.

I want to go visit so bad. But I’m not sure today is the day.

I wonder what Edith looks like today. I took this last night, obviously. I should have edited out my reflection which didn’t seem as noticeable on my phone.

He’s going to have to drink nasty stuff. Dr. Huang herbs. Concoctions I will make for him.

There is no room for error now.

My mind gets so scattered when he is unwell.

When I’m unwell, I’m not the sharpest. But for some reason, when he is unwell, I really lose my shit.

I know it’s partly because it’s my dad! Like a lot of people, I’ll never be ready to say goodbye to my folks, even with our issues and struggles. Still don’t want them to leave yet!

I also am realizing how comforting it is to have someone close to me who knows what this hellish journey of multiple cancers is really like.

I look to him when I’m at my weakest, and I find strength. He’s keeping at it, I think. If he isn’t around for me to look to….

I wonder if now I can return the favor.

When he said he’d drink the chicken broth, I felt some hope for the first time in awhile.

He knows he’s going to have to do what I’ve been doing.

Singular focus on survival. Drink what he needs to drink. Build those muscles back up. Weakness only begets more weakness. Whatever we can control, we must strengthen.

Oh, I keep meaning to share my podcasts here even though I literally think I have only three readers (thanks my readers for reaching out and checking on me! I’m sorry I haven’t gotten back to you yet!). Gotta start cross-marketing. I dreamed up this plan so long ago, I can’t believe it’s actually time to tie everything together and push it out into the world.

My latest episode is on vulnerability. I shared a hideous photo of myself on the sex, drugs, and disability instagram account today (look at me cross marketing like a champ). Fuck it. I’m tired of all the perty photos and then the one photo where a woman shows some minor ugliness and the Internet lights up with awe.

I’m willing to share ALL the ugliness now.

It was hell getting here.

I honestly don’t know if I’d have the courage if it was just my life at stake.

Now that it’s my dad’s life on the line. And his mental health and worry about supporting us?

If I can alleviate that at all by finding a way to generate income, I’ll do it.

I wish I wasn’t so stubborn about doing things independently. It’s just that I feel like one of those little kids that’s like: I’ve got this! I can do this by myself! Let me try!

I’ve made it this far on my own. I’m going to keep at it.

I’ve sacrificed too much to change course now. I guess that’s how I look at it. It wouldn’t be “me” to find the easiest escape and not work for the greater good.

I’d rather become the hard, tough bitch that is emerging now, then remain the way I was.

I have to do it this way.

The whole thing sounds exhausting. I used to want it so bad. To have the platform. To BE somebody.

Now that it’s here…it just makes me tired. I don’t want the job anymore.

Am I even making sense? My head is spinning from everything. I’m so hungry this week. Which is a good thing! But it also sucks because I want to eat normal food when I’m this hungry. It’s much easier when I have less of an appetite.

But I’m counting my calories these days, making sure I take in what I need to. My weight has stabilized, but my frame seems to be stuck where it’s at.

I’m only now recognizing how different I appear. I’ve lost that roundness. I’ve lost that softness. I’ve lost so many things.

My frame is angular now. It makes me look older. Harder. Less feminine. For some reason, I don’t mind any of these things. I know I should mind losing that youthfulness I had for so long. I realize I still am doing pretty all right! Especially given what I’ve gone through. I also know I should technically - according to our culture’s standards - dislike how androgynous I appear now.

But I don’t! The world is a shit place for women these days, always have been, but now more than ever. I wonder if dudes realize that I’m just the beginning. The young women are going to find it themselves, whether they find me online or not (that lovely young woman who said my podcast has impacted her life recently shaved her head…hmmm…I know the Parkland kids are too so it’s a “thing” that has nothing to do with me, but yeah, I wouldn’t mind inspiring some militant haircuts. If they’re going to treat us like SHIT, then we have no choice but to turn ourselves into soldiers).

I LIKE that my outside is finally reflecting more of how I feel on the inside.

I have to shut my eyes. I feel like I’m always writing that.

I don’t think I can make it to the hospital today. Knowing he is doing ok, and that my brother’s family is in town keeping him company, makes me feel like I can rest. All my siblings are there today. My sister and brother who keep Shabbat stayed over. This is good for his spirits.

It’s funny. He is not in touch with his emotions at all, my dad. Though, he cries at the sappiest things on TV - I do the same thing, we’re tough as nails but show us a sweet commercial and we’re both weeping - yet somehow, he created this family full of passionate people. I recognize that a lot of that comes from my mom and her family - I think “passionate” is an apt word to describe them.

Despite his emotional limitations, he created a world in which he is always surrounded by people who love him so much and will fight for him.

I don’t know what to write about that. Or how to end this. So I just will.

Much love,