As usual, I have a zillion words tumbling through my mind but when I open my computer, they scatter and I have to grab them quick before they disappear.
Yesterday was a good day, overall. My dad still seems to be stable. He’s just so weak and tired, it’s hard to see him like that. It’s still taking awhile for people to understand that he can’t easily pop up from the couch and do a task. It’s a hassle getting around with the oxygen and walker. Whenever I’m in the kitchen, I try to check in to see if he needs anything.
I know how annoying it is to have to drag tubing around.
There are so many possible videos of my life showing the little things that are maddening about being connected to medical supplies - and I only need to do it for a few hours per day! I often end up carrying around my IV bag in my left hand, if it’s not in my little backpack - that took me months to find, it’s not easy to find a contraption to hold several pounds right next to the body - I feel so bad that he has to go through this.
They said if he does better on the anti-inflammation drugs, then it’s not the cancer. Then it was the immunotherapy. I should try to find people online that have gone through adverse effects from that drug, to see if there’s any information on how to handle it.
I rarely do research these days. I hate that. I hate that I don’t have the bandwidth for it.
Shit, I can barely get through correspondence, let alone do a deep dive on the Internet about medical stuff.
Whenever I’m going through these major shifts, usually during some sort of crisis, I find that the energy I’m giving off is so…much. I can see people backing away, even if they aren’t really doing it in real life, that’s how it FEELS. Some will back away for real. It hurts. It really does. But I also can feel my energy being so…big and hard and scary so I also get it.
Sometimes I feel like I AM the tornado.
I feel very lucky that I have people that walk towards me during these periods. I think the worst of this latest shift might be passing. Fuck. I thought the one in the winter was tough, this recent one came crashing over me so quickly after the other one. I had a week or two break, if that.
If you’ve ever gone swimming in the ocean - something I LOVE to do but those days are over - I’ve freaked people out by how far out I’ll swim, I’m not the most skilled swimmer, but I’m strong, and I’ve learned my lesson over the years about when to avoid a tough tide. When I was 15 years old I went swimming in the ocean in Israel and I didn’t read the water right and went too far out. One of my friends (where did he end up?) thankfully was a super strong lifeguard at home and swam out to get me. It scared the fuck out of me, so I’ve been more careful over the years, especially when traveling on my own - then you know that sometimes the waves come right on top of each other.
If you don’t get enough air in between them, it can get pretty scary. Of course, that was part of the allure for me. I liked the challenge, both physically and mentally. I used to love taking those kinds of risks. Sigh…I’d never put my body at risk anymore, but I’m glad I did when I could.
I guess that’s why I still like to challenge myself in other ways. It’s such a part of who I am. I could use a LITTLE break from major life challenges though! So that maybe I could pick my own challenges!?!? That would be a nice change.
I ended up having a really good time catching up with a friend that travels a ton for work. We met at a little joint on the water because there’s nothing more delicious than a summer evening in Seattle on the lake.
Before she arrived, I looked at the menu which was depressing. I try not to but I can’t help myself, it’s so ingrained. There were “vodka-battered asparagus fries.” Three delicious things, together. I LOVE fried food. I’m not a sweet tooth, I like the crunchy, deep-fried, salty foods.
If we ended up in a diner in NYC after an evening of drinking, it was always fries for me. I’d watch friends order pancakes or something else sweet and I’d just shake my head.
Diner fries RULE.
I’m having a really hard time with my diet these days. I’m hungry a LOT. It’s been hard on me. I already have so much tough stuff going on - to have to handle so much when I’m able to eat so little is fucking hell. When I was able to eat 8 eggs per day and a little fish, I did MUCH better. Of course, that felt really hard at the time.
THIS. This is a whole other level of torture. I think if I was able to eat more eggs and fish, I’m able to handle the delicious menus a little better.
But when I’m able to eat so so little, and can feel the hunger so much of the day - our bodies just aren’t meant to live on mostly liquids, it’s not how our systems work - it makes everything that much harder.
It’s hard to explain to people who have certain expectations of me how much this factors in. My poor dad is dealing with all of this with his lungs WHILE having no stomach and most of his colon gone!
Lynch Syndrome is so joke, man. It is no joke. You’ve got to have a spine of steel to handle all of this.
At the restaurant, there was this guy behind my friend that was clearly eavesdropping on our conversation (which was interesting, if I can say so myself, this is why I like doing podcasts with friends, might as well share those fun chats). I noticed him and I’m mentioning it here because it gives me an opportunity to explain a few things.
One of which is why I find the social construct around beauty in our country so baffling.
This guy was traditionally attractive, like model hot.
I felt sorry for him. Beauty is so revered in our culture, but I’ve seen it bring people a lot of pain too.
The reason I find our culture’s obsession with beauty so fascinating - and perplexing and maddening - is because it really says nothing about a person.
Like absolutely nothing. Simply the way the DNA rearranged itself inside someone’s body before they were even birthed into the world.
Lately, I’ve been wanting to write something on facebook to remind people to not think they know everything about everything simply because they were born lucky. So many things people act obnoxious about is based on the fact that they were just lucky!
I was born unlucky, in many ways. And very, very lucky in many other ways.
I recognize this which is why I do what I do. I got 14 blessed years of good health as an adult and I’m going to leverage every network I developed during that time to help the less fortunate.
For as long as I’m around, of course.
The vibe I got off this guy was pompous - no surprise there - but also lonely. I often get two feelings like that. Sometimes about the character, sometimes temporary like the lonely part.
One of the main reasons I’ve always found beauty, especially in men, not terribly exciting is because I spent so much of my adolescence surrounded by hotties. I think this is explains a lot of why I think the way I do.
My older brother’s friends weren’t just cute, they were stunning. One modeled in Korea. Another one was called the “Greek God” at UW during college. And the third? Turned my friends into…how do I even describe it? Tittering goofballs? (seriously, if we had a family gathering now, if he showed up, they’d all start again, all these guys are 50 years old and still gorgeous.)
They didn’t just hang out at our house. They practically lived there. We are a short walk from the high school so it was often easier to just crash here. We always food and they got the hang out in this huge downstairs that I’m (hopefully) slowly turning into event space. One of them literally lived here after high school graduation and my mom took care of him after a surgery because his parents were out of the country. We got mail for him for years!
I saw these guys with their hair sticking up hunched over a bowl of cereal in the morning, freaking out about a test, eating like slobs, farting, yelling, making stupid ass jokes, stressing out about girls and tests. I saw it all.
When the girls at UW realized I knew the “greek god,” their eyes would get wide and they’d say “wait, you KNOW him.” And I’d just laugh. Because I didn’t just KNOW him, he’s like my brother.
I still think of him as that super skinny awkward adolescent with braces, freckles and tube socks pulled up to his knees.
And that’s what I still do. I try to see past the outer facade that’s presented and get to the real person behind it.
I’m not interested in anything else. So much of why I do what I’m doing now is because that’s what I’m interested in connecting with in another person.
But in order to attract that, in order to bring that into my life, I HAVE TO BE IT. That’s been a hard-earned lesson.
I will attract whatever I AM. So if I’m a drunken idiot who isn’t being honest with myself or dealing with things in a mature way, that’s what I’ll bring in.
If I’m hiding myself and scared to be my real self, you can guess what will show up.
This is why I’ve been working so hard on meeting people from different demographics. I’m still very new but the one striking thing about the poly people I meet is how freaking nice and open they are - it’s a generalization for sure, I’m sure there are people that don’t fit that - but so far, in my experience, I really enjoy the honesty and also, how sensitive everyone is to each person’s unique needs.
Dang! It’s so refreshing. When I was struggling and in pain, and trying so hard to fit into the regular world, I had no idea that I could say: this is what I need. AND THEN GET IT. What a novel idea! Having needs be met by considerate people who want to make sure I’m happy.
I hope it’s ok for me to be saying all of this! The other thing I’m nervous to say but I think my new friends would agree: poly people love to love.
Who doesn’t want to spend time with people who are loving and LIKE being loving? Maybe when I was having a hard time loving myself - let’s not even get started on liking myself, both are works in progress - that would have seemed like too much. It still feels that way at times! But I want to be as happy as I can in this fucked up body. I have so much struggle and deal with so many asshole situations (ugh, I’m realizing today is Monday and I should call the office that deals with food stamps, ugh, I dread it so much, they are only open half the day so I think I missed my window, I just put these things off over and over again which I NEVER did in my old life, but now it all sounds so hard, I finally asked a friend last night if she’d help me make calls and told her I was nervous to ask, and she’s like: of course I can do that, and don’t hesitate to ask. I knew she’d respond that way, I don’t think I could ask her if I didn’t, but it’s striking how hard it was for me to do even though we’ve known each other for years and years, but I did it!) hanging around people who acted loving would feel odd. Now, it just feels good. I learn how to be loving! That’s not a bad thing!
I also learn so much about how to communicate. I had a good conversation yesterday where I’m proud of how I communicated.
It’s nice to see progress. A relief. Wow, yes, ok this work I’m doing is exactly WORKING.
Until we can create a world where we really do honor people’s individual self and those individual needs, we are going to have high rates of suicide, and drug problems, and sad/angry people shooting others, and abusive behavior, and all that.
I think my friend on the Divorce podcast (which is an excellent one if you haven’t listened yet) said it right: the root of so many of our world’s problems is because so many people don’t love themselves. We will truly struggle to be loving in a general sense if we can’t love ourselves.
Hate can feel easier. Anger, for sure. I don’t hate easily. But I spent a LOT of years angry.
Anger is almost always a cover for emotional pain. It feels easier to lash OUT.
It’s easier to see in kids, they lash out or get depressed and internalize everything.
Adults do the same thing if we’re not handling our shit.
I can attest to that. This is why I spend so much time on the podcast looking at pain and love and struggle.
Notice I haven’t mentioned anything about the personality of those three dudes? They happened to all be lovely human beings. One kind of disappeared but I see the other two off and on and they’re doing great.
Beauty doesn’t guarantee shit. If anything, it can make life harder. I read somewhere that beautiful people get used more often. It seems like an obvious thing but I remember reading that and thinking about what a sad state of affairs we’re in if are even using someone in the first place, let alone because someone’s genetically lucky shell happens to look a certain way.
I find it SO strange when people think they’re better than someone else because they were lucky at birth! It’s so random who ends up with what!
I try to remind the kids to always see past the shell. I don’t know how good of a job I can do with that in this warped culture of ours.
I mean I get it! I do. I’m drawn to the prettiness too! I’m not immune. Like I said, though, if I get gross energy or there’s no chemistry, then forget it. I’ll admit, I would pass over someone that looked like that guy at the restaurant BECAUSE of his looks. I’d make a bunch of assumptions, oh he must be a dick, or he must have a ton of people interested already. (I’m not saying I’d have a chance with him, I’m just saying in my old life, if I came across his profile and I was still looking the way I used to, I’d probably pass but then I’d think, what if someone passes on me because I have red hair or big boobs? Ugh.) This is the danger of online dating, for sure. We make way too many assumptions about someone, both good and bad, that may not be at all rooted in reality.
I felt sorry for him because I remember what it’s like to be alone on a Sunday. Maybe he wanted to be alone! I like spending time on my own in random cafes, when I’m up for it. I REALLY like people watching (obviously), it was one of my favorite past times in New York City. I’m just saying that was the vibe I got and it reminded me of my own lonely weekends in a city without any family.
During a particular lonely time in my life in NYC, I hated Sundays. When I lived in Brooklyn, I had a serious party period. I ended up engaged to someone I met through this one group. I met him when I was DRUNK surprise surprise. When all of that imploded (one day, I’ll admit to all of the engagements…yes, there is plural, ugh I am cringing just writing that, but it’s part of my story so it’s gotta come out eventually! Ok, I’ll just admit one factoid now: I have trouble remembering the number…isn’t that terrible?).
It was around the time that I started taking writing classes - around 2005 - so I ended up in a super introverted period. I’d go to work during the week, go to the gym, clean up the kitchen after my cooking classes, get home around 11ish, take a shower and then write until 1 or 2am.
I’d get up and do the same thing all over again. Day after day. I remember walking by all the laughing people at the bars and restaurants on the way to the subway. I wanted what they had, but I also knew I had to become a better writer.
I didn’t know why. It bugged me that I didn’t know why this urge was so strong. I remember carrying my heavy book bag out of my work, feeling the weight of the world in that bag.
It was so so strong, this certainty that I had to do what I had to do. That I was different.
My writing was terrible back then. I’m always hard on myself about my writing. But it REALLY was bad back then. Oh, my teacher and classmates were so mean about it!
But I never gave up, no matter what they said or wrote on my pieces.
I’d go home and keep writing.
I was always writing in my head, in first person, like I was narrating my own life. Since I was a small kid. As I got older, I felt that my thoughts were fairly interesting but when I tried to record them, it would come out a jumbled mess. (Dupe! Dupe! One woman in my class would write that over and over on my pieces. She had many years under her belt as a magazine editor. Gd she was such a bitch. Dupe stands for duplicate. I’d often use the same word twice in the same paragraph. Eventually she’d stop even writing “dupe” and just circle them with a red pen. I put up with all their shit because I knew it would make me a better writer. And I think they did. I hope they did.)
This is what I wanted to do. What I’m doing here. Be able to write what I’m thinking. Take my thoughts and get them out “on paper.” This was the dream.
I just didn’t think I’d be immersed in hell while I finally did it. But the thing is: I don’t think I’d have the nerve to do this, record my stream of consciousness, if I wasn’t going through so much pain.
I’d be too scared.
I still can’t believe I’m saying what I’m saying out in public. It’s so weird. It’s like the old self isn’t as strong as the new self anymore. So the old self is trying to grab the computer and shut it. And the new self is brushing that version of me off and saying: bitch, I got this, let me say my piece. If I’m dead in the next few years, this will be a way to live on. And who the FUCK CARES what anyone thinks? The old version of me, still trying to grab the computer is yelling: ME, I CARE! I Care what other people think! Stop, stop why are you TELLING THE WORLD THIS….ARRRRGGHGHGHGH. New self: do. not. care.)
Writing in here daily has been an excellent way for me to process things. I know it’s all too long, but I’ve decided this is my place to ramble. I can write stories / pieces to publish and share those on other pages / places. This is my place to let it OUT. It’s not just to feel like I exist when I write in here. I can reflect here on what I’m going through, make connections, realize what I’m still struggling with, recognize the progress I’ve made.
They told me I’d never get published. The teacher straight up told me to my face that I’d never publish a book.
I nearly killed myself proving him wrong. That’s on me, of course.
Years later, I was hobbling around with my cane after my melanoma surgery, attending a food conference of all things. And he was on the panel! He was a well known writer. He was a ghost writer on a ton of books and also had a bunch with his name as the author.)
He was such an asshole to me. I should google him and see if he’s still alive. He wasn’t so young then.
Anyway, I happened to have my cookbook on me. I must have known he was on the panel? I don’t remember. This was almost 10 years ago now! I can’t believe I published my book nearly 10 years ago!
I slowly walked up to him, with my cane in one hand and my cookbook in the other and showed it to him. He could barely talk. He obviously felt some shame because he knew he’d been awful to me - and on top of that, I’m a young woman with a cane now - and he spit the words out, literal spit came out of his mouth when he said: I’m really proud of you.
Vindication is sweet.
But at what cost?
Like I’ve mentioned in other posts, when the oncologist theorized that the tumors in my ovaries had been growing for “about three years” in early 2014, I said without missing a beat: I know exactly when they started growing.
The year I got the book out. The year I had the melanoma. The year I had my one and only flare-up of inflammatory bowel disease in the span of 15? 16 years? Something like that.
I was a fucking mess then. Emotionally. Physically. Mentally.
I ruined myself trying to achieve a lifelong dream (ok, and prove someone - a white man - wrong).
That’s why I’m so fucking reluctant to push myself out further NOW. I’ve had people following me on IG lately. My podcast is getting around. On IG, the number dropped back down under 800. My first thought was oh no! My second thought was: good.
I’ve got to figure this out. I’ve got to figure out what I can truly handle. I’m so scared that if I get more readers or whatever, that I’ll ruin my body and my mind. That I won’t be able to handle it. That the stress will get to me.
That it will kill me for good this time.
That’s a heavy burden to carry. But I also feel like I have something that needs to be heard. The kids love what I’m doing.
Oh! I forgot to mention here. Within HOURS of me mentioning middle children never feeling like they get enough attention, a kid said to me: I had a poetry slam at school. He knew I’d want to hear about this. Oh and what did you share? I asked. He goes to get his device to show me.
He says: it’s about how being a middle child sucks.
I’m telling you, shit like that keeps happening. I was worried about posting that comment about middle children and was thinking about deleting it. Frankly, I’m more afraid of parents yelling at me on the Internet than the trolls.
The parents can be vicious. And the fact that I’m NOT a parent. OMG. I’ll try to stick to the teacher stories because nobody can argue with that. I taught for two decades and was a curriculum writer. But aunties and uncles don’t have a lot of value in our culture. Which is such a shame.
Sharing so many of these thoughts I’ve been having for years is such a relief. But it makes me SO nervous to say anything that goes against the grain.
One of them is: how do we make sure kids are really heard? I won’t share all of it but had to share part of it - this was his ending: “Being a middle child is kind of awful, You’re not the oldest so there’s not as many privileges, You’re not the youngest so you can’t always be innocent, You’re stuck in the middle, And it’s not fun, because having that roles plays you like a dang fiddle.”
Ha! A budding writer (minus the grammatical errors I fixed). He said the whole room cheered and complimented him afterward.
We need to listen to them. I mean REALLY listen to them. I admit, I was spacing out when one of the kids was giving me a book report yesterday (I asked him about what he was reading, that’s what we call it when a kid who loves to read starts rambling about their books).
It’s hard to listen to kids ramble! I get it. I’m not the parent who has fifteen other tasks to attend to. This is one of the reasons I like being auntie. I get to listen to them talk about stupid shit and not being stressed out about what any of us aren’t getting done.
Our culture is so busy! Dang, so busy. Wasn’t the whole point of inventing washing machines and other devices so we’d have MORE leisure time? Why the hell does it seem like the more technology we have, the busier we get? What are WE DOING with all our of time? Is it just these smartphones that suck the time away?
I was so proud that my average use was only 3 hours per day this past week. I find that I can’t be immersed in the Internet if I want to create a lot of content. I’ve got to keep my brain as free as possible. I’ll always be a news junkie. I’ve always been a news junkie. My friends used to make fun of me for reading the newspaper and serious magazines in college and our twenties.
I always felt like a little adult so it didn’t feel odd to me. I like reading the Economist! And the Atlantic is my favorite. I miss reading magazines. I miss choosing my own content instead of letting Apple do it for me. I know I know, I could curate it better.
Doesn’t matter. The fucked up shit is elsewhere.
Because. The fucked up shit is everywhere.
I’m glad I wasn’t lonely yesterday. I’m glad I can see the kids on Sundays. I know I rip on Seattle a lot, but I am glad I’m near my family as challenging as it can be to be immersed in it. Maybe that’s why I needed those lonely Sundays.
So I’d appreciate the Sundays like yesterday, filled with sweet smiles and little hugs.
I told my niece I might not make it to her play. I laid my hand on her cheek as I told her. She moved her head so that my hand was sandwiched between my shoulder and her cheek and said: please come.
How do I say no to that?
This is why I didn’t have my own family. At the core, that’s why. I knew I couldn’t handle that feeling of never having enough attention for them. I wanted to feel free.
Turns out that if we have people that love us and who we love back, we’re always going to feel torn. It’s just part of the deal.
I’ll take the torn.
I don’t want to be that guy at the restaurant anymore. It reminded me of how far I’ve come from being that lonely woman in Brooklyn. That would wander around the park and wish I could hang out with the large families speaking Spanish, barbecuing on little grills. Or, browsing the bookstore for hours at a time - which I LOVE to do but gets old after awhile, like anything else. Or, get a burrito and eat it on the couch, making a mess.
I’m glad I had all those experiences. I feel like those introverted years in Brooklyn were really when I turned my adult self into an artist. Plus, I got really comfortable with myself, and being alone.
I never wanted to be someone that couldn’t be alone. My mom said her dad always told her: never be alone. I felt like that was dangerous.
I never wanted to end up in a situation where I was afraid to leave a bad situation because I didn’t want to be alone. It’s why I kept letting go of situations in my twenties. I didn’t want to be someone that couldn’t be on my own.
The problem is: I got a little too good at being alone. Sigh.
Now, the trick is letting people in. And keeping them there. I don’t want to be the Cut-Off Queen anymore. Ugh. Just that term makes me feel awful. But I have to own it. I have to accept that I did it. I have to recognize that it’s my default.
That’s been one of the hardest lessons of my life: the further I try to run from something, the worse I make whatever it is I’m trying to avoid.
Facing things head on is the only way to heal something.
For now, I can only focus on healing my mind. Perhaps the body will follow? Many in the alternative fields would say yes.
I hate to get excited but I’m not dehydrating like I was before the trip to Oregon. I don’t know if it’s the estrogen patches - the only major medication change I’ve had recently - or maybe a different dose of the thyroid medicine? I don’t know. All I know is that I’ve been outside a lot lately and I’m managing ok.
I’ll take it.
Heal the mind, the body will follow. Kinda cool tag line.
Plays me like a dang fiddle, this mind of mine.
Fuck just got an email from my doctor that my blood sugars are low. I work so hard at it too…argh.