How is this all happening? 6.23.19

Book stores are my happy place. I used to fantasize living in a book store. Or being locked in one. I thought that if I ever had all the time in the world, I’d try to read as many books as possible. Now, I can barely read an entire novel in a month. When I was really isolating myself, I’d read 2-3 books per week. I love the written word so much.

Book stores are my happy place. I used to fantasize living in a book store. Or being locked in one. I thought that if I ever had all the time in the world, I’d try to read as many books as possible. Now, I can barely read an entire novel in a month. When I was really isolating myself, I’d read 2-3 books per week. I love the written word so much.

I still can’t believe this all happening. It’s been so fast.

He is so tired all of the time. My mom said he doesn’t have much appetite. That’s not a good thing. ESPECIALLY while on the drug, prednisone which usually increases the appetite.

My mind is swirling with words even though I wish I could sleep more. I can’t stop thinking thinking thinking. Too much to wrap my head around.

Yesterday, I couldn’t sit in this house. I made sure he was ok after the appointment. He handled the taxol like a champ. I will share the story of how I didn’t do well with the taxol in my medical stories series. I can feel those stories bubbling up. I was wondering if they would ever come! I can’t force the stories to come out. I’ve learned that the hard way.

The words have to find me. I can’t find them.

After visiting with a very sweet kid (how did I get so lucky when it comes to these kids?), I took off to Whole Foods in Ravenna to get the large protein drinks. It’s the only store I can find them. I text Bestie that I’m headed to her neck of the woods.

I get a few texts a few minutes later: don’t go to the store! I already bought all of the ones on the shelf!

She was out so I had time to kill - which is such a rare thing these days - before she got home to hang out.

My favorite herbal store was closed so I moved onto the bookstore next door.

This keeps happening. I end up where I’m supposed to be. At another store, I remember chatting with the two guys about the old cash registers. I told them how my oldest nephew doesn’t understand how we handled driving around without phones. That is super baffling to him still.

I’m determined to have him learn how to read maps. I wish my dad was feeling better. He’d be a good teacher for that. I’m determined to make sure these kids can survive without their dumb phone!

Anyway, these two guys and I lamented how we used to have adventures from getting lost, or not having everything told to us by our phones.

That little restaurant around the corner looks good (before Yelp). The conversations we’re not having because our nose in our phones. The spontaneous happenings that occur when we don’t have SO much information.

If I’d checked Yelp about when the herbal store closed (which I almost did), I may not have stopped at the store.

I could feel a book calling to me. I know I know. It’s weird. My mom has always joked that she has a sense that a clothing store has something for her (it doesn’t take much to find a reason for that woman to shop).

The first book I picked up was by a nurse that discusses death, and everything around it. I love her writing. I decided I was going to buy it. Even though I rarely buy actual books these days.

I almost never buy anything that isn’t completely necessary. Why collect shit when I have bags and bags of crap to take to Good Will? I’ve never been a big “thing” collector, but now I really am opposed to buying anything that’s unnecessary. Not just because of money, but because I don’t want more “stuff” junking up my space. And. Consumerism.

The same reason I have trouble figuring out what to wear. My bandwidth is so limited. As I write this, one of my new friends is giving me very specific directions to that party next weekend. I appreciate how organized and proactive these new people in my life are. I had a coffee date with another new friend (a date?) and she was so flaky about the whole thing, I dropped it.

I can’t do flaky. Or take on the burden of always being the organized one anymore. I did it for so many years. Cruise director! Right here!

Nope. I just don’t have it. I can’t even tell if I have the right protein drink! My goodness, that drink is like 70% of my daily protein.

I’m barely keeping it together for my survival tasks.

I was supposed to go to a cuddle party this evening with a new friend. But when we both realized it wasn’t free, we were mmmmm…..what if we hate it? I DID promise I’d do it on my podcast, and I like to keep my promises. But I’m not sure I have the bandwidth.

The more I open up, and the sensing can come through, the harder it is to be around crowds. In New York, I had to shut down in so many ways, just to survive the city.

I didn’t sense much there. Though, I could tell when someone was bullshitting me right to my face. But beyond that, nope. It’s always been easiest for me to sense things when I’m based in Seattle. Don’t know why. It’s exhausting. Picking up what other people are feeling.

The book I found was called Advice for Future Corpses by Sallie Tisdale. Great writing. I just got it out of my car along with the other book that’s about a trans man discussing his take on masculinity which I find super interesting.

What IS it like to walk the world as one gender, then experience the other? So much insight.

I also bought a candle. It felt so awkward, I almost put it back. But I really do like my nice candles for my baths! The baths where my left arm has to be propped over my head. I do worry that I’ll fall asleep and my arm will fall in.

Bestie is more worried about other bad things happening when I take baths.

I promised her that I would awaken quickly if my arm fell in! Plus, I don’t fall asleep that hard - even on all my herbal concoctions. I’m always aware. I can’t help it.

I’m more worried more about getting out of the bath and falling wrong. I try to be very, very careful and not get cocky. I’ve always had really good balance, but I do get off-balance now when I’m tired, or don’t have enough food in me. It’s scary for sure.

When I’m feeling all right, I can stand on one leg for MINUTES now. I’ve got to share the weird exercises online, if for no other reason, because it’s trippy.

There may be a day when I simply can’t be left alone too long…I think I’m being stubborn because I don’t want to admit how fragile I am.

I love being independent. So much. It’s so ingrained now. I am really grateful for the people taking care of me. It’s a good thing for me to experience. But I’ve been on my own so long, it also feels so uncomfortable.

Sometimes, I worry I won’t ever be able to pair up. I’ve been worried about this for a long time.

I’d get set up on blind dates in NYC with “nice Jewish men” all of the time. I rarely said No. I’m always up for a good conversation. Even when the date was a disaster, I’d find it entertaining as a writer.

I started to notice a pattern. The dudes that were around 50 and never been married? They weren’t ever going to settle down. Been too many years. I never wanted to be like that. Stuck in my ways.

Unwilling to try a new protein drink. Or a person. Or a mindset. Or a path.

I want to be open to all things, always. But it’s hard. There’s an extra bedroom at the end of my hallway. People used to stay in there. But now, it’s got boxes that need to be taken to Good Will. Just the kids stay in there.

If I have to have a caregiver of some sort live in there, then I will. Just thinking about it makes me cry. Who wants to be an old lady at my age? Needing someone to remind them that they left their purse in the doctor’s waiting room? To not be able to drive at night?

To not be able to cross a street safely? The ables don’t understand how terrifying their world is for us. How we’re

I see how fragile my dad is. He said he is doing ok today. My sister was making him a protein drink.

I want a good death, whatever it is. I’m terrified it’ll end up being chaotic, and last minute, and unnecessary, in a hospital room where I’m asking them to change the angle of the bed, and then I’m out.

But I don’t wake up again.

This is what I fear. This is why I’ve got to get a hospice plan in place. Even if I don’t need it for a long time, I’ll feel better knowing it’s in place. I want to control as much as I can.

This world.

I asked the cleaning people to clean the surfaces in my bathroom. She looked offended that I said something. Hard to be direct out here. I like directness so much.

Oh, I never finished my story from yesterday. So I buy my books, get a hot chocolate and exit because they have this cute little garden patio now. I sit down and hang my head. I hear a voice: having a hard day?

I end up chatting with the only other person sitting out there. She used to live on the east coast but was from here so we lamented all the changes. We agreed that Seattle in the 1990s was the BEST. It was SO needed. Just like that day I got stuck in the U Village, I end up with this kind of forced relaxation time. Of course, by the time I got to Bestie, I didn’t have much time before my invisible tether pulled me home. I was starving at that point (I often think, what is happening inside my body right now, when I haven’t had hardly anything to eat for so many hours, all day often).

I don’t know how I’m going to handle this.

I caught my mom before she went to bed even though I got home so late. We talked about how maybe this is better. That my dad would HATE being stuck at home on oxygen for years. He loves his bike rides and walk/runs outside with his buddies. He likes being active.

They are both much more empathetic with my situation now. Being stuck at home all of the time. They are now getting how some days, I can seem like my old self, hyper and chatty. And other days, I can’t get out of bed. I think today is going to be one of those days. I may avoid eggs. It’s so strange, right after my colonoscopy, my skin looks AMAZING.

Ugh. My body just doesn’t like having to digest ANYTHING anymore. Or, I wonder if something I’m eating (drinking) is causing problems. I’m trying so hard to be so careful. I got vegan ice cream again yesterday.

I’m making my eggs in this awful pan. It’s a piece of shit. But I can make the perfect egg “crisps,” I call it. If I cook the eggs at high heat, I can scrape them off the top and it leaves this crust.

It’s the only crunch I get without the TJ cookies.

God I miss crunch.

I don’t know. I don’t know how long I can do all of this.

It’s a running sentence through my brain, like a child’s train, running through, popping up throughout the day. I know this is going to be hard for people to hear. I’m thinking about writing a whole piece based on it for The Mighty. I have an editor there now who I’ve been corresponding with. Based in Ireland!

It scares me so much. To expand my Voice. I don’t know why. I worked so hard to position myself to be a writer. Worked SO hard. Sacrificed so much.

And here this guy is telling to send him any pieces I have! It’s like something is right in front of me, and I’m hesitant to grab it.

It feels like it’s in the same category as being taken care of - it’s all these things that I wanted for so long, and now I have it and it all feels so uncomfortable. I already have been existing for so long with the possibility of Death.

And now it’s coming for my dad. First. I didn’t see it coming. I sense some things. And other things catch me completely off guard. It doesn’t feel real. None of it.

I don’t know how to process any of this. I’m SO glad I have an appointment with the new trauma therapist on Wednesday. But now I realized I have things Mon, Tue, and Wed evening. Hence the canceling of going out this evening. I don’t know how I do that. I need to get out so much, but it fucks me up, to not do my routine too many nights in a row. I can do one night off. And I’m going to a solstice yoga class on Tuesday so the movement will be good for me that night.

But that makes me realize that I will HAVE to eat eggs today and do my routine tonight. Because I usually don’t eat much on Mondays since I have improv on Monday evenings and I don’t get a full routine in. I can come home from the therapy appointment on Wednesday and get it done, but I’ll be tired.

So tired of being tired.

I get it if my dad doesn’t want to fight. He’s never going to admit that he’s done or doesn’t want to fight. Who wants to admit that?

How can I do any of this? HOW CAN I DO ANY OF THIS?

When I think of a funeral….

I don’t know. I don’t know how I’m going to handle any of this. The hits just keep on coming. The waves, big and scary, washing over me until I feel like I can’t get a full breath in between them. I can already feel myself grieving the loss of who he was. Grieving where this is all headed.

This house is so big. I don’t know how long we’ll last here. But selling it sounds impossible. Now I’m terrified to consider leaving. I know this isn’t the time to make any big decisions, I realize that. I just can’t absorb any of this. I’ve reached my saturation point. I’ve got to get more quality calories inside me. I don’t know how. But I must. I’m just so tired of being so sad.

I can’t handle another four years of this administration. Everyone is so focused on the executive branch. But what we really need to worry about is getting that evil Mitch out of power, and the rest of the traitors. If that doesn’t happen, it doesn’t matter who is in oval office.

I guess that will be the angle. Vote to keep me around? Use the #savemylife hashtag again. It all sounds so hard. I don’t want to do any of it. I want to find a cool place on the coast or north in the islands, and be a hippie off the grid so bad. Pretend all of this isn’t happening, like so many others are doing.

The kids.

So I keep at it.

I was hoping that writing in here would make me sleepy. I want to read my corpse book too. I rarely read entire books anymore. I walk by the library (which is where that girl stopped her car as if she was going to take me on, so adorable, so little survival skills in this bubble, though something made her keep driving so maybe she has some decent ones after all, I wonder about people who intentionally antagonize me now, I’m like what is going on with you that you’d irritate a hungry, sick lady?) and sometimes go in and check out books. I did this recently and checked out a chick lit book. Something I rarely read, even in my old life.

If it’s a decent writer, I enjoy a fun brainless book. I’d often get one for the plane rides across country back when my computer was too heavy to carry, and the battery wouldn’t last the entire flight anyway. I had shitty PCs back then. I finally relented and got a Mac mostly because of the battery life and the lack of viruses.

How is this summer going to play out? It’s hard, sometimes, sensing some things and not having any idea about other things. I want to know! But that’s not how life works. Will he get sicker? Will he get better? Will it be fast? Will it be slow? Will I stay ok? Can I find a GI doctor that can tell me what’s going on? Can I add fish back into my diet? It’s so much work to get this food moved through my system…why doesn’t anyone know what the mottling on my stomach is? Why is it so hard to find a GI doctor that can help me?

How will my mom and I survive? My options are so limited. I want to see if I can figure out my own way of making a living. I want that so badly. I miss being a real working person every single day. I miss putting on work clothes. I miss being in an office. I know so many people dream of not working.

I’ve never been one of them. I LOVE it. It makes me feel alive. I should take a nap. I’m finally feeling sleepy.

I hope I can do all this. I hope I can keep at this.

So much. So hard.

I have to tell people about the 7/7 open house for my dad. Yes, his birthday is 7/7 and mine is 9/9.

Just bad luck.

In a system rigged against the medically fragile. And so many others.

I still can’t believe they dumped me into a wheelchair so quickly on Thursday and left off my clave. I told the pulmonary doctor and she was aghast.

So wrong. So much of it is so wrong.

Sleepy finally. Good night.

Much love,

Jules