I’m getting nervous. I can’t tell if I’m having so much trouble with my brain due to nutrient deficiencies or from the stress of watching my dad go downhill so fast, a combination, or what.
I’ve ALWAYS had my brain, all these years, even when my body didn’t work so well, I had this brain of mine to navigate it. I’m SO glad I have my crew that’s helping with driving. I’m going to make an ask for people to help me with food, because I just don’t have the bandwidth.
I’m kind of freaking out about all the stuff I’ve been revealing in here. I’m kind of freaking out all the likes on Instagram, and being a “spokesperson” for Lynch Syndrome. I’m kind of freaking out that I can see my dad’s skeleton….
Yep. I could see all his vertebrae as he ate his dinner last night. Or tried to. It hurts to swallow now. I won’t even bother listing all the things he has going on. FUUUUUUCCKCKCKCKK. I think it may be time to shift gears. I just want him comfortable! I got him some chocolates from the pot store last night, he was open to it! He feels like such shit, because obviously, everything is breaking down.
My dad might have tried, but maybe he would have gone with chemo if he’d known the full risk of what he was about to undergo.
I’m worried I’m being weird. I’m worried I’m being arrogant. I’m worried I’m saying things that I wouldn’t normally say. But I don’t know if it’s because I’m under so much stress and my diet is so whacked.
Or if this is the new me.
I’m sure it’s a combination of both.
I think about how so many comic book series start with the main character holding a loved one who died.
And how it changes them.
it’s no joke. I can feel this…version of me that can’t give a fuck anymore. I don’t know. I don’t know anything. I’m trying to plan one or two things with friends each week to keep my life from being a 24/7 Medical Hell. A little socializing goes a long way for my mental health.
But the rest? It’s appointments, and trying to figure out how to work with friends to create some recipes that will get me the nutrients I need. I meet with the registered dietitian on Friday and will have a lot more information after that to work with the doctors. I’ve got to keep getting those expensive IV bags for now, I don’t know what else to do.
I’m SURE the stress is getting to me.
I can’t believe this is happening so fast to my super strong dad.
If he can’t make it…it’s so hard on me to watch this unfold, and have to worry about my future, and how we will run this house without him.
I’ve got to consider having someone move into the room at the end of the hall to help. In exchange for rent. I don’t know what else to do. I can barely get done what I need to get done. And maybe that will change, but what happens when I’m grieving? How well will my brain work then? How do I do this on fucking 800 calories per day? Below that or something like that is considered starvation.
I look at the photo I shared on Instagram and the fucking paper grocery bag is bigger than me. I think I look ok, because I’ve always gained and lost in proportion. I’ve never been someone that’s had only one area expand. This was good when I was heavier! It has fooled me over the years though. Like a lot of people, I often didn’t even notice when I gained some weight - again I’m very small so even 5-8 pounds can be a size or two increase - until I see photos.
It’s the same the other direction.
I almost put the canned food lids in the toilet instead of the garbage. I’m forgetful. I can’t think clearly. I’ve noticed my executive function is very impaired. Something that’s always been a strength for me. That’s the part of the brain that oversees planning and time management. A lot of adolescent kids struggle with that piece. They need help learning how to manage their calendar and figure out how to create study plans, things like that.
That’s my WHEELHOUSE. That’s how I got one kid out of a pickle this winter. It’s often not the subject matter - though that can impede a child’s learning for sure - it’s often HOW they are learning. How the information is relayed, and IF they have the skills to learn it on their OWN. I literally studied with this kid to model it, and shared a whole bunch of different study tip styles. I didn’t know what else to do!
Thank goodness it worked, but how do I manage my own life when one of my strongest traits is so impaired? If I can’t see the big picture, or decide which doctor to prioritize, how can I do ANY of this? I think I will write to my new primary doctor with some of my more recent theories and let her know I’m struggling to see the big picture or what to do next.
Fancy that, having an excellent doctor be able to help with managing my case.
The only good thing that’s coming out of this is that I’m learning how to rely on people more. Good people. I just can’t believe it, it’s just so…bizarre. I emailed some people in my family after I got a complaint that they didn’t know how to help me. I said, ok I’m learning how to ask better. Maybe I already shared this? I’m so fuzzy. I slept all day yesterday and didn’t eat eggs. Next day is always rough on me.
What is wrong with our culture? That we ignore the dying? How fucked up is that? Why are we so so afraid of it?
I’m reading that Corpse book - YES I actually did start it and love it so far, I find I can only read short bits of books these days, I used to be able to plow through entire novels, and even non-fiction so quickly - not anymore. She said that so many people don’t want to think about THEMSELVES as possibly getting sick one day or dying even though really, in some capacity, both are inevitable. My Papu Sol (my dad’s dad) is the only person I know that literally died of nothing, just keeled over.
He still died though.
How do we get people to feel more comfortable around this? Fortunately, my crew is already on the broth thing. My mom helps a lot with the broth so I want to take some of that onus off her, and I need some more variety! Also, if a few people drop it off here and there, I’ll end up with a wider variety of nutrients. I’m stuck in a rut with my food.
Am I being weird? Have I changed so much? I can’t even evaluate things so well. It’s hell, pure hell watching my dad get so weak. You layer in the fact that he’s been one of my caretakers and has the same condition….
It’s all too fast! Much too fast! I don’t think his friends even understand how fast it’s all happening. My mom and I are the ones watching it unfold, watching him struggle to eat. He DID drink those little protein drinks. But mostly because he is having trouble swallowing food.
That is not good. As I’ve been telling people, not eating…is a sign of end of life.
The sun shines. People go on their vacations. Life carries on. And I’m trapped in this nightmare. Piled on top of my own personal nightmare, I’m not even sure how I’m getting through each day. I have no idea how I recorded that podcast on Consent with Tabbitha - I know she is SUCH a strong speaker and so incredibly smart that she’d make sure it turned out well. I keep messing things up with little administrative tasks. I have these panic attacks where I send a message to my editor and say: Omg I don’t know I don’t know if what I said was good or going to offend anyone, I need to listen it over, and then it gets delayed, because I can’t think clearly. Ends up, it was fine. But I start to fishbowl and I can’t make a decision as to whether it’s ready for the world.
I often have ideas for posts or even entire podcasts, that I know just aren’t right, I can FEEL that they aren’t meant to be published. When I record videos, I can always feel towards the end, when I’ve nailed it.
I’m having trouble accessing that sense right now.
I want to at least make sure I’m not offending anyone. I don’t care if I say something stupid about myself or whatever. I just don’t want to hurt anyone. I’m supposed to go to a new party with friends on Saturday, but I have an appointment with the dietitian on Friday, which normally I rest on that day. Can I do it? Will I have to cancel? Ugh. I need in-person hang outs, and support from friends so badly now, but my bandwidth just keeps on shrinking.
I’m eating coconut ice cream and cream cheese, and whatever else isn’t those shit calories, as much as possible because watching my dad is freaking me out. I’ve got to maintain my weight. I look super fit right now but there isn’t much adipose tissue. As I taught my nutrition students, adipose tissue (fat) has a purpose! It’s a protective layer for our organs and it’s there in case of a medical problem or famine! It’s crucial for survival.
But of course. I have to deal with all this unconscious bias. Seriously, sometimes I think there are some women who are jealous of my figure…I can’t say the rest, but believe me, please believe me, please, that this is definitely a component of what’s going on.
What if I can’t handle any of this? What if my mind breaks down for good? What if my body breaks down for good? What if I follow my dad? What if I can’t handle him passing? What if I just lose my shit for good? What if I don’t have the right care around me to keep me going? What if my family keeps pretending I’m not as sick as I am? What if I can’t handle ANY of it?
There is such a layer of protection for me to share so much of my life on the Internet. It doesn’t only allow me to control my own narrative and remove the leverage of anyone wanting to gossip (well you can gossip, but I beat you to it and already announced my intersection meltdown myself so…good luck with that…how did I never notice how cruel the able-bodied world is? How quick people are to relish in another’s pain and struggle? Ugh so awful how much people love to jump on someone’s bad news…so gross), it also gives me a place to share the what’s happening in the medical world, and ensure that if need be, I can have a crew advocating for me.
Do I have to truly lose my old mind in order to allow the new one full agency? Is that how this works? Is that how enlightenment works? If I feel like I could just let go and lean into whatever is happening, I’d feel a lot better. It doesn’t help that my last counseling session seemed to have triggered my therapist regarding her own loss of a child (someone my age) this past year.
I can’t handle that. I can’t wait for my appointment with the trauma therapist on Wednesday. I need some clarity. It’s so hard to manage working through this, and then also worrying about my nutrition appointment and whether I’m taking in enough calories. I have my base intake covered, but it’s not the awesomest of calories. If only I could eat kale salad again! And beans! And soup! Ohhhhhh if only. I could fix this even with a limited diet. I could fix so much of this if I could eat right and think straight.
Then I think: well, if I survive this and then share my experience, people will listen. I’ll listen to someone that’s gone through suicidal thoughts and then explaining what worked. The blond chick with the $800 Jimmy Choo shoes lecturing from her high perch in the world? Nope. Not gonna listen.
So I think maybe I have to go through this Hell in order to teach later? This is the only thing that keeps me from totally losing my faith in all of humanity. I get that so much of it APPEARS as though it’s been happening fast. But that’s a lot of why I came out hollering SO loud SO early. So that when things really got bad, people would be able to handle it in their psyche.
I don’t know if I CAN handle any of this in my psyche. Thank goodness I made that appointment with this therapist. I need some guidance. I need to figure out some shit. I feel like I’m losing myself, and unsure whether that’s ok and part of the growing process, or if that’s a bad bad sign.
I am so grateful for my rocks, they keep me tethered to reality, to the regular world. I can’t do this without them. The people who disappear, I must let go (it’s taken all of my willpower to not text my friend I was supposed to see last weekend and find out what the hell is going on, she has her own agency and is fully capable of contacting me to tell me. Am I too much of a weirdo? Does death frighten people too much? Did someone lose a close friend that I don’t know about and is feeling triggered? Did I say or do something offensive? I can’t help it! I’m codependent! I try not to go down that rabbit hole, but I do, then the newer part of me is like: Julie, you simply don’t have the bandwidth to worry about that shit, or whatever the deal is, either the person will show back up again or the friendship is over, deal with it, you’ve got MUCH bigger fish to fry, but it’s a work in progress, I really really enjoyed her company), I don’t feel like I have a choice.
My bandwidth, omg, it’s so narrow these days. I have my drivers now assigned to remind me of things, to check in with a doctor about something. Another friend said she will help with phone calls. What I really need is someone to help with correspondence. I totally trust this friend - she also worked in customer service for years and she is home with a kid so she is antsy for a little work so she is fine with it. But it’s hard to give up that kind of control! Have someone help with email. I never had any assistants do that over the years. I always did my own correspondence. But I’m having to give it out all now.
Maybe I really should look for someone to live here for at least a little while to make sure I don’t end up flushing something random down the toilet, then it gets plugged. I can’t remember if I’ve washed my hair (ok, i can never remember, there is so little of it, I don’t have to do it often, but usually I have SOME idea of the last time I washed it). YES IT’S THAT BAD.
I thought chemo brain was bad…that was just like living in a fog. The good thing though was that I didn’t even know what I was doing or not doing.
This is hell because it’s all happening so slowly, that I feel like I’m holding onto these ropes tethered regular world, and I can’t keep my grip. I can’t remember if I’m doing what needs to be done, or if I’m acting strange. I ask people and they’re say: Julie what are you talking about? You’re totally fine.
I mean, I’ve always been very chatty, and a little quirky so I guess what I’m feeling isn’t translating out into the world. And I’m maintaining my text conversations with new friends. Thank goodness these really cool people keep showing up, so organized, and reliable. I can’t handle anything else. I don’t even know if it’s the worst. How I relate to people whose lives are going pretty well, and stay true to myself? The only thing I’m finding is that they have to be super compassionate and willing to say: it’s ok, Julie, you don’t have to text back right away. It’s ok if you’re rambling about your appointment, or sharing your fears. It’s all ok. You’re going through some major shit.
Then I feel like I can breathe again. Ok, I’m being heard. Ok, I’m not losing my mind, I’m just under an incredible amount of stress in a body that doesn’t work right and surrounded by people in Denialitis (that’s what I’m nicknaming it).
I worry. I really do. About the mental health of people who are in denial. If I go into hospice, I’m really worried they’re going to be LIKE WHAHHHAAAAA you were supposed to be just looking to get a bunch of followers and wanting to be popular on the Internet you weren’t supposed to actually DIE - which is what I think is happening around my dad. We thought you were exaggerating Julie! Being dramatic!
I don’t joke about Death. Ever.
If I announce on the Internet where all the kids can hear that I’m dying, then I’m fucking scared as shit and something really, really bad is happening.
Fuck. I don’t know how to explain on Facebook that not believing disabled people about their experience (“your’e a victim!” I still can’t believe that person said that.) I said what I needed and no response, so again, not on me. I’m doing my due diligence. That’s the best part of working through my shit and learning better communication skills, it allows me to separate my responsibility from the other person. NOT MY PROBLEM if you choose to be that way after I asked for specific help. IT IS SUPER ABLEIST. Most people don’t even know what that word means! I didn’t either! Until not that long ago.
But dang, I’m learning it now.
Until people get comfortable around all that, it’s hell on me, and so many others. Well if we are still alive! So many don’t want to consider that their luxurious life is happening at the expense of others lower down on the food chain….
Soon. I guess nobody will be able to deny it, things are going to get way way worse, before they get better. And they won’t get better until the majority wakes up and pitches in. Even small things can all add up.
And about the followers thing. What if I grow myself even a little bit and I freak out? I mean, I’m not that big right now. I like it that way. I like this level. I can say stupid shit on Twitter and nobody yells at me. I may say something weird on my podcast, nobody really knows or cares.
I can’t stand the idea of having so many eyeballs on me. Especially now when I can’t even think straight! But then I think, the whole world is falling apart Julie, do you REALLY think anyone is going to be paying that close attention to YOU? I mean, I can’t help it, I always think big. But the reality is that it would still take awhile to grow listeners and maybe it will happen slowly enough that my brain can handle it? I’m actually terrified now of getting an article written nationally or anything that would make me blow up faster than I’m ready.
Fuck. But what choice do I have? My mom is all chill because her future is set.
But I don’t have much. I have no deed in my name. I have no guarantees except for a few verbal ones that I will be taken care of. They don’t understand how scary it is to be in this position. I used to be able to say whatever, I’ll just go get a job. I’ll do lots of different jobs, I’m not one of those snobby people about it. I’ll become a teacher, or a server, or cater or whatever, on my feet, if I could. I would be a budtender! I would even be a nanny now if I could. Shit, the pay is so good, and if the kids are good and the parents are cool, it’s fine. I even babysat for extra cash when I was the DIRECTOR of a culinary arts program in New York. I liked the family so I said yes.
Well, I did have ONE story which is a good one. It involves the Hamptons and a play with Alan Alda. Oh that little girl must be in high school by now. Wow where does the time go?
The oldest left today. He is headed out of the country and I’m trying not to freak the fuck out. I have to be calm. I think one of the WORST things that nobody talks about regarding the college bribery scandal is how those kids are going to be scarred for life.
If your own parents don’t believe in you, then how the hell do you get through life? That’s the biggest thing I’ve seen as a teacher over the years, this strange belief that making life easier for kids is good for them. Now, I don’t think we should grow up the way we did in the 70s, fending for ourselves (being the first latch key kids obviously wasn’t the greatest thing ever, hence the pendulum swinging so hard the other way).
I kept wanting to make sure he had a bunch of things for the trip. He is going to a relatively unstable area of the world. He’ll be with a group, but he’s never been at anything other than a resort! I’ve been getting more pushback than I ever had. I got it, I got it. Which is a compliment, I know. So I have to be chill. That imparts a message that I believe he has it handled. As long as he is safe overall, some sunburns and massive mosquito bites will be the lesson. Oh, how we don’t like to watch them suffer! I do get wanting to protect them from every single thing including even bug bites. But it’s more important the he feel a sense of agency - my new word I got from Tabbitha - and feels like he has ownership of the process of packing and traveling. As long as he comes back in one piece without any trauma or major snafus, the rest just doesn’t matter. They have to feel like they can be an adult in the world, and these kinds of trips are the perfect way for them to gain that competence and confidence and adult skills, while still safe.
I read somewhere that having a kid feels like having your heart walking around in someone else. I’m not a parent, but I can feel that way. He’ll be ok. I sense that. That’s partly how I manage. I told him to mentally prepare that his Papu might not be around when he gets back, I said you have to at least have that as a possibility in your brain so you’re not caught off guard.
I don’t think most people say things like that to young people. But what’s better? That he hears of it via Whatsapp on another continent and feels blindsided? I’m always honest so this is nothing new. Fuck trying not to write about this stuff lest I get yelled at for speaking of such things while not being a parent. Oh….I gotta get it out at least. Decide what to do with it later. That’s all I can manage.
How do I keep watching my dad get weaker and weaker? It makes me want to get stronger. I see why he was so obsessed with fitness now. I’m like counter push ups, stretches, stay strong, this is something I can control, I can control this, I can lift my weights, I can do this, nobody can take this away in the hospital….
Ok, I feel a little better. Dang, my dad wasn’t even that sick when I started in here. Thank goodness I started writing in here. I almost didn’t write in here today. Obviously had a lot to say! Thank goodness for my writing, my peeps that are so steady and can hold the ropes attached me while I flail around in my tornado.
YOU GOT ME RIGHT? YOU GOT ME RIGHT? YOU WON’T LET ME BLOW AWAY INTO THE SKY RIGHT?
This is how I feel, like I could just blow away mentally and physically.
I can do this. I can do this. I used to write that when I was writing during chemo etc.
I don’t know how the fuck I AM doing this. Routine is so important. This is why I get worried about making changes, moving, things like that. I can’t make any significant changes any time soon, that’s for sure. Can’t move out of this house, I won’t know where anything is for starters!! I just need safety. And people who make me feel safe. Too much scary shit happening.
How did humans deal with war and famine for so many years? Is that what we’re carrying around? All this trauma from our ancestors (they did actual studies that showed generational trauma in DNA or something like that - can’t Google).
Ok, gotta eat something. Time for some eggs. They are very “grounding” energetically. Based in Asian modalities. My cooking teacher - who I only realized later is an improv queen here in Seattle, I knew she was into theater but I didn’t realize she was part of the company I’ve been going to, one of the teachers was in awe that I worked with her, I was like hell she inspired my entire career, she is amazing like that - used to give her daughter salty foods and things like eggs when the daughter came home from birthday parties where she ate a bunch of sugar. The eggs are contractive which help counter the sugar which is expansive and make them hyper, etc.
I saw the daughter a couple of years for the first time in like I don’t know, nearly 20 years. She is a very lovely well adjusted twenty-something so I’ll take Cynthia’s advice (I highly recommend her cookbook Cooking for the Whole Family for my three readers).
Eggs. Salt, broth. Yes. I need it. Grounding. I used to be the one that grounded other people. I was the one who was the steady one.
Now, I’m the unreliable artist type. So weird to switch that around. I have no capacity to take care of a flaky person. No way. Not anymore.
Salt, eggs. yes. I will feed myself that will help a lot! I’m sure! I did eat a LOT last night even though I didn’t do my routine! Avocado, tons of dressing, broth, coconut ice cream, all my concoctions, and even cream cheese. I’m really trying here! I’m so nervous certain people keep saying: just eat something. Oh I’ll get right on that.