Hi Hi Y’all,
WE ARE UP TO 90 CHAPTERS!
Hi Hi Y’all,
I know more and more I talk about chronic illness. It’s not meant to just be a purge, a kvetch or a notice for recognition. Lately, my flare up have just been getting worse and longer. All the advice doctors gave and the awkward hard to explain moments just seem worse. More then ever, I am just tired. So very tired…
A friend of mine is coming up to visit me in April and I am so excited to have someone see where I go to University and be an understanding friend. I had been debating when ( and more importantly) where to get a back tattoo I have always wanted.
When I was a kid I was obsessed with Yakuza movies, samurai movies and ronin movies. I loved the traditional colorful tattoos on them and the values that seemed to come with them. As I got older, learned more about what it meant and how it was perceived I didn’t want such a large piece anymore. For awhile, I thought about abandoning the idea completely.
Then I got my diagnosis and I started to reconsider. What eventually solidified the desire to get the tattoo was this increasing problems. My drugs are increasing and surgeries that seemed far off seem sooner and sooner. More and more I feel like I am missing out and that I’ll miss out on things even more in the future. Weighed down by everything around me and having it all be unseen is taking a bigger toll on me. I can do less then I used to at the moment and no one really sees it or understands it. More and more I have to come to terms with being seen by the average person as a ‘disappointment’.
It’s these things that make me stop caring about some of the things I used to. If I feel like life is short and changing so much for me I have to at least do the things I enjoy? A giant back tattoo or some crazy visual representation of all my problems probably won’t do much for me, but that doesn’t mean I can’t stick to aesthetic and feel as if I did something to show it.
My back has two curves and a tiny hump on my neck. At the top of my spine there are signs of bones thinning and possibly going to fade away. As you got to the bottom of my spine fusing has started, my hips are out of place and my legs are now two different lengths. None of this can be seen or understood unless I give up and say I want to walk around like Quasimodo so people notice me. That is always going to be the reality of my back. Anything from now on won’t be seen.
I like small minuscule and thin lined tattoos. Normally, I don’t want color and just want simple black. I’ve known since I was small I would want tattoos that represented ideas that meant a lot to me in life. Knowing this it isn’t hard for me to know what sort of tattoo I’d get on my back.
At the top of my neck, I would want in thin black lines Vegvisir. Vegvisir is one of the most popular Nordic charms. It wishes for the person to never lose their way in storm and bad weather even if the path is unknown. I don’t think there is anything more symbolic of everything going on then that. However, there is one more reason. My great grandma’s mother was a Swedish Orphan. She had come to the U.K. and met a Spanish Jew. They married and moved to the U.S. Apparently, unlike her husband and the efforts she put into now being Jewish and raising Jewish kids she never gave up her belief system. She was very very very Christian. I’m talking crosses and bloody Jesus pictures everywhere sort of Christian. Yet, there was one thing that my great grandma remembered seeing even when she didn’t know the name of it until I told her: Vegvisir. In a legacy where only food and some old myths managed to be passed down, my great grandma could vaguely in her dying times remember seeing Vegvisir as a child. Now how could I argue with that? Jewish or not, my great grandma read me Nordic myths as I was growing up, joked how if it was true Odin was 100% cooler than Zeus, and how we were meant to be tough because it was just in our blood. I’m traveling rough waters right now and maybe that means it isn’t just about being Jewish, but remembering all beliefs that helped create me.
Underneath Vegvisir is the real highlight though. Running in small thin lines will be the I Ching and its 64 changes. For a person of my aesthetic and weirdness (and love for Asian culture) what is better then 64 line patterns each symbolizing a different part of early understanding and divination? Nothing. Seriously, nothing at all. My life is certainly one of change and phases, of fortunes and dis-fortunes, and of joy and sadness. These line patterns will follow the crooked path my spine takes all the way to my tailbone. Maybe it will seem funny to some, but to me it’s a little part of the truth. And when these inevitable surgeries come, the scars appear on my back and the fight through new types of pain begins, I have marks of it all. Little lines that exist as part of scars and as part of the journey.
Going through all of this has taught me that living behind a mask is no longer something I’ll really be good at again. My body demands of me the truth. It demands that I grow past the angry cynical jaded girl I was when I was young and try to find the joy of life. It tells me that it will not tolerate lies and will only tolerate truth.
Don’t I have to do it then?
P.S. Odin really is way better. Norse > Greek everyday <3
When you successfully avoid all the traps a boy from the past throws out at you. The bait-switch, the pitfall, the recollection, the poke and prod, the tease…. I AVOIDED THEM ALL MOTHER FUCKER. Instead, I got a serious of apologies.
Take that… Take that to your record of past experiences you need to learn from.
I OWNED YOU SON.
Every Jewish girl, boy, appreciator has normally one constant in their lives: a good bagel place that knows them since they were children. So naturally, I do as well. A place that stockpiles the good tofu cream cheese and nova. Although, if we are being honest they need to improve their sturgeon game (seriously, it is so dry).
Today, though, in a place where everyone knows everyone, I was embarrassed. With my family it is always the same conversation. My grandfather tells me all the natural remedies and the power of Tumeric and says that will solve everything. It goes on for twenty minutes, as I get lectured on my dependency on medication and how I shouldn’t do my Humera paperwork, because it has so many side effects. I eventually get frustrated with him, because let’s face my entire family ‘cares’ a lot about my illness and has down all the research. You inability to even name what I have, or generally know my health concerns is a great example.
Still, the embarrassment wasn’t coming from me having to tell my grandfather, “Enough. It’s an auto-immune disease, dad. I don’t get to just take Turmeric every night and I will be cured. Besides, I already do take Turmeric every night!”, it came from walking over to my grandmother afterwards. Her words,” Stop it. That’s all you ever talk about. You and your list of problems. I’m tired, or I hurt. We know. You sound like no vaccine people. Natural cures do work sometimes…” You know why you guys can’t name what I have or my symptoms, MAYBE IT IS BECAUSE SINCE I FIRST STARTED HAVING HEALTH PROBLEMS YOU NEVER LET ME FINISH THE LIST OF ISSUES THAT NEEDED TO BE ADDRESSED BECAUSE THAT WAS CALLED COMPLAINING AND DEPRESSION TO YOU. The immediate answer every time can’t be a cut off, positive story, and now let me inspire motivation. Just acknowledge that waking up feeling like your body is on fire, SUCKS ASS. Acknowledge that I try so hard to keep with your beliefs and not be my mother and avoid relying on medication. I avoid pain killers, nerve-blockers, I even try to maintain sleep without sleeping pills, so I am succeeding on my own strength. Why you got to constantly embarrass me like that?
The woman at the cash register even felt like she needed to say something. Her sister has Lupus, so she said she sort of understood what I was going through. I thanked her, said her sister was brave and lucky to have her, got a free coffee, and a good luck from her. You see. Normal way to engage in conversation. Normal actions. No embarrassment.
I really hate that I write about this stuff so much lately. It’s like all the time my writing is about this and all I want to do is be writing about other things…But this is a part of my life now…a big part…a part I’m struggling with, because it affects everything around me and can change me so much. I can’t predict how I’ll be the next day. I can only hope my pre-planning works out. Fevers out of nowhere, forgetting things a lot one day, not being able to concentrate because your brain can literally not follow a sentence, and the constant check ins to monitor your medication or general health is my new life. It’s uncharted rough waters. You don’t know how to stop you from waking up one day and not being able to lift your knee up more than a few inches, or it being a day where you can’t leave your bed for awhile because you are stuck in a position you don’t remember laying in.
You are just in everyone else’s eyes weak and depressed. Even if you know you aren’t depressed, because of how you can see yourself struggling. I mean, I struggle to try and live through this chaotic ups and downs and even try to be strong, to be happy, to recognize I can’t carry the luggage from my past, and that I have to accept things because my body has no other option at this point. Still, I can’t argue it does make me mentally tired. Explaining these things over and over and not getting the results I want, because I myself can’t decide what I want to hear…I can’t even be a good friend sometimes, because I can’t handle another person.
It weighs heavily on my mind how when this all started I didn’t listen to my gut feelings about this all and got to the point I was at. How I can’t lose the weight I gained in any quick manner, because I can’t do the cardio that would burn those calories, and even if I did I need to dedicate time to body weight training sessions to maintain mobility and regain atrophied muscles… It eats away at me SO MUCH.
There’s a reason I am at a bagel place for my cheat day. I need to be able to eat a proper bagel more then every three to four months. I am a Jewish girl. OKAY. We live on this stuff. It is part of our culture. There is even a Yiddish saying about lacking bagels, “Lign in drerd un bakn beygl!” It directly means, May you lie in the ground and bake bagels… In other words, you should burn in hell and be depraved of bagels you are being forced to create. Bagels are serious man….
So can you at least not embarrass me at our bagel joint? Our last name even means bagel…..It should be sacred ground.
I think there is a part of me that will never grow up. BECAUSE THE NEWS OF AN OFFICIAL CONTINUATION OF NARUTO THROUGH HIS CHILDRENS’ GENERATION HAS ME LIKE A SQUIRREL ON CRACK COCAINE. I have gone through the steps of re-crying over Neji’s death, re-igniting my love for Naruhina, marathoned shippuden/the last/Boruto and prepared myself for the apparent sci-fi twist of the new series. I am so excited. I need spring 2016 to just come so I can keep reading. I am dying to see the character development of Himawari, a possible relationship between Himawari and Inojin, HER HAVING THE FOX, the expected relationship of Boruto and Sarada, their character developments and in general just to see how badass all the kids will be. I can’t wait to see how the kids reflect both parents and the relationships the other villages have with each other now.
I AM JUST SO EXCITED AND HYPER AND HAPPY,