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[feistymichelle]

A little something I wrote. In 2016.  About 1991. 

[feistymichelle]

Happy Birthday, Mommy. And Feliz Día de los Muertos. I wonder if, one day, my kid will get a tattoo with December 21st, and say, “Happy birthday, mommy. And happy solstice.”

Life is weird. Death is weirder. I was 43 when my brain mostly died. My mother was 43 when her brain was murdered by a brain tumor. I was 17.

2.5 years ago I was given 2-3 years of life left. So, when I die, my son will be within months of the same age as I was when my mother died. I was 17. My kid is going to be 17 in 2 months. Life. Death. Kids. Brains. Memories. I guess that this must be the place.

[feistymichelle]

Death Is Democratic

Although my mother was not catholic, she was a religious person. She loved Jesus. A lot. A She was also a mother who lost her daughter, Robin, when when my sister was about six months old.

Of course, my mother never recovered from my sister's death. My mother went through life with something dead inside her. We rarely spoke of my sister. The only time my mother ever remembered my older sister in a way that wasn't heartbreaking was on November 1st. Every year my mother would light a candle on November 1st, Día de los Angelitos. The candle was gone by the next morning, which is my brother's birthday. Mother's birthday was November 2nd. It was a tiny something, but it was something.

Dia de los Angelitos (Day of the little angels) starts the holiday at midnight on Nov 1st, where the spirits of all deceased children are believed to be reunited with their families for 24 hours. Families construct an altar, known as an ofrenda, with the departed child’s favorite snacks, candies, toys, and photographs to encourage a visit from their departed children. The names of the departed children will often be written on a sugar skull.

Halloween wasn't a holiday in which my brother and I were allowed to take part. It was evil. It was satanic. If we dressed up we'd go to hell. We couldn't eat Halloween candy at school. When trick-or-treaters came around at night our house was dark and my brother and I were hiding because we couldn't hand out candy. It sucked. But. My mom made it a tad better because the day after Halloween is my brother's birthday, and the next day was her birthday, and it was a time we could remember my sister.

Día de los Muertos is chiefly a day of remembrance and a celebration of the life of the deceased. Generally, an altar, or ofrenda, is made either in a home or graveyard. This is not an altar at which one worships, but rather one that is intended to welcome the soul of the deceased to visit. The flower most used on an ofrenda is the Mexican marigold called cempasúchil. The bright petals and strong scent are said to attract the soul of the deceased to the ofrenda. Another common sight on an ofrenda are sugar skulls and pan de muerto (bread of the dead), which is a sweet flavored bread. Photos, toys, mementos, water, alcohol, and other food items are also common ofrenda items.

My mommy died when I was 17 (I always called her mommy), which meant I had to go out on my own right away. For years I was totally unable to process her death in a way that was even a little bit healthy. But then I discovered something neat.

I was an undergrad at San Jose State, and I was working on obtaining my elementary teaching credential. While I was doing my student teaching, there was a teacher shortage so severe in California that I was hired full time, while I was an undergraduate, to teach second grade.

I learned a lot of things. But what stays with me, to this day, is how the community in which I was immersed celebrated the memories of those they'd lost. This hadn't been an option for me, not even a consideration. I hadn't done anything at all to actually process the death of my mother. I'd never been to her grave-I still haven't.

To this day, the East Side Union School District is incredibly diverse and cultured, and while I was teaching I learned so much.

Including all about Dia de los Muertos and All Souls Day, November, 2nd, which is also my mother's birthday.

That October, something started happening. For the first time since July 14th, 1990-the day my mommy died-I could feel something in my heart. It was loss and sadness and hurt. But it was also happiness and family and my mom's smile. Things I'd forgotten. The gold specks in her Irish hazel eyes. The way she'd tell me I was pretty. The way she knew whenever something was wrong with me. The way she would tell me to pray every night and ask Jesus to forgive my sins so if I died in my sleep I wouldn't go to hell. (Btw, mom--THANKS FOR THAT! I still pray every fucking night. We're going to have a conversation about that pretty soon!)

This is a picture I snapped of the tiny ofrendas I made the year Marc died. Darlene sent me the candle. This year my alter will have a candle for Darlene. Death is democratic. No matter your colour or creed, your wealth or your poverty, everyone ends up as a skull in the end.

This is going to be my last alter. And my alter is going to have two new additions. Darlene, B.J.: shenanigans shall soon ensue. And they will be heavenly.

Epilogue:

My brother is going to be a dad, and my nice is due on...wait for it...October 31st. :)

Backstory

[feistymichelle]

Take a bite of peach.

In July, 2019, I was told I need a liver transplant. I have hemochromatosis, which is a genetic disorder that causes a body to store too much iron. The very short story is that I have too much iron in my liver (and my heart, pancreas, blood, and what-used-to-be-my-gall-bladder) so my liver is dying, and so am I. Thanks, genetics!

Aside from the lovely physiological ways GH destroys an existence, all that iron really, really, really fucks up the brain. This is because of ammonia intoxication. Hepatic encephalopathy is a brain disorder that develops in some individuals with liver disease. This is why I was in the hospital for 10 days in 2019, when I was informed I need a new liver. The worst part about knowing I'm going to die is knowing exactly how I'm going to die, which is from ammonia intoxication, which causes hepatic encephalopathy. This is a shitty way to die, which I know because I've already almost died from it. (One day I'm going to go back and rewrite this paragraph but it's a really, really difficult collection of thoughts and words and sentences to construct.)

I'm not in the market for a new liver. I don't have health insurance. Also, there's no way I'm going into major surgery again. I was also told I needed to see an oncologist for my pancreas and a hematologist for my defective blood. However, doctors like to get paid, so. Now that I am into the third year of the 2-3 year expectancy of life thing, I've decided to try and do a few small things that might help someone out there in the overly-iron-infused void.

Although hemochromatosis isn't an uncommon genetic disorder, in the U.S. hemochromatosis isn't something for which we routinely test, so it is considered rare. I was in my early 40s when I discovered I have GH. But now my son, and my niece, will be sure to be aware of this genetic defect so they can both be tested when they are youngish.

When discovered earlyish, the treatment for hemochromatosis is helpful for not just the patient. Donating blood is the core treatment for people with GH. And people with GH* are often able to donate blood that can be used by people who need blood. Win win!

I've created a website, creatively called Genetic Defect. My site is based on my experiences living and (literally) dying with GH. I have lots of links and resources and shit over there, so hop on over if you want to know more about genetic hemochromatosis. Meanwhile, here is a post-slurp photo of what is one of the few things I am, currently, able to taste, digest, and enjoy: b-b-b-ubbles. With, of course, some add ons of peach poppin' boba. :)

*Because of other health reasons I am unable to donate blood.

[feistymichelle]

She gonna teach me how to swim

In case you were wondering if it's possible to break a Breville Smart Tea Infuser just by standing next to it--wonder no more. C'est trēs possible.

While I was cleaning up tea, I heard a loud BEEEEEEEP and then the robo vac launched itself away from its dock, to cruise around my feet. Why? Je ne sais pas.

Meanwhile, every one of my reading lights has stopped illuminating words. Turns out being Iron Ma'am really does break electronics. C'est très amusant.

Social.  

Je suis un défaut génétique.

[feistymichelle]

Then the devil is six

I've always been overwhelmed and impressed by my strong, personal desire to do everything differently than how other people do their things. And that is why I only post my good selfies on instagram. I know it's not cool, and instagram is chock-full of only the ugliest photos of the ugliest people doing very ugly things--while using only the most brittle rays of sunlight to illuminate every zit, wrinkle, and nook--but I am not so brave.

I am blessed. I have naturally pale skin, which gets paler when I'm bleeding internally. HH can cause severe bleeding ulcers, and that blood loss causes very pale skin. Add a good filter and I can look downright ethereal.

Because of the whole I have no gall bladder/I do have a dying liver, I have HH (or, as they say in the UK, with much more education, care, resources, and medical support: GH), there are many foods I can no longer, successfully, consume. Such as:

Fat. No longer can I (successfully or comfortably) eat delicious, dripping, butter or oil or cream or etc., or:

Gluten, sugar, dairy, caffeine, salt, animal carcasses. Or:

Alcohol. I stopped drinking in 2019, when I started being medicated for cardiac hemochromatosis. Viola!

What I do mainline is lactulose, which is an ammonia reducer. People like me, the lucky ducks who are dying from liver failure due to genetics, die in a coma caused by hepatic encephalopathy, brought on by ammonia intoxication. For this reason, I was hospitalized in 2019, and told I need a liver transplant because I was being intoxicated by ammonia. I do not have the money to purchase a liver from a dead person, so I make do. I keep my liver clean as a whistle by consuming piles of lactulose.

Speaking of bathrooms, I drink gallons of water every day. I stay hydrated with loose herbal teas I brew, consisting of: milk thistle, dandelion, licorice root, turmeric and ginseng. And some seasonal treats, like Trader Joe's pumpkin tea. Because i crazy.

To summarize: I continue to exist from a nearly-vegan, low-fat, low-gluten, low-sugar, zero-processed, low-sodium, highly fibrous, supplement-rich, alcohol free, lotsa loose leaf tea, liquid b-vitamin diet. With a good filter, all these things can be conducive to looking pretty. And younger. And healthy.

However. I still, and increasingly more often, look like a bag of dirt. Every fucking night I literally fucking pray to Jesus Fucking Christ to forgive my sins and give me a few hours of sleep. Jesus is a deaf mother fucker. So, most of the time I'm puffy, pale, tired, jaundiced, and I am always in pain. Depression is an increasingly invasive part of my soul. So on the days when I have energy to get out of bed and I don't look like the bad things, I take photos of all the things around me, including, as I often see myself, me.

Speaking of iron overload, I have amazing hair! My body is dying, but my hair is growing like a gazillion healthy weeds. Yay for hair! Yay for herbs! Yay for...wait...what was I sayi...I'm suddenlyreally tired and sense is not making night night.

Epilogue

When I get to The Next Place, my home will be in a hilltop Italian bakery, where I will eat warm crostini, drizzled in olive oil, while floating in a crystal glass filled with the liquid of a cosmopolitan made with Beluga Noble Vodka and Provençal cranberries, crushed by the hands of angels. And everywhere will be my friends. And my son.

And God is seven.

[feistymichelle]

Hi! I'm Mr. Darcy and I'm a gentledog so I bring my Lady the foot of a duck in the morning. Au revoir!

[feistymichelle]

I've been going through my old journals, looking for early writing tidbits to put in my current work in progress. 89/90 sure was an eventful year. I got devirginized, saw my first porno, also saw Lynard Skynyrd, and I started driving. I passed my high school equivalency exam. And I went camping in Humboldt with my momma. The good times, they were had. ❤️

Iron Ma’am.

[feistymichelle]

Living with a heart defect does things like keep a girl up all night. So, last night, I decided to make some progress on this Day of the Dead cowl I've been wanting to knit up for the past couple of years. It'll match my Nov. 2nd tattoo. To be continued.

#dayofthedead

#diadelosmuertos

[feistymichelle]

Finger Banger

It's Monday. On Friday I cut my middle fucking fingernail--with, like, nail clippers--then I cut just that one nail again on Saturday, Sunday, Monday and this morning. C'est mardi.

This is how quickly my nails grow because I am, currently, residing in a body overloaded with iron. Yay. (My hair, however: c’est fabuleuse.)

Home.

[feistymichelle]

I felt like shit last night. And pretty extra shitty the past several nights. So, today, I was happy to have some energy so I could go outside and transplant some basil, which the fucking squirrels have been attacking. Of course, I sang Harder Better Faster to my herbs. And then I took pics! Because, harder, better, faster, dot dot dot.

Stronger.

#fuckinsquirrels

[feistymichelle]

This article describes an experience that is really similar to mine. Except, I live in the U.S. in TEXAS. I have zero access to health care. So. 

My story.

[feistymichelle]

[feistymichelle]

https://ello.co/feistymichelle

https://feistymichelle.wixsite.com/geneticdefect

[feistymichelle]

Something I wrote, in another life.

[feistymichelle]

And what brought you into the forest at all? 

I keep imagining the drive up skyline, to our house in the trees. I remember seeing the gorillas in the sanctuary in the trees, on the west side of skyline. I keep eating with jay and his family at that place up at the top...now I forget. I can see the mountains going out, out to the ocean on 84. That drive, we zipped that drive in so many cars. I remember looking at his hands, calmly holding the steering wheel in a way I knew I'd never master. Being calm. I was calm when I was with him. I knew that any choice I'd make in the future would include him. Somehow. He was brave. So smart. So opposite of everything that was me. Except we laughed at the same things. He made me laugh a lot. I am planning my trip to Prague. I am in the house in Woodside. I am scared and so excited. It's cold here, but it's frozen in Prague. Jay drove me to the airport and I left. The people in Prague are cold. Snow fell on dirty, icy payphones. That's when we still used wires. I wanted to share everything I saw with him. I wanted to order weird coffee with him. I wanted to hold his hand. A couple of weeks, later, I did. He arrived in the snow. No, just ice. In Vienna. Then, I was safe. I hadn't realized I wasn't previously safe. Not even when I was freezing, alone, in Budapest. And that was how we evolved. I never knew what I needed what was better until he showed me. Ten years later, five years after I delivered our son something went wrong I was sick. I didn't know I was sick. Other people did. "How did Jay not know?" It was easy to blame drinking. He mixed me a lot of drinks. I started mixing my own drinks. I mixed them when I was alone. We fought. But I trusted him. Jay would figure it all out he always did. What was he going to do? Not therapy, He continued to blame drinking, and it became easy for me to start drinking more. How did Jay not know? He filed for divorce so he could remarry. That was about a year after we separated. And then I didn't know him at all. I was alone. He blamed...drinking. How could Jay not know? I kept getting sicker. It  was easy. It was easy for Jay to throw me into the gutter, where I lived, for months, then years. I still cry. Every day. For a lot of reasons. Mostly I cry because I'd been so wrong. He took a gun crashed it against my skull and ordered me to trust him. And then I was in a gutter. Now, I have a semi known amount of time left to be alive. I tried to take control of that time frame. 232 pills. It didn't work. I need more parts. I have a few years left. Maybe. Hopefully, less.   I was 19. I was four years older than our son is now. I behaved for him. Because he wanted me to. I didn't care. I was happy. I made our life, which he continues to live, with his new wife. Who is not me. It's just my house. It's my kitchen. Those are my plants. I lived in the gutter. I was attacked in a park. I was writing about the park when I had a seizure. I died, briefly, on an operating table. How did Jay not know? I was rusting. The elements will do that. Science isn't easy for people born without algorithms.  I thought I had fought my way out of a story like this. Because I trusted him more than I'd knew I could ever have written

[feistymichelle]

...but I expect that they're all starving in the forest.

The thing that happen when the building blocks are shaken away is that all you see, from the top of the primary colored skyscraper, is the ground. The first floor. The ground floor. You see your first love. Your first loves. You/I see yourself/myself, in j.s truck, driving in the rain, at night, on 880, to drive up to tahoe. to meet lynn and larry an denise and tom in that casino. With that horrible buffet. I can't drink because I'm not of legal age. I am working at Phillips Brooks School, in Menlo Park, off of Sand Hill Road. I am taking classes at Foothill. Jay is still working at NASA Ames. I still own my home, my first home, on Lafayette Street. My mother had been gone 2.5 years. Jay's girlfriend, Sue, still has her stuff in their garage. Because of me. He's told me so many times that she was awful. His first and, thus far, only girlfriend. The only other person he's ever fucked. I was the second. I am special. I am safe. I am always in the passenger seat and I love it. I feel safe when j. drives. He drives me to see my grandmother in half moon bay. I am safe in the car. We drive to the hills, the Los Altos Hills, every sunday, to have dinner with his family. I'd never had family dinners. I'm so safe. So loved. We get married right there, in that house--outside. We--everyone--can see the bay. I am so happy. So safe. So safe so safe--

It's not safe up here.

From the sky, now, where it is scary and lonely and painful--I see the ground. I see empty space: heavy, humid air. All the blocks: blue, red, green, yellow--*take a bite of peach*--the blocks are gone and I don't know how I got here, where I am, in the sky. I like toasted sandwiches. I like them with a specific baguette, because it reminds me of--I don't know. Those blocks are gone.

https://feistymichelle.wixsite.com/geneticdefect

https://ello.co/feistymichelle