Dear 'Maggots'..

I read an interview once with Shawn "Clown" Crahan of Slipknot in passing. It popped up on my Facebook feed and I was intrigued by the promise of an explanation as to why he dubbed Slipknot fans "Maggots". In the very powerful and moving interview he gave, he said something that stuck with me.

"We’re not just a band, we’re a fucking culture–I know this. We have so many fans that I can’t even tell you because I would be incorrect. And we are one in the same, we are equal, we are together forever."

It's been a long time since my metalhead days—though I am definitely still a freak and anyone getting in the car with me knows they'd better bring some earplugs if they're not down with some heavy bass and metal voices—but the metal culture in general has always been a place where I felt at home, where I could connect. From something as simple as a nod to someone else wearing a band shirt to the absolute lifeline it provided me as a severely messed up teenager, there's an invisible string that connected me with every other lost soul on this planet who sought solace in the music. And so Clown's words certainly resonated with me—and more so now than ever.

About a year ago I had to start using a wheelchair on bad days or for anything requiring what my body feels is "excessive" walking, like going from my car into my classroom. My legs give out on me randomly, and I get dizzy/lightheaded, weak, and sometimes I fall. I have a feeding tube, but the feeds frequently make me sick and cause severe intestinal cramps--and even when they dont, my goal rate for my pump is a pipe dream, so I'm still not getting all the nutrition I need. I have a faulty autonomic system, which means my body has trouble regulating involuntary things like blood pressure, heart rate, and body temperature. I am nearly always nauseous and I am always in some level of pain. Some days I get by and some days I can't function.

My doctors believe that most of my medical problems (which include gastroparesis, dysautonomia, hyperthyroidism, eosinophilic gastroenteritis, and increasingly slow intestinal motility) are actually symptoms of a genetic mutation in the mitochondria of my DNA. Mitochondrial Disease is a misleading name, because there are thousands, if not more, of types of 'Mito', that can affect any part of the body that has mitochondria (everything except red blood cells) to any degree. Most forms of Mito can't even be tested for, and the genetic tests for the handful of types they can test for are frequently inconclusive or inaccurate and prohibitively expensive (the most basic blood test that my neurogeneticist ordered was nearly $20,000 and insurance usually won't pay for genetic testing, especially if you have Medicare/Medicaid.)

The mitochondria are like batteries for your body's cells. When there's a malfunction in the mitochondria, it's like having a dying battery in your flashlight. The light might come and go, or get progressively dimmer until the battery is completely drained. This is what happens to a human body with mitochondrial disease. And at this point, without the ability to do further testing, the belief is that this is what is happening to my body.

Because the past few months have been so crazy for me, I've been very bad at keeping up with all my loved ones on Facebook, especially since Facebook prefers to show me articles, pages, and picture shares over showing me the actual posts from said loved ones. The combination of this meant that I didn't remember (cognitive function is for squares) the conversation we had awhile back, that Stacy was planning to fundraise on my behalf (she asked if it would be okay)--so I didn't realize/remember it was going on, until she messaged me the other day about it. And when I saw how many people were involved, I was completely blown away to the point of being speechless--and anyone who knows me will tell you, it's very rare for me to not have something to say. ;)

when i said i wanted a new stomach
this isn't exactly what i had in mind.

Since then, I have gone back and read her posts on Facebook and Instagram, saw the article on Slipknotiowa.com, and cried several times. Aside of being so incredibly grateful to have a friend as amazing, smart, funny, supportive, and beautiful inside & out as Stacy (as I have been as long as we've known each other), I am blown away by her kindness, and by the amazing outpouring of support from the Slipknot community.

And this is why I am thinking back to that interview with Clown. Because I am looking at the <a href= GoFundMe page, and I am overwhelmed by the number of people who have been willing to help someone they don't even know—and even more than that, the encouragement and support in the comments. It's no secret that chronic and terminal illnesses carry depression with them--it's kind of inevitable. And when you find yourself filled up with sadness, a single kind word can mean an awful lot.

Outsiders look at the people lining a mosh pit or walking around with spiked jewelry and crazy hair, and they see something scary and ugly. But what I see is a community of people who have been freaks, outsiders, weirdos, and losers their entire life, who know what it's like to get kicked down and then stepped on. People who have refused to stay down, and have built their hearts up to resist whatever pain the outside world has to offer. I see a community of people who find solace and love and inner peace in the music, comfort in the culture, and the sense of belonging that a family gives you—and we are all a family. We are all connected by that invisible string, and when one person falls down, the rest of us feel the tug, and then we have a choice to either pull that person back up on their feet or cut the string and let them fall.

I am grateful beyond measure that you all have reached your hands out to try to help me stand up again. Thank you for not cutting the string and letting me fall. Thank you for letting me be part of the family.

\m/ \m/

"And they are beautiful, and, without them, I am nothing."
– Shawn "Clown" Crahan, Slipknot

the chubby tubie and other medical marvels

this entry, like so many others, started out as a comment to a dear friend. she, like me, is a bit on the fluffy side and as such, she has faced much of the same nonsense i have in regards to being ill and needing a feeding tube. there's an unfortunate and inaccurate belief among many people, including medical professionals, that if someone is overweight it is the source of any malady they experience. there is also a belief that those of us who are fluffy, chubby, pudgy, or squishy cannot possibly be in much danger of dying from starvation because hey, we have a few extra layers, right?

well, not so much, actually. in fact, not at all.


that's why i'm here to tell you that if you hold those beliefs you are sorely mistaken. and i want to help you, dear reader, to understand why what you know about weight is wrong, as well as to understand a bit more about how this disease that i and so many of my friends suffer from, works.

NECESSARY DISCLAIMER: im gonna preface this entry by saying anyone who has anything to say about my weight or anyone else's weight, whether they are heavy, thin, or "just right", will get a smackdown. so if you don't think you can read about a chubby girl or a skinny girl or see pics of them without making a nasty comment, dont read any further. someone else's body is really none of your business in the first place anyway. i'm writing this blog to educate, not to encourage stereotyping, shaming, and cruelty. nasty or ignorant comments will be removed and their writers will be permanently banned and possibly have their computer exploded from the inside out by my brother, the hacker slash codemonkey extraordinaire.

i also want to apologize (but only a little, since i wouldn't have written this if i didn't think it was important!) for the length of this, but i feel this is a very important topic that doesn't get discussed nearly often enough, and i feel that people who are heavy are often dismissed by doctors as well as others in the community, their friends, their family, and even perfect strangers. so i have a lot to say, and i want you all to take every word of it to heart---i think that everyone should know this stuff when it comes to the very touchy and often upsetting subject of being chronically ill and overweight at the same time, because even doctors assume that if you're heavy, that's why you're sick.

my beautiful & bubbly bestie

okay. onwards, dear reader.

first things first: weight is irrelevant.

no, seriously. hear me out. im old and i know things and this is an important thing that i want all of you to know as well. weight. is. irrelevant.

weight means nothing. nothing at all. there are people who are underweight and have been for their entire lives but were always healthy. my bestie pixi is one such person--even though she's chronically ill now, with a condition called UPJ (Uretero Pelvic Junction Obstruction) she has always been very thin and was in pretty decent health for most of her life.

there are also lots of people who are overweight or, yes, even morbidly obese who are healthy! no diabetes type II, no heart problems. athletic, active, healthy-eating people who just happen to be heavier than a chart hanging in a doctor's office somewhere says they should be. you can be healthy or you can be ill at any weight.

in fact, many times weight has nothing whatsoever to do with your health! in many, many cases, whether someone is overweight or underweight, weight can actually be a symptom of a problem rather than the cause of the problem.

im gonna give you a partial hit of my story here, and stick with me cause i promise its very relevant.

shortly before i was diagnosed with gastroparesis, i was the thinnest i'd ever been in my life. at 5'1 i was 148lbs. which is still overweight, but for me, for my body type, for my build and the way i carried the weight, i was wearing a

Helicobacter pylori, previously named Campylobacter pylori,
is a Gram-negative, microaerophilic bacterium found in the stomach.
Read more about h. pylori at ilovebacteria.com.

size 14/16 in little girls clothing, comfortably. that was after a lifetime of being very overweight. i

me at 148lbs in a child's tshirt.

started getting sick, and was first diagnosed with a raging helicobacter pylori infection that they said had probably been attacking my gut for years at that point.


they treated it, but i didnt get better. then they took my gall bladder out. and it still didnt get better. finally they diagnosed me with gastroparesis after an endoscopy revealed food that had just been chilling out in my stomach for over 72 hours already. for nearly ten years it was bearable. i threw up a few times a week maybe, or if i ate something really bad (deep-fried food, marinara sauce, etc). but i was functional and i just had to take some pills now and then, with an ER trip thrown in every so often for a "hard reset" when i got stuck in a vomiting cycle.

but things changed drastically in december 2011. my girlfriend and i ordered chinese food. all i had was white rice (i was never much of an adventurous eater), but we both got really terrible food poisoning and spent the following week in that special hell known only to those who have gotten really terrible food poisoning. at the end of the week, my love got better. but i never did. that bout of food poisoning set loose something in my body that i am still battling to this day. melodramatic phrasing aside, it truly changed my life forever, in ways i could have never imagined beforehand.

me at 148lbs again.

at that point i weighed probably somewhere around 250 or so. a lot for somebody my height and build. the jump from 148 to 250 came mostly from risperdal, but also some other psych meds plus spending a LOT of time locked up in a psych ward for weeks at a time (with no physical activity at all beyond walking from my bed to the cafeteria to group and back again) contributed as well. so, whatever. that made me morbidly obese and i was unable to lose that weight again.

much to my chagrin, even though i was throwing up every single day sometimes more than 20 times in a 24 hours period, i was *gaining* weight.

me at max weight, with a swollen "GP"
belly after eating a few bites of egg.

because of this i had a lot of doctors tell me, "well, you must be keeping something down. you're gaining weight, and your cholesterol, which was previously fine, is now off the charts." honestly for a bit i thought i was going crazy. but i finally got sent to a GI who was more concerned with my health than my weight, and my first NJ tube was placed, and suddenly i was able to function again. i wasn't even on formula at the time--just getting my meds through the tube improved my quality of life vastly.

up until a little less than a year ago (about winter 2013 or so, through summer 2013) i more or less maintained my weight. and even my labs, though they were borderline, were still just barely within normal range. for all intents and purposes, my body was telling my doctors that i was fine. but of course, i wasn't really. in march 2013, after almost a year of having NJ tubes in (for a total of 5 different ones over the course of 11 months), my GI placed the GJ tube, and we finally got approval for the proper formula and i was actually running feeds daily and it was all good.

more calories = losing weight?!

i was getting more nutrition than id ever had in my life (since i was a baby ive been a very picky eater and only eaten mostly carbs, even well before i was sick) but i was losing weight. how could such a thing even be possible?! because for the first time i was getting regular nutrition-not just calories, but all the vitamins and nutrients and micro-nutrients--my metabolism was like "whoah. dude. so sorry, i didnt realize i was supposed to be doing stuff. ill get right back on that." and it kicked in and started burning away the weight. my cholesterol labs went back into normal/low range as well.

it's actually pretty simple. when the body goes into starvation mode, it holds on to absolutely everything you put in it. a healthy body gets food regularly, separates the crap from the good stuff, absorbs the good, and throws the crap out (literally turning crap into actual crap.) but when you're not giving your body nutrition on the regular, your body goes into survival mode and is basically yelling at all of your organs, "guys! guys dont get rid of that! i dont care where you store it--stick it in an elbow or something, but we need to hang onto that. i need that, so dont get rid of it." and so your body, knowing that it's not getting fed regularly, becomes an extreme hoarder and it doesnt get rid of anything.

and of course, you're also dehydrated. so the body starts holding onto that as well. and when it gets to the point where you're not taking in much of anything, your body once again panics, and it starts digging into all that crap it stored up, the emergency winter supply of fat (fun fact: a person cannot BE fat. fat is a layer of a greasy-ish substance that forms under the skin, also known as 'adipose tissue'. the idea of a person literally being fat is slang and also inaccurate and mean.)

medicine, yay!

so, when the body panics and starts eating all the fat it stored away, it produces cholesterol as a by-product of that self-cannibalization. many people who are starving will see a sometimes serious jump in their cholesterol, and if, like me, their primary dr at the time is a doofus, he will tell them to stop eating fried foods, which is probably the least helpful advice for that situation ever.

so because i ramble lets recap. in the third person because it's fun to talk like that.

• lissy is throwing up a lot and cannot hold food down.
• lissy's metabolism panics and orders lissy's body to start holding onto every single cracker, popsicle, and grain of salt lissy does manage to keep down.
• this goes on for awhile until lissy's metabolism realizes "well, we can't stay alive on crackers." and orders the other organs to start cannibalizing as much of themselves and each other as possible.
• lissy's cholesterol goes up and lissy is still overweight, so nobody takes lissy seriously.
• lissy gets sicker and sicker until she can no longer function, and ends up in the hospital.
• lissy finally finds a doctor that understands this process, and they put a feeding tube in.
• lissy starts getting nutrition, and GAINS MORE WEIGHT. this is because her metabolism is still on alert level red. it hasn't realized that the nutrition will keep coming, so it's still holding onto absolutely everything.
• after a bit, though, lissy's metabolism realizes, "oh. this isn't temporary, guys. it looks like things are okay." and drops the alert level down from red "severe" back into blue "guarded".
• with the alert level back down, lissy's organs stop cannibalizing themselves and every spare bit of fat they can find, and rapidly lissy starts losing weight, because her body has realized that it doesn't need to be a hoarder anymore and called the sanitation commission to clean things out with a bit of help from miralax and fleet.
• lissy's weight loss slows and her cholesterol is back to normal. she's still chubby because she's a chubby person and always has been, but her body is functioning the way it's supposed to (more or less), and it has begun to lose weight at a rate of a few lbs here and there--a nice, healthy, SLOW, weight loss.

[PSA: fast weight loss is a very, very bad thing. no matter how healthy you think you're being when you lose weight, if you're losing weight fast, it can be extremely dangerous. healthy weight loss is no more than 1-2 pounds per week. speaking strictly calorically, a reduction of 500-1000 calories per day causes weight loss of

1-2lbs a week. anything more than that can be very dangerous and in some cases, life threatening.]

now, last year, when my nutrition crashed again due to the eosinophilic disorder and the incredibly harsh formula i was on that i could not tolerate, i was taking in basically nothing--not even the eat-and-puke cycle we're all so familiar with, i just flat out was taking nothing in because my body just became too weak to be vomiting 20+ times a day again. during that time (a period of about 3 months or so), i lost 70 lbs. which is very, very unhealthy and dangerous.

i suspect that because i was getting less than 500 calories a day, my body pushed right past the "hold onto everything" panic and just kind of gave up. at that point i was told that if we didn't get a grip on it very quickly, i didnt have a choice and was going to have to go on TPN (that's IV nutrition, generally given through a central line, for those playing the at-home version of this game.) thankfully my GI discovered through scope biopsies that i had eosinophilic gastroenteritis. (for those who dont know, i sugest checking out APFED to learn more about eosinophilic disease. but to give an idea, ive always referred to it as "the allergic-to-everything disease" because thats basically what it is--EoS provokes an immune respose from the body to anything and/or everything and while it really does vary what "safe foods" there are for

tubes are beautiful because being alive is beautiful.

each person with a form of eos, in general people with an eosinophilic disease's list of unsafe foods is much, much longer than their list of safe foods. there are people with eos who literally cannot eat any food at all and many who can only eat one or two types of food.)

i was given steroids and placed on a hypoallergenic elemental formula, and again, the weight loss plateaud.

currently i am still on the stereoid. i still have a GJ tube and am still on the elemental formula, but i am once again not doing so well with it. so even though i am STILL overweight--despite going from a maximum weight of 275lbs down to my current weight which i will not share--i am still pretty sick, and our priority right now is to get me to a place where i can run feeds regularly again.

but throughout all of this, my labs have never shown that i was starving (because i wasnt--i had lots of fat for my body to cannibalize, which kept my labs in the normal range, something that would not likely happen for someone who was thin to start with). i have never been even a "normal" weight for my height, never mind underweight. i have had a lot of people not take me seriously because hell, how sick could i be if i was so big?

and for the grand finale, even all of that set aside--one of the biggest issues with gastroparesis is vomiting. some people dont vomit, but most GPers do. and every single time a person vomits, they are doing damage to their stomach, esophagus, throat, teeth, and even their muscles, spinal cord, and believe it or not, eyes. vomiting is a very violent thing, and the body is only meant to do it in order to get rid of something that is toxic, such as spoiled food or poison. prolonged vomiting can and does cause all kinds of really serious and life-threatening issues.

- a mallory-weiss tear can cause internal bleeding so severe that a person could bleed to death interally before they even realized anything was wrong.

thumbs up for tube feeding!

- forceful vomiting can cause blood vessels in the eyes to burst and damage your eyesight (my eye dr regularly checks my eyes with every tool at his disposal because he is concerned about exactly that--something i didn't evne know was possible until he told me it was.)

- the acid your body produces that comes up every time you vomit does more damage than lindsey lohan on a bender. it strips the teeth of enamel and can cause tears and ulcers throughout the entire digestive tract.

- chronic dehydration can lead to all kinds of problems runing the gamut from UTIs to heart attacks to total renal failure. it also means there's not a lot of moisture in your intestinal tract and can cause obstructions, anal fissures, bowel tearing, external and internal hemheroids, bowel impaction, polyps, and the combination of all these side effects can lead to SIBO and other problems that can eventually lead to inability to voluntarily move one's bowels, necessitating ongoing laxative use and in some cases surgical repairs or the addition of an ostomy to allow the expulsion of waste.

- constant vomiting can also cause cancer in all the places it goes through: stomach, esophagus, throat, mouth--even the sinuses and ears by way of the throat. other complications can cause cancer and other serious issues in the other direction as well.

- sleep vomiting (something that i and many others have experienced) can lead to death by aspiration. (choking to death in one's sleep.)

- repeated vomiting strains the body and can cause spinal injury (i can't count the amount of times that i've thrown my back out just from vomiting), muscle strains and tears, bursted blood vessels, electrolyte imbalance, severe migraines, nerve damage, elevated blood pressure, tachycardia, heart attack, fainting, anyeurism, stroke, seizures, and death.

the bottom line is that a person with gastroparesis (or similar conditions) has all of the same risks and complications as someone with anorexia nervosa and bulimia combined, with a bunch of extra risks and complications thrown in just for fun.

people do not die from gastroparesis. gastroparesis is not a terminal illness.

but they do die from complications due to gastroparesis. and most of those complications are related to long-term damage from prolonged and violent vomiting, ongoing starvation, and simply having old food lingering in the digestive system for several days or longer.

gastroparesis is not about weight. 

its about the hell your body goes through as it tries to keep you alive.

i fight like a girl and i always will.

Down the Autism Rabbit-Hole and Back Out

It will probably not come as any kind of surprise to my readers that many of my friends, like myself, are Autistic. It may come as a surprise to some people that the majority of Autistics (or ‘Auties’ as I affectionately like to call us sometimes) bear no resemblance to Dustin Hoffman in ‘Rain Man’ whatsoever.

Recently a conversation took place on my personal Facebook wall. It involved discussion about various feelings and behaviors, and whether or not they were autistic in nature. At one point in this conversation a dear friend of mine who is an adult that does not yet have an official diagnosis of an Autism Spectrum Disorder began questioning himself. His last comment on the thread before I read it pulled at my heart metaphorically and inspired this entry.

“i'm falling down the 'am-i-really-autistic'
rabbit hole again, somebody pull me out.”
- Name Withheld, Facebook

The hurdles of getting a diagnosis as an adult are seldom worth jumping unless you need an on-paper diagnosis for school or work related accommodations, to qualify for disability-related benefits, or simply for your own peace of mind. Adult testing is mostly based on self-reporting and can be incredibly expensive. To date, most insurance companies will not cover it. As such, it’s very common for spectrum adults to either be self-diagnosed or diagnosed without specific testing by a physician, psychiatrist, or therapist.

Most of the information on autism is geared towards the parents of (most often male) autistic children; there is very little out there for adults, particularly female adults. The result of this lack of information and resources has been that many autistic adults stumble around in the dark blindly, trying to find their place in the world. I reject everything about Autism $peaks including the blue puzzle piece, but I find the more general rainbow jigsaw to be an accurate representation of autistic life—and not in the way most people probably think. I am not a puzzle to be solved, and I am not a puzzle piece that doesn’t fit. Rather, my spectrum diagnosis was a piece of me that linked a whole bunch of things about my personality together. Suddenly I ceased being a weirdo, a freak, quirky, moody, and anti-social. Suddenly, I was normal—just my own brand of it.

"I am not 'retarded.'
I'm just as special as anyone else,
maybe even a little bit more.
People who call me that are ignorant
fools or retarded themselves."
- Luke, The Story Of Luke (2012)

For many adults, the initial recognition of their autism can be a relief; however it can also be a source of pain, confusion, and constant questioning of one’s identity. Many spectrum adults, including me, find themselves at the start of their journey over-analyzing every feeling and reaction they’ve ever had. They desperately dig through their childhood memories, looking for autism or looking for experiences that ‘prove’ they are not autistic, depending how they feel about being autistic. 

This panicked rifling through your mind can cause incredible amounts of stress, depression, panic, guilt, fear, and can even induce PTSD if the individual was raised in an environment where they were punished verbally or physically for autistic behaviors. They might struggle with not feeling “autistic enough”, especially if their conversations about autism mostly take place with NTs (NeuroTypicals: non-autistics) or if they have few to no conversations about autism at all. Their behaviors may not match up with the behaviors of other autistic people they read about or know, and they may question the entire state of their being based on that point.

And into the rabbit-hole we go, and we can only hope that someone who cares will reach a hand down and help us climb out before we fall in too deeply.

And so this is my hand, reaching out to anyone who is gazing into that abyss and afraid they will slip. This is my hand, with all the love in the world and every inch of my soul, reaching out to hold onto you—whoever you may be—and help you glimpse the light even if just for a moment. Because sometimes that’s all you need; one moment of someone caring enough to reach out. I’m reaching for you, my autistic brethren. You are not alone.

This guy's walking down a street when he falls in a hole.

The walls are so steep, he can't get out.
A doctor passes by, and the guy shouts up,
"Hey you, can you help me out?"
The doctor writes a prescription,
throws it down in the hole and moves on.
Then a priest comes along, and the guy shouts up
"Father, I'm down in this hole, can you help me out?"
The priest writes out a prayer,
throws it down in the hole and moves on.
Then a friend walks by.
"Hey Joe, it's me, can you help me out?"
And the friend jumps in the hole.
Our guy says, "Are you stupid? Now we're both down here."
The friend says "Yeah, but I've been
down here before, and I know the way out."

- Leo McGarry, The West Wing (2000)

Please take this to heart.

NOBODY gets to define autism beyond the diagnostic criteria except the autistic person themselves. (And while I will mention again how much I despise and am against everything autism $peaks stands for, their coverage of the DSM-5 criteria is a helpful little page and you can view it here, although be sure to note that the Autism Spectrum criteria is a bit further down the page.)

Talk to other adult autistics. If you don't find other autistic adults in varying numbers that share any given behavior with you, I will film myself eating my fancy black and pink fedora and post it on YouTube. I promise you that.

The major mistake that people in general make is thinking that autism is a box, and you can just put all the autistic people inside the box and they'll all fit nice and neat, filed away quietly. But in real life we are every bit as varied as anyone else. A popular comparison I see (and a major point of the conversation that sparked this entry) is the various forms of stimming, because we have been told over and over again that stimming is simply rocking or flapping your hands.

The truth is that "stimming" is any repetitive motion brought on by extreme emotion: both negative and positive.

I have good stims and bad stims. Some of them are even the same stims. I might rock to comfort myself in a period of anxiety; I might rock because I’m so excited about a new dinosaur documentary that I can't even contain myself. When I am stressed I gnaw the heck out of a pacifier. When I am happy I clench my teeth and stretch my head to one side slightly. When I am happy, sad, bored, lonely, excited, in physical pain, sleepy, grumpy, Dopey, or Doc--or pretty much any other emotion at all (meaning I do it constantly), I clench my toes and sometimes hands.

When I am happy, I tap or drum my hands on my thighs or knees in a somewhat random pattern; when I am agitated I tap my hands on my thighs or knees rhythmically. In my autism, happiness is chaotic in a wonderful sort of way that I can never put into words, and rhythm, routine, and patterns bring me immense comfort when I am upset. That doesn’t mean all autistics function the same way. It also doesn’t make me any less autistic that my good feelings are chaotic and messy and some other autistics may experience good feelings in the same rhythmic and predictable way that I experience bad feelings.

Don’t ever make the mistake—any of you—of questioning your self-identity simply because you experience something differently from someone else, or because a behavior, urge, or feeling of yours isn't written down in a textbook somewhere.

Ole Golly from 'Harriet the Spy' (1996) once said, “There are as many ways to live as there are people in this world.” Autism isn't any different. There’s as many different ways to "be autistic" as there are autistics. You are you and you are wonderful and unique and there's nobody else exactly like you and there never will be. But I can guarantee you there are thousands of people, if not more, that share any given behavior, feeling, or urge that you have; whether they are autistic or not.

And if that still isn't enough to convince my fellow auties of how awesome you are, then it's time for you to read this beautiful article and remember that you are super great, and autism can be and often is every bit as joyful and wonderful as it is frustrating and upsetting.

There is no right way to be autistic.

There is no "good" or "bad" autism.

There are no "good" or "bad" autistics.

There are just good and bad days. Good and bad feelings. Good and bad events.

Life, and how you survive it.

 note: you may not reprint this blog entry anywhere
without my express permission. you may of course
share this link anywhere you wish--in fact, please do!

via icanhas.cheezburger.com

"there is no mountain i’ve found here that i can move.."

when it rains, it pours. i am barely holding my life together with both hands. my SSI income is just barely enough to cover my rent with enough left over for a coffee or two if im lucky. and today i received a letter from my landlord stating that there will be a 4% increase in my rent. because clearly i'm not already paying far more per month than this tiny, cramped apartment with a multitude of shady neighbors moving in, no handicapped parking, and a flight of steps that seems to get longer every time i have to climb it.

i haven't gotten my tuition refund yet so i went to student accounting on tuesday to ask why. they screwed up and something was checked off as full time even though i'm half time JUST LIKE LAST SEMESTER, and even though my tuition bill and financial aid letter were completely in line with half-time. i was expecting this money *last week*. i said, how long until its disbursed to my bank account? she goes, 3-4 days. i'm like.. my bills are already overdue.. i've got a shutoff notice on my electric cause i'm a month behind.. her response? "start calling family." i just looked at her for a minute and then said "i don't have any." because that's much simpler than explaining that my family is poor too. that i'm not like these 18 year old kids who can just pick up a phone and have a wire transfer in ten minutes. do you not think that i thought of asking my family already? i've cost my grandmother enough money because of my shitty health.. and even she doesn't understand exactly how much all the OTC things i need cost. there's all sorts of things that i need or have needed that insurance won't cover. she wanted to know why i had to buy my walker out of pocket. well, i have no reflexive response in my left leg and both legs frequently buckle while walking. but we don't know why yet. of course everyone suspects mitochondrial disease, but it's not an official diagnosis. and nothing else that i'm diagnosed with at this point is justification in medicare's eyes for a walker. i take benedryl very often to help with my allergies and nausea. it works fantastic and it's much more gentle than any prescription allergy med i could take.. but it means i have to buy it myself. tegaderms for my pain patches. adult diapers. organizational shelving baskets and drawers to organize the insane amount of medical supplies i have as well as keeping dangerous things out of reach of my very curious cats.

how nice it must be, for people who can just ring up mommy or daddy every time they need money. when i ring up my grandmother for something it means *she has to go without* so i simply don't do it unless its a serious necessity. my grandmother has spent her entire life sacrificing for this family and i am shouldering a tremendous weight every single day of my life over how much i'm costing her financially, and how much i am costing my entire family
(not to mention everyone else in my life as well) emotionally and mentally. before i got so sick i had a handle on things for the most part. after i managed to beat back all the false diagnoses (including bipolar disorder, schizophrenia, and dissociative identity disorder) and get off the 17 psych meds i was on, and i was finally a functioning human being. six years of my life are *blank*--i simply dont remember them thanks to all the medications i was on simply because nobody considered the idea that i might be autistic until well into adulthood. i was officially diagnosed with asperger syndrome about two years ago and the only psychiatric medication i take is something for anxiety now. i've made huge strides and i turned my life around. i worked hard to get myself on a positive trajectory, to become a person who accomplished things. a person who mattered.

and now everything is broken. it's all falling apart. i can't survive on my own, and all i am doing is causing the people i love pain and suffering. i cannot think of a single person who wouldn't be at least slightly better off if i ceased to exist. all i do is cost money and cause worry. i'm a walking breathing human shaped burden and i hate myself for it.

my grandmother. my mother. my sister. my brother. my aunts and uncles. my cousins. my friends. i *cost* everyone in my life in one way or another. i don't understand how something so worthless can cost so very much. but everyone would be better off if i got hit by a truck tomorrow. people would grieve and then move on with their lives just like everyone does when someone dies. world keeps spinning, life goes on. i wish i had it in me to remove myself from the equation, but i dont. so ill just keep on going and infecting everyone around me like the plague, and sitting here uselessly while they suffer.

thankful.

i have so much to be thankful for this year.

first, i want to say that above everything else i am thankful for the ENDLESS kindness i have been shown. i cannot even begin to name all of the people who have selflessly helped me, sent me supplies, stayed up late talking to me, guided me through this maze of illness, sent cards, gifts, made things for me. in most cases these amazing things have come from people i have never met in person. in some, it has come from people i have never even talked to. i am absolutely blown away by the outpouring of love, of time, of energy and kindness that i've experienced, not just this year but througout my life. every time i have fallen down or seen myself stumbling, someone has stepped to my side and taken my arm and helped me up. especially since i have been here in new jersey, essentially alone and a thousand miles from my family.

"I am calling from a payphone,
twenty three hundred miles away.
Bad things I can not even say.
If not for the kindness of strangers,
I would not be alive today."
- Bif Naked, Story of My Life


which brings me to major point #2---my family. you are all insane, every one of you. you are crazy people. i come from a long line of nutjobs. but my god, how much i love you all. i see so many people who have been rejected by their families, or had no choice but to reject their families. people whose families aren't involved or simply dont care. and every day i am thankful that as batcrap crazy as you all are, you're always here for me. i always know in a crisis that my family will step up, no matter what else is going on, and pull my butt out of the fire. i love you all--whether we share blood or don't, i know that we share love which is a much stronger bond anyway.

i am thankful for j. i wouldn't be alive right now if it wasn't for her, and i don't mean that figuratively. for the past 13+ years she has been at my side, holding my hand and keeping my head above water.

i am thankful for every last one of you reading this right now. i am thankful for my best friends, i am thankful for my friends, i am thankful for every one of you--my LJers, my GTLers, my former-TAA'ers, my whedon-ers, and everyone in between.

and now the smaller things i am thankful for:
- that i live in a time where i don't have to die because modern medicine has designed tubes and bags and formulas and medications that keep me alive, even if i'm not always functioning at the higher levels.
- that i have a medical team that honestly cares about me and wants to help.
- that i have the opportunity to go to school and that i am able to get the accomodtions i need to make this possible.
- i am thankful for marinol. as much as i hate feeling stupid, marinol has enabled me to eat small amounts of certain foods by mouth and kept me off TPN when things were at their worst.
- i am thankful that i am slowly finding what works for me and becoming able to spend less of my life focused on my medical situation.
- i am thankful for the three beautiful loving cats that are currently cuddled up to me trying to stay warm, even if occasionally they are furry little abominations who drive me nuts.
- i am thankful that despite the abuse i heap onto it and the fact that i am well overdue for an oil change, my car---which is solely responsible for my personal freedom--has held up.
- i am thankful for all of the little things in life that make me happy--dinosaurs, sara bareilles, hunger games, harry potter, john green, francesca lia block, joss whedon, jennifer lawrence, west wing, super soft cuddly things, sunsets, my favorite books and authors, my favorite comfy sweatpants.

and finally, i am thankful that i was lucky enough to know laura kostecki-howe, shea heribacka, haley stonehocker, joe 'koker' kayes, and shane cornwell. i carry you all in my heart every day, and i miss you all every day. sometimes the pain is overwhelming, but i try to remember how lucky i am to have known you, and that none of you are in pain anymore, and i try to let that comfort me. i miss you all, and i hope that somewhere out in the universe you're all there, waiting for our friends who are not doing so well, and waiting for me someday. keeping an eye on rontu, fiver, annabel lee, sweet j, christopher, and all the other furry family members that are no longer here.

my life is complicated, and sometimes it feels like its too much for me to handle. a lot of the time i am scared about what my future holds. but i am still here. i am still fighting. i am still screaming for a cure for all of us, every last one of us.

and i won't ever, ever stop.