Living with SMA often feels like I’m battling against an invincible enemy.
There is simply no way to stop the insidious progression of my disease. Sure, there are measures I can take to slow it down—certain “treatments” like using a feeding tube or sleeping with a BiPAP to keep my lung muscles strong. However, despite my best efforts, the effects of my disease are going to worsen until I lose every bit of movement and ability that I currently possess. It’s a terrifying thought when I’m truly able to wrap my head around it.
But as you know, this is not a sob story. Simply understanding and accepting that the enemy can’t be defeated is no reason to lie down and raise the white flag. In fact, quite the opposite: recognizing my mortality has inspired me to live with as much passion and intensity as I can pack into every day.
Think about all of the things that make being alive so beautiful. Think about laughing until your eyes swell with tears. Think about the way your stomach jumps when you see the one you love. Think about driving on the highway with the windows down. Think about a chilled glass of iced tea in the summer. Think about your pets. Think about your favorite food. Think about the memories that you will cherish forever.
There are so many reasons to keep battling.
One of the reasons that’s closest to my heart is an important goal I set for myself a few years ago: I want to create a positive impact on the world that will last beyond my lifetime.
I think I’ve begun to accomplish that with the work we are doing here at Laughing At My Nightmare, but I am only just getting started. Last year, we created a program that provides equipment to people living with muscular dystrophy. I’ve watched in awe as this program has taken off and grown to supply 17 people with vital equipment to help them thrive.
In a very real way, my “fight” against my own disease has been strengthened by the life-changing results I’ve seen from this program.
My battle now has a focus: expand our program until we never have to turn people away; provide equipment to every single person who comes to us in need. This is how I will make my mark.
Obviously, the challenge before me is monumental. The difficulty excites me, but I’m also not fighting alone. You, our loyal supporters, have been by my side this entire time, whether you’re reading and supporting my writing, donating to our mission, or reaching out to say “Hey Shane, how have you been feeling lately?”
Tonight, I am launching a brand new campaign to fuel our equipment program. This is a very big moment for us, as a successful campaign will allow us to help many more people this year and beyond. My hands are actually sweating as I type this.
On the attached page below, you will find a video from Sarah and me that explains the exciting goals we are attempting to accomplish.
If you are able, I would ask you to consider making a gift to our charity. But the absolute biggest way you can help is by reblogging this post on your page. We will only be successful if we come together to make this viral!
I believe that together we can reach our goal, and that confidence comes from the outstanding support you’ve shown us in the past. You’ve proven to me that a community of passionate people are capable of achieving greatness.
The progression of my disease will not be stopped, but I believe that by working hard and focusing on what truly matters in life, my battle against it will not be in vain, and I want to thank you for giving me that opportunity.
Hi, guys. Here is my heteronormative-as-fuck list of men to not fuck in 2k16.
Man-Literature-For-Men Man - Are Hemingway/DFW/Franzen bad authors? IDK. Life is complicated and shit, but your top author list should cite something not from the White Man’s Handbook for Looking Learned
The Christopher Hitchens/Malcolm Gladwell/TED Talks Guy - This man is gonna yell at you in an Olive Garden about how he took philosophy 101 and condescend to you about your worldview. None of this in 2k16. You want to act like you know something, you better actually know something.
The Ayn Rand Lover/Libertarian - Libertarians are people who read a Nietzsche quote on a desk calendar once and cemented up their worldview. No emotional children in 2k16.
The Male Feminist - This man is gagging to call you a cunt in bed. And maybe that floats your boat but there’s gonna be some half-hearted oral to follow so… he doesn’t get this one. Also, he WILL talk over you at a party about bell hooks. This man is the worst man because he has so assured himself that he is the best man.
Guys with No Guy Friends - In 2k15, we learned to back away from the woman who “doesn’t get along with other women.” The same is true of men who “don’t get along with other men.” They’re relying on platonic women for all the emotional labor in the world and aren’t gonna have a good relationship with you either.
A Man All About Space-Based Franchises - We fucked enough dweebs in 2k15. Star Wars is gonna leave the box office and, frankly, “nerd culture” is founded on talking loudly and sweatily over women. It is fine to like nerd shit but don’t be all about it.
“I’m Working On…”Guy - Unless that phrase ends in “my car,” run away from that man. He’s gonna be working on that play/movie/screenplay/adaptation of/book/novel/comic book for the rest of his days without any forward momentum or planning. He’s not “talking to” some agents. He’s talking to his mom and his diary.
The Wet Mop - This guy had hopes and dreams and then he fell down in a puddle. You’re walking around like a person who has her shit figured out, and he wants some of that. But you’re gonna try to lean that wet mop against something and it is gonna fall down again twice as hard. In 2k16, just leave that mop on the floor. Let it figure its own shit out.
The No-Bed Guy - Does this guy have a twin bed? Does he have a mattress on the floor? Does he have a futon? Does he have a mattress on a box spring on the floor? Does this guy have an air mattress? Does this guy just sleep on a pile of ex-girlfriend’s old scarves? Do not sleep with this man. If he isn’t bothering to invest in a bed frame and a bed you can comfortably fuck in, he won’t bother to invest in you.
The Finance Guy - Do not fuck this man. Have this man take you to dinner, and don’t fuck him. Have this man buy you some stuff, and don’t fuck him. Make this man take you to France, and don’t fuck him. Make him buy you a car, and don’t fuck him. Don’t fuck this man. It will drive him nuts, and he’ll think about you constantly when he is in the suburbs with two kids that have the names he thought about giving to boats, and you’re doing your part to destroy the capitalist system from the inside. Plus, he is 100% going to be bad at sex.
A Man with An Active Reddit Account - I do not need to explain this one.
A Man Who Reads Richard Dawkins - No one wants a man playing devil’s advocate between the sheets.
The Man with Six Shirts - This goes back to No-Bed Guy. If a man cannot invest in himself, he cannot invest in you and you have THINGS TO DO. You have things to do and places to be and this man owns SIX SHIRTS. Do not reform this man in 2k16. Leave this man where he is.
The Man Who Mentions High School - Why? Why is he doing this? Does he have no plans for 40? For 30? Does he miss the days when his mom made him lunch and his only responsibilities were thinking about how he could be an astronaut but not actually doing anything to be an astronaut? Get away from this man.
A Man with a Hoverboard - Either you are accidentally considering fucking a teen or you are considering fucking a lawyer. Either one should be illegal. No men who embrace high-cost fads in 2k16. They’re gonna think they can “trade up” at some point.
This list will be ongoing, because men keep being alive in new and terrible ways.
Important PSA.
But for real. In 2015 I dated six shirts guy. Never again!!!
You have things to do and places to be and this man owns SIX SHIRTS. Do not reform this man in 2k16. Leave this man where he is.
“Let’s face it - English is a crazy language. There is no egg in eggplant nor ham in hamburger; neither apple nor pine in pineapple. English muffins weren’t invented in England or French fries in France. Sweetmeats are candies while sweetbreads, which aren’t sweet, are meat. We take English for granted. But if we explore its paradoxes, we find that quicksand can work slowly, boxing rings are square and a guinea pig is neither from Guinea nor is it a pig. And why is it that writers write but fingers don’t fing, grocers don’t groce and hammers don’t ham? If the plural of tooth is teeth, why isn’t the plural of booth beeth? One goose, 2 geese. So one moose, 2 meese? One index, 2 indices? Doesn’t it seem crazy that you can make amends but not one amend? If you have a bunch of odds and ends and get rid of all but one of them, what do you call it? If teachers taught, why didn’t preachers praught? If a vegetarian eats vegetables, what does a humanitarian eat? In what language do people recite at a play and play at a recital? Ship by truck and send cargo by ship? Have noses that run and feet that smell? How can a slim chance and a fat chance be the same, while a wise man and a wise guy are opposites? You have to marvel at the unique lunacy of a language in which your house can burn up as it burns down, in which you fill in a form by filling it out and in which an alarm goes off by going on. English was invented by people, not computers, and it reflects the creativity of the human race (which, of course, isn’t a race at all). That is why, when the stars are out, they are visible, but when the lights are out, they are invisible.”
But, no, because there are reasons for all of those seemingly weird English bits.
Like “eggplant” is called “eggplant” because the white-skinned variety (to which the name originally applied) looks very egg-like.
The “hamburger” is named after the city of Hamburg.
The name “pineapple” originally (in Middle English) applied to pine cones (ie. the fruit of pines - the word “apple” at the time often being used more generically than it is now), and because the tropical pineapple bears a strong resemblance to pine cones, the name transferred.
The “English” muffin was not invented in England, no, but it was invented by an Englishman, Samuel Bath Thomas, in New York in 1894. The name differentiates the “English-style” savoury muffin from “American” muffins which are commonly sweet.
“French fries” are not named for their country of origin (Belgium or Spain, depending who you ask), but for their preparation. They are French-cut fried potatoes - ie. French fries.
“Sweetmeats” originally referred to candied fruits or nuts, and given that we still use the term “nutmeat” to describe the edible part of a nut and “flesh” to describe the edible part of a fruit, that makes sense.
“Sweetbread” has nothing whatsoever to do with bread, but comes from the Middle English “brede”, meaning “roasted meat”. “Sweet” refers not to being sugary, but to being rich in flavour.
Similarly, “quicksand” means not “fast sand”, but “living sand” (from the Old English “cwicu” - “alive”).
The term boxing “ring” is a holdover from the time when the “ring” would have been just that - a circle marked on the ground. The first square boxing ring did not appear until 1838. In the rules of the sport itself, there is also a ring - real or imagined - drawn within the now square arena in which the boxers meet at the beginning of each round.
The etymology of “guinea pig” is disputed, but one suggestion has been that the sounds the animals make are similar to the grunting of a pig. Also, as with the “apple” that caused confusion in “pineapple”, “Guinea” used to be the catch-all name for any unspecified far away place. Another suggestion is that the animal was named after the sailors - the “Guinea-men” - who first brought it to England from its native South America.
As for the discrepancies between verb and noun forms, between plurals, and conjugations, these are always the result of differing word derivation.
Writers write because the meaning of the word “writer” is “one who writes”, but fingers never fing because “finger” is not a noun derived from a verb. Hammers don’t ham because the noun “hammer”, derived from the Old Norse “hamarr”, meaning “stone” and/or “tool with a stone head”, is how we derive the verb “to hammer” - ie. to use such a tool. But grocers, in a certain sense, DO “groce”, given that the word “grocer” means “one who buys and sells in gross” (from the Latin “grossarius”, meaning “wholesaler”).
“Tooth” and “teeth” is the legacy of the Old English “toð” and “teð”, whereas “booth” comes from the Old Danish “boþ”. “Goose” and “geese”, from the Old English “gōs” and “gēs”, follow the same pattern, but “moose” is an Algonquian word (Abenaki: “moz”, Ojibwe: “mooz”, Delaware: “mo:s”). “Index” is a Latin loanword, and forms its plural quite predictably by the Latin model (ex: matrix -> matrices, vertex -> vertices, helix -> helices).
One can “make amends” - which is to say, to amend what needs amending - and, case by case, can “amend” or “make an amendment”. No conflict there.
“Odds and ends” is not a word, but a phrase. It is, necessarily, by its very meaning, plural, given that it refers to a collection of miscellany. A single object can’t be described in the same terms as a group.
“Teach” and “taught” go back to Old English “tæcan” and “tæhte”, but “preach” comes from Latin “predician” (“præ” + “dicare” - “to proclaim”).
“Vegetarian” comes of “vegetable” and “agrarian” - put into common use in 1847 by the Vegetarian Society in Britain.
“Humanitarian”, on the other hand, is a portmanteau of “humanity” and “Unitarian”, coined in 1794 to described a Christian philosophical position - “One who affirms the humanity of Christ but denies his pre-existence and divinity”. It didn’t take on its current meaning of “ethical benevolence” until 1838. The meaning of “philanthropist” or “one who advocates or practices human action to solve social problems” didn’t come into use until 1842.
We recite a play because the word comes from the Latin “recitare” - “to read aloud, to repeat from memory”. “Recital” is “the act of reciting”. Even this usage makes sense if you consider that the Latin “cite” comes from the Greek “cieo” - “to move, to stir, to rouse , to excite, to call upon, to summon”. Music “rouses” an emotional response. One plays at a recital for an audience one has “called upon” to listen.
The verb “to ship” is obviously a holdover from when the primary means of moving goods was by ship, but “cargo” comes from the Spanish “cargar”, meaning “to load, to burden, to impose taxes”, via the Latin “carricare” - “to load on a cart”.
“Run” (moving fast) and “run” (flowing) are homonyms with different roots in Old English: “ærnan” - “to ride, to reach, to run to, to gain by running”, and “rinnan” - “to flow, to run together”. Noses flow in the second sense, while feet run in the first. Simillarly, “to smell” has both the meaning “to emit” or “to perceive” odor. Feet, naturally, may do the former, but not the latter.
“Fat chance” is an intentionally sarcastic expression of the sentiment “slim chance” in the same way that “Yeah, right” expresses doubt - by saying the opposite.
“Wise guy” vs. “wise man” is a result of two different uses of the word “wise”. Originally, from Old English “wis”, it meant “to know, to see”. It is closely related to Old English “wit” - “knowledge, understanding, intelligence, mind”. From German, we get “Witz”, meaning “joke, witticism”. So, a wise man knows, sees, and understands. A wise guy cracks jokes.
The seemingly contradictory “burn up” and “burn down” aren’t really contradictory at all, but relative. A thing which burns up is consumed by fire. A house burns down because, as it burns, it collapses.
“Fill in” and “fill out” are phrasal verbs with a difference of meaning so slight as to be largely interchangeable, but there is a difference of meaning. To use the example in the post, you fill OUT a form by filling it IN, not the other way around. That is because “fill in” means “to supply what is missing” - in the example, that would be information, but by the same token, one can “fill in” an outline to make a solid shape, and one can “fill in” for a missing person by taking his/her place. “Fill out”, on the other hand, means “to complete by supplying what is missing”, so that form we mentioned will not be filled OUT into we fill IN all the missing information.
An alarm may “go off” and it may be turned on (ie. armed), but it does not “go on”. That is because the verb “to go off” means “to become active suddenly, to trigger” (which is why bombs and guns also go off, but do not go on).
Going to get so much use out of this with the copy desk