What It’s Like to Live With EDS (Because Clearly People Still Don’t Know)

Yesterday, I found out that a friend who shares my illness, a friend who was instrumental in my pursuit of diagnosis and proper treatment and who is a publicly visible advocate for disabled people, was being stalked by someone who accused them of “faking” and “has a friend who is writing an article about it.”

The “proof” that my friend is faking their illness? Sometimes they stand up to take selfies. Sometimes they go to see a band. They have tattoos even though EDS affects the skin.

In short, they do things that most people with EDS do, when they can. We can’t always, but when we can, we post about it online because this is the life we want people to see us living. Because we can’t tweet about our aches and dislocations and accessibility nightmares all day. No one would want to be friends if we did that, and we know it. So we cultivate carefully, and try to show as many “good days” as possible, even if a good day only lasts three minutes.

Sometimes I save pictures and stories instead of posting them right away. I wait for a day when I can’t leave my bed, so I’ll have something to talk about while I’m applying ice packs and heating pads and medications. The pressure to seem normal and fun is enormous. I am working with fewer materials than most.

If you go around trying to poke holes in people’s stories of medical journeys, thinking that you know what life is like for them and how it should look on the outside, I want you to imagine something for me.

Imagine you got a car for your eighteenth birthday.

The car looks good, but it has some problems. Sometimes the A/C quits. Sometimes it stalls. It pretty much always shudders and knocks, but you and your friends all get used to that. You hardly notice it anymore. Over time, though, you start to think that somebody rolled back the odometer on this beast; it seems to have more frequent and serious problems than your friends’ cars. When you take it into a mechanic, it’s never just the brake pads that need replacing, it’s always the discs. The mechanic seems a little baffled by your old-new car. They’re still happy to charge you, though.

You can’t afford a new car, and you can’t really afford to keep taking this one into the shop, either, so you go through a lot of duct tape and Bondo. You learn to do some work on it yourself, even though you don’t have all the tools. You spend a lot of time washing it and touching up paint to make it look presentable. Once in a while, someone compliments you on it, and you’re a little baffled because you know how it runs, but they don’t, so you smile and thank them.

At some point, you decide that even though your car is unreliable, you want to take a trip out of town. It breaks down in the driveway. You stay home and don’t mention your disappointment to anyone.

When you take it back to the mechanic, he says things are getting worse and will be even more expensive to fix now, but you don’t have a choice. You get the worst of it fixed. And still, it rattles and shakes and the driver’s side doors won’t lock and sometimes it breaks down for no reason.

Now imagine you can never get out of the car.

 

***

 

There is never a reason to interrogate a stranger about their disability.

Health Update

There’s a lot going on in this body.

It’s amazing to me that so many people get to go through the first thirty, forty, fifty years of their lives without thinking much about their meatsuit. It doesn’t interrupt them. It doesn’t stop them from going places. It doesn’t rebel when they eat perfectly normal things. Amazing. If you have that, please take a moment to appreciate it.

As for me, physical therapy has resulted in more injury than progress, I’m shedding weight again despite all efforts, and now it turns out I need fairly serious nose surgery.

(TW: Surgery, gross.)

My breathing has gotten worse over time, and recently I had a sinus infection so bad that it made my teeth ache. For most of my life, I have avoided going to a doctor about my nose. It’s a little damaged and a little funny-looking and a little dysfunctional, but I chalked it up to “has character” a long time ago and wasn’t interested in changing it. Unfortunately, it turns out it’s getting worse and needs changing.

I finally got it examined. I have a significantly deviated septum and also need something called a turbinectomy. As this will change the structure of my nose, I discussed it with two different doctors and the best plan is to have rhinoplasty done at the same time, effectively to reconstruct a nose that isn’t all caved in from scar tissue removal. That part won’t be covered by insurance. I won’t be able to take my usual regimen of painkillers in the weeks before surgery. Insurance won’t cover some of this.

So some time this year, I’ll be out of commission for a month for a very expensive surgery that will leave me with a mystery nose. Maybe I’ll breathe and sleep better. Maybe it will look “normal.” Maybe my body will repair itself well enough that this will actually be fixed.

Cross your fingers for me.

Title

As you can probably tell from the title of this blog being “Title,” my composition skills are failing me. The brain is tired. In a better place than the last few months, but tired.

Still, the gap between blogs was bordering on too wide to jump, so here’s a wobbly platform to stand on between now and when we next catch up.

I have been working hard. And when I say “working hard,” I want to give you some idea of what I mean: I have been editing one book of my own before it goes off to the publisher, editing a book of someone else’s before it goes to press, serving on the Organizing Committee of an NYC-DSA Branch, and going through physical therapy. This is a lot for someone whose physical energy maxes out at about 30% of an able-bodied person.

So you can see how writing blogs hasn’t been my strong suit lately.

The good news is, there is likely a new book coming within the year.

New Year, Very Similar Me

There’s only so much a girl can change. Perhaps I am growing old. Except that college kids keep mistaking me for their people, so possible I am not growing old correctly. All the same, I refuse to give up my purple hair or my gratuitous cursing.

Anyway.

Each year, I look around at the flurry of resolutions, leave-it-in-the-last-year lists, and ambitious new goals, and I think, how much of this can apply to me? What can I do better? It seems like the kind of thing you’re supposed to write a blog about. But the answer this year is not much. I am already going full tilt.

I am in physical therapy, trying to build strength. I am still learning a new musical instrument to the best of my dexterity. I’m as politically active as I can get. I wrote a new book last year, and I’ll write a new book this year. I’ve made all the dietary adjustments one can make in the pursuit of good health.

I think, generally, the idea is to look at the ways in which you kind of suck and improve upon them. I’ve hit a wall there. The things that would improve me—more energy, more time, less cyclical Flowers for Algernon-ing due to medications and vitamin deficiencies—are outside my power.

I don’t think any of this is so bad. I can’t fly, either. Everyone lives with their limitations. I’ve tried busting mine, and mostly I just get my havoc wrecked when I do that, so I’ve learned to knock it off.

And I’ve already got a lot of things to work on. Concrete things I can do. Things I will do, slowly, over the course of the year. This is the list:

  • Finish one new novel
  • Walk all the way around Central Park without fainting or falling
  • Run for an office within NYC DSA

And that’s it. Everything else is ongoing, or incidental, or allowed to fall by the wayside.

Happy 2018, everyone.

Updates from NaNoLand

AAAAAAAAAAAAAAAAAAAAAAAAAAAHHHHHHHHHHHHHHHHHHHHHHHHH!

Okay, no, but seriously.

It’s National Novel Writing Month again, that time when novelists and novelist hopefuls set out to write 50,000 new words in one month. This year, I’m a NaNo Rebel (as defined by the NaNo show-runners) because I’m working on an existing project that already had ~30k words on November 1st. This works out well, because it needs about 40k more in order to be finished…not the full 50k, so I can give myself a few days off without failing, but still a pretty serious number that means I need to buckle down.

So far, NaNo is going more or less as usual for me. Week one was full of thrilling, overachieving, victorious days. Week two is a disaster in which I came down with the plague (read: severe cold) and dyed my hair a color about which I have mixed feelings. Still aiming for 1,667 words per day. Yesterday I only got 1000, but otherwise I’m on track.

Not gonna lie to those eyeballing NaNo and thinking of giving it a shot; it’s hard. By week two, your brain turns into a sort of husk. By week three, everything else in life has lost all meaning. At the end of the month, you’ve forgotten how to be a normal person entirely.

But hey. 50,000 new words.

See you on the other side.

Long Absence, Few Words

First off, it’s nice that I can post any old thing on this blog and y’all read it anyway. You might be here for the politics, or the writing, or the queerness, or the book recs, but you seem to keep reading regardless of my dumping uncategorized content in here. I love you, too.

In the personal sphere: Went back to Vermont last week. Met friends from ages ago as their more fully-cooked adult selves, which was nice. Climbed a very small mountain. Got tattooed.

In books: Still working on two writes and one edit. Planning to cheat at NaNoWriMo by working on an existing project, but I should be able to polish off one of those two books in writing by the end of that month. Life has been more action than fiction this year, but I did more good that way. Still trying to balance both.

In political junk: I have signed up for too many things. Informal collection of friends writing letters to government has been dubbed Activist Scouts. DSA has so many opportunities to do good work in the community, on and off my feet, that I accidentally signed up for more work than I have waking hours, but there’s lots of people to do the work, so I’m working on scaling back. Still marching. Still painting signs. Still teaching.

In health news: Well…I mean, what do you want to know? Right now I’m laid up because I took too many stairs to get to the 4 train and my knee (not my hips for once!) gave up. Heart meds seem to be helping, so with any luck, it will be a while before that part of me ‘splodes. Still working on my vitamin intake. Meds are now a nice coordinated pastel collection, so it looks like I swallow an Easter egg every day. Weight is good. Feeling as good as can be expected. 7 Day Forecast: Happy with a high chance of aches.

If I missed the category you signed up to this blog for (what else do I do? DIY projects? Feminist rants?) feel free to put in requests in the comments section. More Ask An Apocalypse Author blogs are coming soon.

Apocalypse Food

(This post is part of the Ask an Apocalypse Author series. Credentials are at the end of the post. If you have suggested topics, please leave them in the comments.)

Let me say this right off the bat: I’m not going to teach you how to feed yourself long-term in a post-apocalyptic wasteland. If that’s what you’re looking for, you should know that it starts with moving to a forested northern state and buying a minimum of ten chickens and a mating pair of goats. Also, if you’re going to grow romaine as a food staple, know that it’s a water hog, so you’d better have clean, frequent rain.

*ahem*

Right. I wasn’t going to talk about long-term food.

What I will talk about is preparing your home for short-term emergency, like a natural disaster, extended power outage, or general disruption in your ability to acquire groceries.

A few things you need to consider when choosing food

  • Does it take clean water to prepare?
  • Does it need to be cooked?
  • Does it require refrigeration?
  • How long will it last on the shelf?
  • Can everybody eat it? (My likely apocalypse crew includes a Celiac, two peanut allergies, and one dairy allergy. I try to think of that when stocking up.)

Refrigeration is a non-starter. You can’t count on having it. Anything that has to be refrigerated is out. If you have life-saving medications that require refrigeration, you should always keep several ice packs in your freezer so that you can throw them in a cooler with your meds if the power goes out.

Food that needs fresh, clean water to be edible (rice, potato flakes, pasta, etc.) isn’t necessarily a bad choice, but it shouldn’t make up all of your stash, and it’s a good idea to keep a few gallons of bottled water in a closet for cooking as well as drinking. You will need more water than you think.

Heat is a manageable problem as well. Throw a few cans of Sterno in with the bottled water, and you’re set for a while. In an emergency, though, anyone with a lighter and some common sense can rig up a stove. Two cinder blocks, a newspaper, a busted-up end table and a frying pan will do in a pinch. If at all possible, cook outdoors. If not, do what you can for ventilation.

So, what do you keep in the pantry?

Canned goods are your friend here. Canned soups, meats, fruits, veggies, and so on will last for a long time, they don’t need outside water or ever heat to be edible, and you have a variety of options.

For dry goods, some are better than others. Cereals are great, but may not have the shelf life of a can of tuna. Rice, pasta, and plain potato flakes all last for a long time, but they need water. Jerky is good, but can be a lot of salt. Same goes for peanuts, almonds, etc.. Dried fruit isn’t a terrible idea, either, but again, the shelf life isn’t ideal.

Jellies, jams, preserves, and similar are all great. Just make sure you don’t make grape jelly your only emergency food. One can not live on sugar and gelatin alone.

If you want to do a little cheap preparation for the possible long term, it wouldn’t kill you to keep multivitamins and even more large bottles of water around. The water is most important. You won’t realize how much you use until it suddenly isn’t coming out of the faucet.

Putting it into practice

The best practice is to stock up on food you would eat anyway and cycle through it, so that nothing has a chance to expire but you always have quite a bit extra. Order canned stuff in bulk, and when it’s half gone, order replacements. Keep an extra few boxes of your favorite cereal. Being prepared for a short-term emergency isn’t hard, it just means developing good habits.

Prepper websites (and Amazon, if it gets a whiff of you shopping for the apocalypse) will try and sell you five gallon buckets of dehydrated eggs and meal kits that last for twenty years. Unless you have a fallout shelter on your property, this probably isn’t practical. Try to imagine what even a year of meals looks like. But what you can do is have supplies in place so that you don’t have to worry for a while if your grocery store gets washed out by a flood or the power goes out for a few days.

Don’t forget your non-food staples

If you want to take the next step and make preparations for your comfort, here are my top tips: wet wipes, dry shampoo, and an empty five-gallon bucket with a lid and a bag of cat litter. You’ll figure out what those last two are for if the water goes out and the toilet stops working.

***

The author of these posts in a writer of apocalyptic fiction as well as an experienced woodswoman and avid researcher. She learned to gut fish at age 8, received her orange card (hunter safety cert.) at age 11, and her first compound bow at age 12.

She has worked in state parks and on trailblazing jobs for the conservation corps, as well as in hardware stores and on a landscape maintenance crew (in sub-zero temperatures). She can back a Kubota with a five-foot plow and a six-foot trailer of rock salt into a seven-foot garage bay. On ice.

 

fire

What Is A Bug Out Bag?

(This post will become part of the Ask an Apocalypse Author series. Credentials are at the end of the post. If you have suggested topics, please leave them in the comments.)

A bug-out bag, or BOB, is a good for anyone to keep around, especially those who live with the strong possibility of natural disaster. The point of a BOB is that in case of emergency, you will just be able to grab your everyday bag and your BOB and go.

Here’s basically what a BOB should contain:

  • Non-perishable snacks (nuts, jerky, hard granola bars)
  • Water bottles
  • A basic first aid kit (including medications you and your family need)
  • Hygiene kit (toothbrush, toothpaste, wet wipes, soap, tampons etc. if needed)
  • Dust masks
  • Space blankets
  • Hand warmers
  • Flashlight (hand-crank or with batteries stored separately)
  • Extra socks and underwear
  • Work gloves
  • Lighter
  • Full-tang camping knife
  • Solar or crank-powered AM/FM radio
  • A small sewing kit (needles, thread, safety pins)
  • Playing cards
  • Notebook, pencils, and sharpener
  • Duct tape
  • Copies of important documents (Birth certificates, insurance, etc.)
  • At least $20 in cash

You can customize as you see fit, but remember that you’re going to have to carry it and you might need to locate something in the kit quickly, so don’t pack for a two-week vacation.

The bag you use to hold it all is up to you, but a water-resistant backpack is generally a good idea. Nothing with a short handle. Rolling luggage isn’t going to work out for you either.

For more guidance, check out this guide from FEMA.

***

The author of these posts in a writer of apocalyptic fiction as well as an experienced woodswoman and avid researcher. She learned to gut fish at age 8, received her orange card (hunter safety cert.) at age 11, and her first compound bow at age 12.

She has worked in state parks and on trailblazing jobs for the conservation corps, as well as in hardware stores and on a landscape maintenance crew (in sub-zero temperatures). She can back a Kubota with a five-foot plow and a six-foot trailer of rock salt into a seven-foot garage bay. On ice.

 

fire

In Case of Fire, Don’t Be Shy

Let me tell you a story.

I used to work as a dog-walker/cat-sitter/chicken-feeder/iguana-nurse. (I signed up for the dog-walking part, and the rest just happened.)

One day, I was walking one of my favorite dogs, Oliver, and saw smoke coming up out of the ground. It had been unusually hot and dry, and the mulch around a tree was slow-burning underground. For a minute, I blanked, patting my pockets like I might have casually put a fire extinguisher in them that morning. No one else was around. The smoke cloud was getting bigger.

IMG_20130819_120240_972
The burn patches were getting bigger when I took this, and smoke was coming out of the ground for 10 square yards.

Now, I’m not shy with my friends, but I do have some stranger anxiety. I hate knocking on doors, making phone calls, that sort of thing. I especially hate intruding on people in their own natural habitat. But no garden hose immediately presented itself, and by the time a fire truck got there, I was worried that the mulch fire would spread and start destroying property in earnest.

So I ran up and down the block knocking on doors until someone answered and brought out some water.

 

This isn’t a story with some new moral. It’s just a point of demonstration, because when we see other people react a certain way, we’re more likely to do the same in the future. Peer pressure is powerful.

If you see a fire, find a way to put it out. If you see a hate group poster, tear it down. If a public space is covered in broken glass and is dangerous, go get a broom and a paper bag. If you see someone being abusive, start recording them, yell, get help. Do the thing that needs doing. People are basically okay and they’ll back you.

 

Seems like a thing we need reminding of sometimes.

Self-Promotion for Indie Authors: Spam Not Included

So, you wrote a book and it’s out in the world now. You don’t have a Big 5 powerhouse shelling out thousands of dollars to market it, and so, in addition to your classy Author hat, you must wear many others; the ink-stained chapeau of the publisher, the bedazzled manic pixie dream bowler of the public personality, and finally, the logo-emblazoned baseball cap of the promoter.

Shoving your own work in front of people’s faces is hard.

I am no marketing professional, but I have some tips from experience, both as a book promoter and a consumer. Here they are.

  1. Sign Up For Everything. Ideally, you want to exist on Amazon, Goodreads, Twitter, Facebook, Instagram, Tumblr, Snapchat, Bookbub, and anything else you can think of ALL WITH THE SAME USERNAME. Try to check them every day and cross-promote them occasionally. Of course, you also need a website and ideally a blog, which you should post on once a week or so. (Do as I say, not as I do, damn it.)
  2. Connect With People Who Want Your Book. Sorry, but having 50k Twitter followers doesn’t help you if they’re all promotion accounts that only followed you back to up their own follower count. No human on the other end will ever even look at your tweets. You won’t sell books that way; you’ll just look less reputable to anyone who investigates your profile out of genuine interest. Instead, go out and find real people who might be genuinely interested in you. Look for people who like your genre, your personal interests, etc.. Make some new friends.
  3. Spend Your Ad Money Wisely. Some online ads are just a waste. Facebook, for example, doesn’t seem to sell books. Twitter might get a few hits. Goodreads ads are cheaper than dirt, so they might be a good investment if you’re just spending an exploratory $20. Most services that offer “book promotions to thousands of viewers!” are exactly the kind of advertising ouroboros that will do you no good. Bookbub, on the other hand, does actually have a large audience, but it’s not cheap. Ask around to see what various platforms have been like for other authors in your genre.
  4. Nobody Wants Your Spam. You have to advertise, but you don’t have to be obnoxious. Don’t #hashtag #everything #you #do, because while people might check the #SciFi hashtag and see your book (good), nobody checks the #book or #freebook tags. I can prove it; go look at those hashtags on Twitter under the Latest tab. No likes. No comments. Just spam into the void. Likewise, nobody ever sees “#Free #mustread #musthave #western #amreading #amwriting (insert sale link here)” and says to themselves, “Hm, this seems reputable and interesting, I think I’ll buy it.” As a final note, post more than just book links. People lose interest if all you do in advertise to them. I personally set a max of one link, per book, per day, per platform. Don’t forget to tell them what your book is about.
  5. Create Merch And Freebies That People Will Actually Want. Business cards are good, and you should have them, but they are not merch. Even if they’re shaped like a bookmark. You want stuff that people will wear, use, and keep around. Unless you are a band or a beer, nobody wants to wear your name on their shirt or carry it around on their keychain. Cute character art, beautiful cover art, funny quotes, or reading-themed items are much more likely to appeal and persist. See the squeezable hippos for Sarah Gailey’s River of Teeth, the straight-from-the-books stuff from the Discworld Emporium, or even my own “I See Faeries” buttons. Relevant, memorable, and fun, without making anyone feel like a walking billboard. Good times.

I hope this helps, for those of you trying to get the word out about your books without falling into egomaniacal spammer promotional hell. If you have any additional tips, please leave them in the comments.