How To Survive A Shutdown

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I really wish this was an article about the government shutdown. It would be a lot more satisfying to spend the next 1200-odd words comparing members of Congress to the small, misshapen toadstools you find in the pond next to a toxic waste dump. I mean, they can’t expect us to praise them for failing to do their actual job, right? Last time I checked, if a person couldn’t demonstrate any real skill or talent, they’d get fired. (*This rule doesn’t apply to Kardashians, or other reality television stars— including Donald Trump.)

No, this isn’t about a government shutdown. Rather, this is about another shutdown of a far more frightening sort. The kind that makes your hair turn white and causes you to question your own mortality.

Yes, it’s a wheelchair shutdown.

I have one of those custom motorized wheelchairs— the kind with oodles of special features designed to maximize my comfort, independence and mobility. This thing has a personalized seating system, a reclining feature, and six tires that allow me to turn in a small enough space to fit at least 4 or 5 Olsen twins.

This is handy so that I can get into smaller areas like a bathroom or a pantry— where I can grab a box of Cheez-Its without waiting for someone to do it for me. Anything that makes it easier for me to grab food to stuff into my face is a huge, valued part of my life.

Anyway, these wheelchairs are designed specifically for each patient. From the dimensions of the seating system to the height off the ground— it’s all perfectly designed to me. In fact, even the NASA-inspired honeycomb seat cushion is created to fit my buttocks. It’s like a designer Gucci purse for my ass.

While this may sound extravagant to some, if you had to spend 12 hours a day sitting in one chair, it had better be amazing. Not some piece of shit you bought at a garage sale.

These specialized chairs are not interchangeable. If something goes wrong with my wheelchair, I’m majorly… well… fucked. I can’t borrow a wheelchair to use until mine gets fixed. There’s no Hertz Rent-A-Car for custom wheelchairs.

I think you can sense where I am going with this, right?

A couple of weeks ago, a fault message appeared on the screen of my joystick— “Right Motor Fault.” I had just gotten into my chair and the morning had been bright with promise. I had a caramel vanilla coffee waiting for me and a whole list of things planned for my day. It was going to be GREAT. The kind of day where I accomplished a lot of paperwork— yet still had time to make a pot of chicken noodle soup and watch two or three episodes of The Crown on Netflix. Yeah, it was supposed to be that kind of day.

But, upon seeing that error message on the screen, my mood immediately plummeted. It went from GREAT DAY to… JESUS, MY LIFE IS OVER.

You see, my chair would not move.

Heart pounding, my mind began to race. I turned off the power, let the wheelchair sit for a moment, and took 3 deep breaths so I wouldn’t hyperventilate. Then, I tried the chair again. This time, the motors activated and moved.

While you may think I was ecstatic, relieved, joyous— I decidedly was not. My relief was measured, cautious— for I knew that a motor fault error was a sign of impending doom. Like a meteor heading to Earth or a Black Friday sale at Best Buy. Someone—somewhere— was going to get screwed over by a 60’ LCD television for $180. And that person was me. It was inevitable.

This was the third set of motors I had installed on my wheelchair— even though the chair is less than seven years old. So, I knew all the signs. The cheap toys in a McDonald’s Happy Meal have a longer shelf life than my shitty motors. You’d think that a manufacturer of a beautifully designed wheelchair could manage to put well-engineered motors on it, too. But, no.

I guess we cripples can’t be choosers.

For the next couple of days, the specter of malfunction hung in the air— I knew the motor error would happen again, it was only a matter of time. So, I did what any organized, thoughtful person would do. I called my local wheelchair company to give them a heads-up that sometime in the next week, or so, my life was going to go down the toilet.

Then, I called my doctor to have him fax a prescription for “motorized wheelchair repair” to the aforementioned wheelchair company. Yes, the prescription really does say that. Who knew that prescriptions weren’t only for antibiotics and Lipitor… or, if you’re Bill Cosby, then Quaaludes?

These repair parts take time to come in, so I knew I needed to get the order in pronto. Stat. ¡Muy rápido!

I also knew that there was no way in hell that my current motors were going to last until their replacements arrived.

And, I was right. A few days later, after sporadic functionality, my chair stopped for good. ‘Right Motor Fault’ had won.

I had to be pushed around in my chair like a giant cart of bottled water at Costco. Or one of those pathetic drivers that runs out of gas and gets stranded on a freeway.

I couldn’t do anything.

My life stopped.

You know the old saying that sailors have a potty mouth? Well, even the shadiest pirate in 1790 had nothing on me at this point. I was a bundle of anxiety and curse words. I couldn’t say one sentence without at least two to three versions of the word ‘fuck’ in it. As a verb, adjective, adverb— I’m not sure there was a part of speech I didn’t use.

Then, once I had exhausted myself, I called the local wheelchair company in tears a couple of times. It wasn’t pretty.

Some old smart British dude once said, “Necessity is the mother of invention.” I think anger and rage also are, too. After a hunt in my garage, we found an old set of motors that had been leaky (but functional). So, we swapped the leaky right motor for my dead one and said a prayer to the Broken Wheelchair Gods.

It worked. And the chair continued to work for another week until the new motors arrived from the shitty motor factory in The-City-Shall-Not-Be-Named, Ohio.

But, that week was still pure torture. I’d get up in the morning, get into the chair, and I’d feel my heart rate go up by about 20 points before turning on the joystick. Each time the motor fault error didn’t appear felt like Christmas morning all over again. Not the Christmas morning of recent years (you know, as a boring adult), but the Christmas morning of childhood— when Santa brings you a big box of Legos or a My Little Pony with glittery, purple hair.

Yes, it really was that good.

Now that this current crisis is behind me, though, it means that I must start thinking about the process of getting a new wheelchair sometime soon. Given how precise and perfect the seat and chair must be, you can understand how I might approach this with dread.

I’m sure I’ll be writing about the process in the coming months… so, stay tuned.

Keep your fingers crossed that these motors don’t die first, though.

At the rate I’m going, it’s not looking promising…

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Elizabette Does Tinder

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I like to be hip. I like to be cool. I like knowing the latest lingo, the ‘words on the street’— you know, like baesnatched… and I-Hope-Harvey-Weinstein-Gets-Ebola-And-Dies.

Stuff like that.

I also like to be in-the-know about technology. I want to know about the most recent apps, smartphones and those little fancy robots that run around your house to vacuum up all the Pringles crumbs you left on the floor after your latest Netflix binge. These things are important. And I must know them.

If I don’t know how something works, I feel like I’m missing out— like that one time I wanted a Polly Pocket for Christmas in 1991 and didn’t get it (even though ALL my other friends did). So, this “fear of missing out” leads me to want to try new things. But, this isn’t always a good thing.

For example, a few years ago, I tried watching Game of Thrones. Everyone had been raving about the show… It was a phenomenon unseen since Michael Jackson moonwalked across that stage in 1983 (before he got creepy). So, I borrowed a disc of the first episode of the hit HBO drama, put it in my DVD player, and hit play.

And I lasted about 17.5 minutes before I turned the damn show off.

Holy shit, I have never seen so many decapitations in such a short amount of time.

I mean, I had NO idea what was going on in the plot or who the hell those headless people were, but I had already seen too much of their blood gushing from their spinal column. It’s important to note that I have to be more invested in my characters before I’m willing to see their bodily fluids shooting into the air like the Yellowstone Geyser. And 17.5 minutes is not long enough for that to happen.

Anyway, my experience with Game of Thrones taught me that perhaps all trends aren’t always great. Not all bandwagons are worth climbing on.

The other day, was looking at the App Store on my iPhone looking for a new game to download. Near the top of the most popular list was the social/hookup/friendship/relationship app Tinder. I had heard of Tinder, but really had no idea how it actually worked. My interest was peaked. If it was at the top of the download list, it was worth learning about. I would be one of the cool kids! I would be in-the-know. It would not be like the Polly Pocket incident of 1991.

So, I downloaded the app and set up an account. A person can add a couple photos and write a really brief bio of themselves or their interests. The app then shows you the profile of folks within a 50-mile radius. You swipe to the right if the person seems interesting— you swipe to the left if the person isn’t your cup of tea. If you and another person both swipe to the right, it’s called a “match” and you’re able to type a message to that person (if you want to).

It’s a very simple premise… One quick decision. It’s like cleaning out your closet. Do you want to keep that old Green Day t-shirt, or throw it away? Dump the shirt in the trash? Swipe left. Keep it to see if you might wear it when you need to clean the shower with bleach? Swipe right.

So, I started playing the game. Err— I mean, using the app. It’s very fun and addictive. About 95% of users are trying to impress folks with their gym selfies (why must you stand in front of a mirror each time, dude?)… their sky-diving photos… and their motorcycle portraits. Swipe left. Swipe left. Swipe left.

As fun as it was at first, after a few hours of using the app, I very quickly found myself becoming increasingly judgmental in real life.

At a gas station, I began commenting on someone’s questionable parallel parking ability. Swipe left. Then, I criticized a guy for wearing a baseball cap with the sticker still on the bill. Swipe left. I rolled my eyes when a friend on Facebook used your instead of you’re. Swipe left. At a restaurant, I inwardly cringed at a lady for her unflattering hairstyle. Swipe left.

I was out of control.

I quickly realized that it was Tinder that had turned me into an intolerant and heartless version of myself. If I wasn’t careful, I’d turn into something really horrible. Like an Olsen Twin.

Enough was enough. So, after having the app on my phone for a grand total of 47 hours, I deleted it.

There are some trends that just aren’t worth it.

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A Stanford Valentine

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On a typical Valentine’s Day, one might expect a day of romantic gestures— giant teddy bears, Papa Murphy’s heart-shaped pizzas, and overpriced jewelry from the neighborhood mall. Since my boyfriend is of the fictional variety, I don’t have to worry about pretending to like the “chocolate diamond” necklace he bought for me at Zales.

This week, my Valentine’s Day definitely wasn’t a typical one— I got to spend the most romantic day of the year at the Stanford Neuroscience Building for my Spinraza evaluation. Upon arriving, we proceeded to not be able to find any handicapped parking in the garage. This is the irony of going to a place where a good number of the patients are crippled just like you. Handicapped parking becomes a valued and scarce commodity— like Stradivarius violins, raw uranium ore, and politicians with integrity.

The first item on the agenda was a lumbar spine CT-scan. Spinraza has to be administered into the spinal fluid, so the neuromuscular doctors need to verify that there is a pathway available in the lumbar region for their mega-pointy needle. For folks like me who have scoliosis and spinal rod fusions as a result of our Spinal Muscular Atrophy (SMA), this isn’t an easy task. You know Pin The Tail On The Donkey? Imagine playing that, blindfolded, with a donkey that has anatomy that closely resembles the tornado from Wizard of Oz. Try to pin the tail on that donkey’s ass and you might hit Glinda the Good Witch instead.

Anyway, after my lumbar CT-scan, I went to see the team of specialists. After taking my vitals, the first thing they wanted to do was find out my weight. This was not as simple as it sounds.

If Elizabette’s wheelchair weighs X pounds without her sitting in it, and it weighs Y pounds when she is sitting in it, how much does Elizabette weigh?

This problem would have been easy if I had known my wheelchair’s weight without me sitting it in— aka, the tare weight. Which, of course, I didn’t. So, we had to do it the hard way. But, I am now pleased to report that the tare weight of my wheelchair is 377 pounds— this does not include me and my backpack full of random stuff. That’s super heavy. Therefore, I’d like to apologize, in advance, if I ever accidentally run over your foot. Or, even purposefully— which I might do if you’ve pissed me off enough.

Anyway, after that was completed, I met with two neurologists, a few nurses, a physical therapist, a respiratory therapist, a blood-draw technician and a circus juggler. (Okay, I might have made that last one up.)

Everyone seemed professional and I was encouraged by their thoroughness. Although, the physical therapist and respiratory therapist were kinda bossy— in a good way that brings out my competitive nature. If anything is turned into a game or a test of skill, I will win, goddamnit.

They tested my pulmonary functions and my physical strength using an assortment of cool gadgets. These will be the benchmarks they will use to measure potential progress moving forward.

All in all, it was a tremendously long, but encouraging, day. The preliminary lumbar CT-scan radiology report indicates that I have a potential open spot on my L5 vertebrae, which is a promising sign. I also learned that the radiologist thinks I have a really big bladder. This is not surprising. I can comfortably go quite a long time without peeing. I suspect that my bladder can currently hold more water than the Oroville Dam.

I’m grateful to the family that joined me on the trip to Stanford and fed me peanut butter and jelly sandwiches. An influx of sugar makes anything more tolerable. If everything falls into place, I’ll try to get Spinraza. It’s still a long journey ahead and I have lots of hoops to jump (or wheel) through, but I’m on my way!

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The Day After: A Digital Reckoning

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The frenzy of a newsfeed. The thrill of an iPhone screen full of notifications. Getting the news AS IT HAPPENS. Arguing with a random stranger online over an issue that both of you probably don’t know enough about as you should.

In this world of digital immediacy, we live life in a moment, within a tweet and a text message. This adrenaline rush is intoxicating, addictive and damn fun. I mean REALLY fun. Who doesn’t want to feel like the entire world is within the small coveted device that we can’t seem to pry from our hands?

But, like all addictions, we seem to need more and more. We click “share” without much thought, without verifying the truth of the statements we send out into the world in our name. And in this digital world, it can be hard to separate fact from fiction. But, we don’t seem to care. If we believe it to be true, than it is. Facts and accountability have no place here.

Some say the media is to blame, and that may be partly true. But, the media can’t sell their product to an unwilling audience. And we’ve all been oh-so willing. From Huffington Post to Breitbart… from FoxNews to MSNBC, they have all been guilty of giving the biased viewpoints that we long to hear. This is not because they are necessarily trying to sway us, but because they want to please us— their customers. As the old adage goes, “The customer is always right.” And they want us coming back for more… and more.

But, we have seemed to be okay with that. Frankly, in the last months, we’ve relished in it. Reveled in it. Every opinion can be justified with a “fact” that we find on our little miracle devices. Making us feel vindicated. Making us feel heard.

But, really, who is hearing us? The select few with which we choose to associate? The like-minded folks and trolls that haunt the comments section of the specific sites where we collect our news? Who’s to blame for the memes that make us laugh in glee to cover the meanness and spite that we try to hide from view?

In this new world, we all do this— Republican and Democrat, Liberal and Conservative. And, for the sake of all of us, it needs to stop. This horrendous election season has taught us that… taught us what can happen when these habits run amok. These hellish months are the result of our own collective hubris. The idea that our reality is the only reality.

So, what are we going to do about it? It starts with each of us. We have a choice to make. Can we disconnect from the opiate, digital stew that dulls our senses and makes it harder to see what is true… what is fair… what is just?

Can we do that?

Can we?