All The Things That Sizzle

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Summer is now officially here. For the next three-odd months, we’ll have plenty of time for backyard barbecues, fresh locally-grown produce, and oodles of opportunities to get a sunburn. I am one of the lucky ones that gets burned by simply thinking about the sun. For example, just reading an article in National Geographic about solar radiation is enough for me to get a second-degree burn. I wish this wasn’t just hyperbole.

While my pasty, sensitive skin is a major reason why I dislike the summer, the heat we experience in Patterson is the primary source of my disdain. It gets crazy-hot here. And, for someone in a wheelchair like me, it’s just not pleasant. Frankly, it majorly blows. My black-seated electric wheelchair is like a damn beacon for heat— the summer sizzle zeroes down upon me like a missile. You know, like one of those nuclear warheads that Kim Jong Un promises to get rid of but everyone knows that he never will? Yeah, just like that.

The wheelchair also traps heat—once it enters the perimeter of my seat, it just doesn’t fucking leave. It’s like living in one of those Insta-Pot pressure cookers that everyone has been raving about for months. If I’m in my wheelchair out in 100° weather, it won’t be long before my ass turns into a perfectly-cooked pork tenderloin. I wish this was an exaggeration, too.

Despite all my negativity about this season (of which I have a lot, as you can tell!), there are some redeeming things about this time of year. First of all, I like that cold and flu bugs go into hibernation in the summer. As I’m a germaphobe, this is a big relief. I fear getting sick the same way that some people fear a giant asteroid hitting the Earth at 25,000 miles an hour. And, no, I’m not being dramatic. If you’ve been following my writing at all, you shouldn’t be surprised by this statement. So, YAY to summer! It’s definitely wonderful that at this time of year I don’t have to worry about catching the flu while shopping for laundry detergent. It makes the idea of having clean clothes way more enticing.

While this is a major reason I tolerate the heat of the summer, the biggest redeeming factor of this season? All the yummy local produce that becomes available. We are so fortunate to live in one of the most fertile agricultural regions in the world. Our markets burst with wonderful things to eat. So, take advantage of it. Buy locally-grown produce when you can. Visit farmer’s markets. Enjoy all the things that truly put Patterson, and this region, on the map.

It will make these long summer days all the more tolerable.

So, stay cool, stay healthy, and happy summer!

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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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Dimensions, Dictators, and a Whole Lot of Weed

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I’m not going to sugar-coat it, roll it in cinnamon, or top it with frosting. I’m going to be honest. The kind of honest that you usually only see from small children or really elderly relatives— but, rarely see from politicians or men that run around grabbing women by the ass.

Okay, here goes… The year 2017 was… just… straight-up weird. So weird that it made me wonder if we had somehow veered off into a parallel universe. I know you might think I sound loony. But, stick with me for a moment.

Stephen Hawking, the super-genius, theoretical physicist, writes a lot about this concept. He says that black holes could be portals to other countless universes— very much like our own world, but, just a little different. So, there could be infinite planet Earths… countless other cities of Patterson… and many versions of me.

This is a troubling thought. I wonder if all versions of me are as scared of spiders? Or, like pumpkin spice lattes? Or like to drive so fast in their wheelchairs?

I also wonder if all the versions of Patterson have quite as many palm trees? Or, as many pizza places? Because I don’t know if it’s possible for a town to have as many locations to buy pizza as we do right now.

Seriously.

Anyway, what if the Earth was swallowed by a giant, unknown black hole, and we slipped into another dimension? Maybe that would explain why 2017 was so weird… and it would also explain why Patterson suddenly seems to want so many marijuana dispensaries.

Between the record-breaking hurricanes, deadly earthquakes, and massive fires, it could be argued that Mother Nature didn’t care much for 2017, either. Nonetheless, we mustn’t forget the victims of these disasters— many organizations are on the ground now helping those that are affected. Donate time or money, if you can. Don’t be a Scrooge.

It’s important to note that not everyone has had a difficult year, though. North Korea’s Kim Jong Un spent the year honing his missile launching and nuclear skills. After scattering hardware all over the Sea of Japan and threatening the West with death and destruction, he still found time to attack a village of Hobbits with a potato cannon. So, all in all, it was a pretty solid year for dictators. Just ask Vladimir Putin.

We also found out that Americans can become obsessed with solar eclipses— so much so that they will call-in sick to work, and drive hundreds of miles to watch the shrinking sun through a peephole in a modified box of Honey Nut Cheerios. I suspect that many of these same people spent the prior year, 2016, chasing cartoon Pokémon on their smartphones.

So, I suppose this is an improvement.

Scientists made several discoveries this year, too. A new species of orangutan, a close primate cousin to humans, was recently discovered hiding in an isolated forest in Indonesia. It’s been a century since a new species of great ape has been found. So, this is an incredibly exciting— and surprising— development. After all, who knew that Donald Trump wouldn’t be the only new orange-colored primate to burst into the international scene this year?

As we say goodbye to 2017, here’s hoping that the year to come will be a healthy, safe and happy one.

Just watch out for those black holes.

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Summer, Flip Flops, and Tony Danza

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Ugh. As I sit here typing this, the thermometer is registering 95°F. It’s barely May and only 4 days ago I still had flannel sheets on my bed. And now I’m sweating and my jeans are sticking to my ass. Why couldn’t the summer heat arrive gently? Like the slow bloom of a flower… or water dribbling down a clogged drain. Why, instead, does it have to be so blunt and nasty? Like a bull, or Steve Bannon, in a china shop?

I HATE SUMMER! There, I said it. I don’t like the heat, the sun, or even the clothes. I much prefer the styles of the cooler months— my cabinet full of scarves is a testament to that. Plus, I can’t wear most summer clothes, like shorts, because I sunburn in mere minutes. This isn’t dramatic hyperbole. One time I got a sunburned in the time it took to go from the front doors of the shopping mall to my handicapped parking space— which was IN THE FRONT. Yes, I really am that white.

Now that we’re on the subject of summer attire, I also don’t understand flip-flops. They seem unnatural and highly dangerous. Why would you want to walk around on something so unstable? It’s a shoe that’s barely attached to your body. You are one thin plastic strap away from disaster. It’s a good thing that I can’t walk, because if I had to wear flip-flops in the summer, it wouldn’t end well for me. First I’d get a bad sunburn on the top of my foot, then I’d fall and break my nose on the nearest object, like a ficus plant. It would be like an episode of The Three Stooges, only less funny and less Jewish.

If all that weren’t enough, the slapping sound flip-flops make is also decidedly unappealing. Do you intentionally want to sound like a walrus flapping their hands together? Because, I hate to be the one to say it, but you really do sound like that.

Anyway, thankfully I have air conditioning to help me during these trying times. It’s currently humming in a soothing way that reminds me of those noise-canceling machines that they used to sell at Bed, Bath & Beyond next to the display of soda-making kits that NO one ever buys. The same ones that have been on sale since 2005. If you are thinking of buying one, you might want to reconsider; I’m sure those flavored syrup pods expired back during the days when Bush Jr. lived in the White House.

Those were simpler times, though, weren’t they? We didn’t have a president with orange skin and hair… and Michael Jackson and Whitney Houston were still alive— so we could listen to their music without the sad pang of nostalgia. Those also were the days before the word taxi had been replaced by Uber. Before long the nerdy folks at Oxford will just drop that word from their dictionary entirely… and a hundred years from now little children won’t even know what a taxi is, let alone that it was yellow and usually driven by strange foreign men with accents— or Tony Danza.

IMG_3914It’s only May, though, so I better get used to this heat. If you need me, you can find me sitting in front of the fan, grumbling… and not wearing flip-flops.

Shoes, Spiders and The Perks of Being Me

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While it may not seem like it from the outside, there are definite benefits to being me. There are the obvious ones— preferred parking spaces, event seating in the front (should the venue be equipped for it), and being able to get away with first-degree murder because no one will believe that the perky girl in the wheelchair could possibly poison anyone with arsenic.

Aside from these obvious benefits, there are the not-so-obvious ones, too. Like my shoe budget. I rarely have to buy new shoes because each pair I buy will last a ridiculously long time. This is what happens when you don’t go walking around in your shoes. While Nancy Sinatra may have sung “These Boots Are Made For Walkin’,” she clearly wasn’t talking about me. My boots are made for sitting in my wheelchair while I do things like try not to stain them with dribbled spaghetti sauce. (This is a serious concern. My wardrobe is more susceptible to food-spillage than actual wear-and-tear.)

I’m not ashamed to admit that I still have two pairs of shoes from the 8th grade. I am not kidding. As I know that fashion is cyclical, I’m just biding my time until 90’s chunky heels are all the rage again. If acid-washed jeans can make a comeback, so will my Payless black leather loafers.IMG_3794

If you don’t believe me, I’ve taken this picture of my shoe closet. The average age of a pair of shoes in this closet is 9.7 years.

Anyway, being me is not all sunshine and rainbows. It can be challenging when you get an itch you can’t reach or drop something on the floor and you have to wait for someone to pick it up. Patience becomes a daily practice, an endeavor. It’s not an obscure or unknowable concept — like what the hell is really going on with Trump’s hair.

Yesterday, I had such a challenge. While I was on the phone with my aunt, I felt something weird on my neck. Thinking it was just my hair tickling me, I ignored it. A few minutes later, I felt it again. I looked in the mirror and I saw a spider crawling around on my clavicle… like it owned the place.

To say I freaked out would be an understatement. I hate bugs with a deeper passion than I feel for anything else on this Earth. And that is saying a lot because I really hate manbuns.

Nearly dropping the phone, I went to my dad and shrieked, “THEREISASPIDERONMYNECK! GETITOFFNOW!” With exasperated amusement, he flicked off the spider and it smashed on the knee of my pant leg— leaving a stain on the jeans that would be a reminder for the rest of the day of my traumatizing experience.

In his accented voice, my dad then scoffed, “Bah, eet was juust a leetle bug.

This was a total lie to try to make me feel better. But, I was the one that had it crawling around on my neck like a fucking Land Rover on safari. In my mind’s eye, heavily colored by my assorted anxieties, the spider was NOT little. And it never, ever will be.

I guess being me isn’t all fun and games…

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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