The Great American Taco Challenge, Part Dos

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It is no secret that I adore tacos more than most foods on this earth. I have definitive opinions about them and I’ve eaten them in various cities and places. And, while I might be biased, I firmly believe that in Patterson, we’ve got some of the best tacos— anywhere. In fact, I’d be willing to stack our hometown tacos against any big city taco joints. I don’t care how fancy or hipster those other places may be.

This is why, five years ago, my high school friends and I conducted The Great American Taco Challenge by sampling some local taco spots. The results were published in my column in The Patterson Irrigator. Never before had tacos been examined with such scrutiny and, frankly, love. In fact, each time we’ve seen each other since, my friends and I talk about that day and how much carne asada we managed to consume. It was glorious.

So, this last Saturday, we decided to do it again. Given the large number of taco joints in Patterson and the fact that our stomachs can only hold so many corn tortillas, we had to limit our sampling to just six— Taqueira Zamora, Morelia’s, Taqueira Barajas, El Paisa, El Portal, and Ernie’s Taqueira. Believe me, if we could have eaten from more places, we would have. But, my cardiologist said no.

We sampled them blindly— meaning we wrote the names under the plates, mixed them up, and didn’t reveal the origins until after the tasting and scoring was complete. We judged the tacos on flavor, spice, texture, tortilla quality, and even presentation (yes, we watch The Food Network!).

I’d like to tell you that this was an easy process. But, this time it was much harder to judge the tacos than it was five years ago. The taco scene in Patterson is truly at a high level. As we sat around my dining room table, a slight sheen of sweat tickled our brows. And it wasn’t just because the tacos were spicy. It was because selecting the winner was nearly impossible.

In fact, it got to the point where we felt like parents being forced to choose a favorite child. Everyone knows this is a painful and treacherous thing to do. Unless you are Donald Trump, of course. Because, then, it’s Ivanka.

We nearly abandoned the whole enterprise because the margin between each taco score was so slim. Mere decimals separated them, and we even tried computing the results in different ways to make sure we were correct. But, this had a Vladimir-Putin-Election-Rigging feeling to it, so we stopped.

In a straight average, El Portal’s “juicy” taco edged out a win over Taqueira Zamora’s “meaty and smoky” taco by a minuscule 0.37. An even smaller margin separated the other establishments— which were huddled evenly together in the rankings. It was like a photo finish in the Olympics— where you can’t tell if the guy from Barbados, Ghana, Jamaica or Cleveland had his toe over the line first.

In fact, each sampling had something of note about it. Ernie’s Taqueira took the award for “spiciest taco,” while El Paisa had the “best corn tortilla.” Morelia’s included some of their amazing homemade chips in the order, which was like getting a surprise from Santa Claus. And, lastly, the presentation of the plate from Taqueira Barajas was so beautiful that it should have been featured in a food magazine. Seriously, it was so pretty. Those hipsters can just kiss our ass.

To be honest, it was a great day to be eating tacos in Patterson. And these were just a small sampling of what this town has to offer. I do apologize if we didn’t make it over to your particular taco establishment, though. This doesn’t mean that we don’t like your tacos, only that my arteries can only handle so many at one time.

My cardiologist thanks you for your forgiveness.

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After Hawking

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The downside of my celebrity is that I cannot go anywhere in the world without being recognized… The wheelchair gives me away.
— Stephen Hawking (1942-2018)

The passing of theoretical physicist & cosmologist Professor Stephen Hawking earlier this week leaves a big, gaping hole in the scientific world. A black hole, surely, of infinite size, depth and velocity— so powerful that probably only Dr. Hawking, himself, could describe it. I won’t pretend to attempt it because my scientific knowledge is limited to shit I’ve read in National Geographic Magazine. And random stuff I’ve Googled on Wikipedia.

So, yeah, I’m not very sciencey.

Professor Hawking was also probably the most famous person in the world that happened to use a wheelchair. A real-life Professor Xavier from X-Men… only with glasses and a better haircut.

For the majority of his life, Dr. Hawking had ALS— a progressive motor neuron disease. Due to advancing medical science, and the top-notch home care he had available to him, Professor Hawking’s lifespan exceeded that of many others with ALS. (Which speaks to the importance of self-managed home care for those with disabilities and why it should be more readily available— and covered!)

His life was even the subject of the 2014 biopic, The Theory of Everything, starring Eddie Redmayne. Eddie won the Academy Award for his portrayal of Hawking, which was not surprising because everyone knows that the best way to win an Oscar is to play a disabled character. Of course, the caveat being that the actor, himself, can’t—under any circumstances— be disabled in real life. Because that would be stupid.

I thought the movie was fairly decent up until the end… when a brief scene actually made me yell aloud in disbelief: “As if!”

While at a lecture to receive an award for his many, many achievements, the filmmakers inserted a moment where Professor Hawking witnesses a student at the lecture dropping a pen. The writers have Hawking daydream that he can stand up out of his wheelchair and pick it up.

Really??

A man that thinks in fucking lightyears and units of measure that literally NO ONE ELSE UNDERSTANDS is going to pause while receiving an award, to muse, “Gee. Screw science and my accomplishments. If only I could pick up this pen…

I call bullshit.

But, you see, that’s what society would believe that he’d be thinking. Because to be seriously disabled is so scary to most people that they can’t even fathom it. To someone able-bodied, of course, Hawking would yearn to pick up that pen. But, in reality, he probably was thinking nothing of the kind.

As someone disabled, I can honestly say I’ve never seen someone drop a pen, and then lament, “Gosh, my life would have SO much more meaning if I could pick up that pen off the floor.

Anyway, I seem to have digressed.

In the days since Professor Hawking’s passing, the internet has been awash with obituaries and tributes to him. His scientific achievements merit such accolades, that’s without question. While many of these tributes are extremely well-meaning, they miss a key element of the man that was Stephen Hawking…

He achieved everything he did with his disability, not despite it.

Stephen Hawking didn’t overcome his disability. He lived with it— achieving great things in the process. His infamous wheelchair wasn’t a trap, or a road block… it was a vital tool of life.

I’ve seen several cartoons and graphics circling the internet this week, showing Hawking drifting out of his wheelchair to stand and walk among the stars. Implying freedom. That he’s free from his wheelchair now. Free from the bounds of his disability.

Many seem to find this touching. Which is why these images have been shared thousands of times. But, when I see that, it makes my gut clench.

No matter how much Stephen Hawking had accomplished in his life, his story wasn’t complete without this magical metamorphosis. Floating free from his bonds to stand upright. To walk among the cosmos on two working legs. Because, heaven forbid anyone drive a wheelchair through the stars, instead.

While I’m not anywhere close to Hawking’s genius and epic achievements (by lightyears), as a disabled person, I’ve got a few things in common with him. His passing, and the response to it, has made me reflect upon what others may think about me.

When I die, will people think that I’m free? That I no longer have my wheelchair and disability to bind me?… burden me?… hold me back? Has my life boiled down to that?

I can say one thing for certain. If you draw a cartoon tribute of me floating out of my wheelchair after I die… or say that I’m “free now”… I will personally haunt you until the end of your able-bodied days. Not a cute haunting, either. A really annoying one where you hear whispers of “Fuck you” whilst you drift off to sleep. You’ll also never find your favorite pair of socks and your coffeemaker will always seem to malfunction when you are tired and/or hungover.

You will RUE. THE. DAY.

In fact, if it were theoretically possible, I’d come back to life, like Jesus Christ, just so that I might run you over with my wheelchair. Yes, I would definitely do that. Resurrection is a small price to pay for revenge.

So, your best bet? Don’t be comforted by thoughts that I’m “free.” Rather, please be sad that I’m dead. Okay?

Something tells me that Stephen Hawking would agree with me.

xoxo

Stephen Hawking NASA 50th

(photo via NASA)
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Alexa Saves The Day

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When you’re disabled like me, technology is interwoven into the very tapestry of our everyday lives. While most folks can’t set aside their addictive iPhones long enough to take a shit, at least those devices aren’t hinges of mobility. Tools of survival.

In order to fully function, our gadgets must be in complete synchronicity… like an orchestra playing well in tune. If one instrument goes awry, the whole concert could be a total flop. Like Lady-Friendly Doritos or Kevin Spacey’s career.

I’m not a novice when it comes to technology fails. Just weeks ago, I grappled with a wheelchair shutdown that, while eventually resolved, led me to have anxiety for nearly a fortnight. I’m glad to have that behind me, but the delicate balance of our disabled, gadget-rich lives always teeters on the edge of the precarious.

This morning I had one of those moments. When the balance shifted decidedly out of my favor. It was an ordinary day and I was doing ordinary things. Drinking my late-morning coffee. Attending to various tasks. When suddenly, the perfect storm happened.

My dominant arm, which I use to support myself, fell out of place on the armrest. This, in turn, caused my chest to topple forward and my neck to get thrust down. Often, I’m able to extract myself from the situation with various wheelchair maneuvers. Like gunning the throttle to thrust my body backwards. Or, shoving my chest up against a table. But, this time it all went spectacularly wrong.

When I attempted to push my chest backward against a high table, my arm slipped further and activated my wheelchair’s tilt seating system so that it lowered and pinned me against the table. Unfortunately, my arm was stuck on the tilt button, keeping it activated and running, even though it was fully lowered. When the tilt is activated, the wheelchair is immovable, meaning the control box was useless. Meaning I couldn’t reverse myself to reach the iPhone that was resting on my lap. Meaning that I couldn’t text or call for help.

I was well and truly fucked.

I began to panic as the seconds ticked by… and the seating tilt motor ground forward in an endless mechanized rhythm. I couldn’t get it to stop. I knew that if it continued for an extended period of time, I could burn out the electronics.

While you might think that I was most concerned about my own current discomfort, no… alas… I was thinking about my wheelchair. And how disastrous it would be if the tilt system went kaput.

The panic grew overwhelming, and my breathing grew labored in the awkward, cramped position I was in.

Although I was currently alone, I knew someone would be popping in within the next hour. But, I didn’t think my panic or my seating system tilt mechanism would last that long.

All sorts of crazy thoughts were accelerating through my head like a runaway locomotive… or those commuter trains that always seem to be derailing in movies starring Denzel Washington.

How long will I have to wait here?

How much would a new tilt cost?

Will the insurance pay for it?

Will it take weeks to be fixed?

What if I panic and die?

What if I panic and die while Donald Trump is still President?!?

I was a righteous mess. I tried to calm myself. Stop the pounding heartbeat I could hear inside of my head.

And then, I remembered it.

ALEXA!

My Amazon Echo Dot (similar to the Google Home Mini) was perched 8 feet away. It had been given to me by NMD United, a peer-run non-profit organization that serves adults with neuromuscular disabilities. It’s voice-activated tools are extra helpful to those of us with mobility issues.

It’s always just waiting to do helpful things… like tell me the weather forecast, play me songs by Katy Perry… or… call people for me!

I called out, “Alexa, call someone!

She replied, “Who do you want to call?

I began to grow irritated, “I don’t care!”

Donna Karan is not in your address book.

ARGH!

I pulled myself together, “Alexa, call 2, 0, 9, 6…..

After a pause, she asked, “Would you like me to call Daddy Cell?

Yes!!!” I exploded.

When the Echo Dot began to ring and I heard my dad’s voice answer, I collapsed against the countertop in relief. I think I even drooled a little.

I’m thankful to say that my dad arrived before any noticeable damage was made to my wheelchair. Although, perhaps time will tell on that front. Luckily, even though it felt like an eternity on my end, I think the entire episode only lasted about 10 minutes. And I’m doing A-OK now.

Technology is a fickle, fickle business. And our hold on it is incredibly tenuous. But, sometimes, when one aspect fails, another may save the day.

Thanks to Alexa.

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Test Anxiety

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No one likes tests. Whether they’re in school, at the doctor, or at the DMV— they are generally un-fun. You rarely hear someone yell, “Yay, a test! I’m SO happy.” If a person did say that, you’d probably question their mental stability.

For a lot of folks, tests bring out an anxiety— a stress to perform well, which, ironically, is made harder by the stress itself. It’s a terrible Catch-22.

I have to do well on this test or I’ll never go to college!

I have to pass this exam or I can’t get my license!

Will that marijuana I smoked a month ago show up on this urine test!?

As a worrywart, high-achieving student, I generally would experience some anxiety before tests, especially the big exams— like the AP test, the LSAT, and all those personality tests on the internet. I’d fret for days beforehand, wondering how it would all turn out. Would I score well enough on the LSAT to get into law school?… Would the online test sort me into Hufflepuff or, worse yet, Slytherin House?!

These thoughts would consume me.

It shouldn’t be surprising that when it was time for me to have another evaluation to check my progress on Spinraza, I worried about it. A lot.

While I had felt positive changes, and experienced measurable improvements previously, would it still translate to results this time?

It was a question that loomed over me… like the Hindenburg right before it exploded.

I’m sure reading this, you’re probably thinking, “Girl, calm down. Don’t stress. Just do the best you can.

I wish it were that simple. Given the high price tag associated with nusinersen treatments, there are many insurances and government agencies that are looking to limit who has access to the drug. They want to put parameters on who can get it and who can’t. And a major factor they are looking at is age.

As an adult in my thirties with Spinal Muscular Atrophy, I am considered old. Not old in the way that Betty White is old, but at least old in a moderate way… like Jane Fonda or Donald Trump.

While there aren’t THAT many of us that have lived this long with SMA, there are still plenty of us adults out there that need access to this drug. So, we have to continue to prove that this treatment works for adults. That it produces results.

That’s a lot of pressure. Especially for something that a person can only do SO much about. I can do stretching, breathing exercises, and increase my protein to help things along, but that’s about it. I mainly have to see if the magical Spinraza droplets do their work.

Leading up to my evaluation at Stanford earlier this week, I was very anxious about it. On the drive over, I listened to the Spinraza mixed CD I had made and tried to gear myself up. It worked pretty well… after all, track #2, Eye of the Tiger, is always a solid choice.

Upon arrival to the Neuroscience Center, I only had time to inhale half of a tuna sandwich before they called me back to begin my evaluation. The next three SOLID hours passed in a blur of respiratory and physical therapists, nurses, research assistants, and stress sweat (good thing I put on extra deodorant!).

I wasn’t finished with one test before another person was hovering nearby to begin the next. I didn’t even have time to eat my homemade graham cracker and peanut butter sandwiches. (And you know how much I love peanut butter!)

The grueling afternoon reached its peak when the physical therapist asked me to open up one of those clear round Ziploc containers with the blue lid. Previously, I hadn’t even been able to attempt this task. Not even close. But, this time, I felt that I might be able to do it. I pulled, groaned, heaved, and nearly cried. But, after five minutes of desperately trying (and nearly doing it), I ran out of steam. I felt defeated. And pissed off. I told the PT, “I’m gonna buy one of these fucking containers and practice this at home. Next time, I will do this.

Yeah, I’m that kind of person.

While that moment was very disheartening, I’m happy to say that my results showed some improvements. I was able to lift a cup with a weight inside all the way up to my mouth. The strength in my arms and hands increased. And, lastly, but most awesomely, there’s a respiratory test that measures the diaphragm muscle. Before Spinraza, I got a 50. At this evaluation, I got a 72.

By the time all of this was done, I was exhausted. I wanted to curl up in bed with hot chocolate and watch TV forever. All the shows. Even the stupid ones on Bravo… Like The Real Housewives of Beverly Hills.

Thankfully, I get a little break now. I don’t have to head back to Stanford until next month for dose #6. I’m looking forward to the respite… and the break from all these tests.

Although, if I get bored, I’m sure there is a personality test online I can find. Like… If you were a dog, what breed would you be?

A border collie. Definitely.

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