Thanks & Giving

(originally appeared in The Patterson Irrigator)

It’s Thanksgiving. The time of year when Americans devote much of our energy into thinking about the varieties, types and quantities of foods we’re going to cram inside our bodies on a Thursday afternoon. We watch cooking shows, flip through old family recipes, and buy more stuff at the grocery store than we could possibly need or consume— like greedy squirrels hoarding nuts stolen from other (more hard-working) squirrels.

So, yeah, it’s the quintessential American holiday.

When we’re not eating, or watching overpaid NFL players run around in Spandex, we should pause to be thankful. The holiday isn’t just about how many cranberries your nephew can stuff inside his nose before you have to take him to Urgent Care. It’s about more than that. We must also appreciate the community we live in, the country that supports our rights, and the duty we all hold in safeguarding these rights for everyone. For example, it would probably be pretty handy if your nephew had health insurance that would cover cranberry extractions.

While much focus is given to the “thanks” part of this holiday, I’d like to highlight the “giving” part, too. There can’t be one without the other. Thanks can’t be without Giving. Bert can’t be without Ernie. And Rudy Giuliani can’t be without an Indictment.

The Tuesday after Thanksgiving is known as “Giving Tuesday.” It’s a day that charities and non-profits aim to generate support and donations for their causes. Giving Tuesday is especially important to local or smaller charities. Those are often overlooked for the big non-profits with the flashy marketing budgets that allow them to send me free return address labels with my name wrongly spelled as Elizabeth Guacamoo.

So, this year, I invite you to put down those cranberries and to celebrate Giving Tuesday. Support a local, Patterson-area organization that does good works in our community— like the Patterson Volunteer Firefighters Association or the Westside Food Pantry. There are many local groups to choose from. Or, if there is a specific cause you care about, find a grassroots organization that is making a difference for everyday people on the ground— not just the big non-profit conglomerates sending you free personalized Post-It notes with smiley faces.

If you’re unsure where to donate this Giving Tuesday, check out the website: www.charitynavigator.org

The acclaimed site has a wealth of information about countless non-profits and charities. It’s a good way to screen organizations and also to learn more about causes and missions you care about.

In the meantime, I wish you, and yours, a healthy and happy holiday. I hope it’s full of squirreled nuts, squishy cranberries, and lots of football commercials.

And, maybe, just maybe, if we all work together, Giving Tuesday doesn’t just have to come once a year.

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Quarantines, Clipboards & Spinraza #8

I’ve made it no secret that I am abhorrently afraid of cold & flu season. When you have SMA and your respiratory system is total shit, even a simple cold can turn nasty. You know the way a mother’s ear may alert to the sound of a crying child? My ears instead perk to the sound of a cough, a sneeze, and the tiniest sniffle. I can even detect the slightest change in the tenor of a person’s voice that may indicate secret congestion. I don’t mean to brag (okay, maybe I do), but I am the Sherlock Holmes of Cootie-Detectors. I’m so damn good at it that I may know you are getting sick before you do.

When I was scheduled for my 8th dose of Spinraza, I knew that I was entering a dangerous portion of the cootie-season. The post-Thanksgiving/pre-Christmas cornucopia of Microbial Abundance. So, I knew that this year I was going to have to employ every germ-avoiding tactic in my arsenal so that I could receive my Spinraza treatment on-schedule and unimpeded.

Thus, about 10 days before my injection, I announced to EVERYONE THAT I KNEW that I was going into quarantine. Literally everyone. Even the mailman knew that he had better not sneeze on my Christmas cards.

I became a certifiable hermit. I turned down invitations to holiday gatherings. I avoided crowds and eating food that wasn’t prepared at home. I threw away all my romaine lettuce.

The more isolated I became, the more I felt myself turning into one of those wingnuts that sits in their house and angrily begins to believe conspiracy theories that they read on the internet. That the Moon Landing was a hoax… that Barack Obama was born in Kenya… that Donald Trump’s hair is actually grown on his head.

The bitterness became real. And the further I got into my self-imposed exile, the more my anxiety grew about someone breaching my quarantine and infecting me. I knew that if that happened, I was truly inches away from turning into the actual Unabomber. Like I would send a bomb to that person’s house and curse their familial line for 46 generations.

As my procedure day approached, I became more and more tense. Xanax wasn’t quite covering the heights of my nervousness. My left hand began to twitch. Hallmark Christmas movies even stopped having their sedative effect on me.

I simply COULD. NOT. GET. SICK.

It was a horrendous amount of pressure. It consumed me. So, when the magical day arrived, and I woke up at 3:00am feeling okay, I nearly cried with relief.

And then I remembered that my reward was having a five-inch needle poked into my spine.

Strangely, this thought didn’t scare me as much as getting sick did. I think that speaks volumes to the depths of my emotional neuroses… and how bad Hallmark Christmas movies really are.

By the time I arrived to the Neuroscience Center, I was actually calmer than I had been in days. After being settled in my room before the procedure, the resident doctor performing the ‘needle poke’ came to introduce himself. As it’s a teaching hospital, there are different teams of doctors— one resident & one attending. You never know who you will have until the day of the procedure. It’s like playing roulette… but with your spinal canal.

Right away, I had a good feeling about the new doctor. He seemed competent and excited— which jived with my mood of the day. I also sensed his competitive nature when he asked:

“So… uhh…how long did it take them to do this procedure last time?”

While this may seem an innocent question, as a competitive person, myself, I instantly recognized the subtext to his question. What he really meant was the following:

“I want to do this better and faster than last time. I will win this game.”

And, I must say, the guy did deliver. He had the needle in my back so quickly, that I didn’t have time to begin daydreaming about lunch (my favorite way to pass the time). The whole procedure was done in thirty minutes.

As he removed the giant needle, the panicked mania of the past days all seemed worth it to have Spinraza floating in my cerebral spinal fluid like magic minions. But, as exciting as it was, I was ready to go home. To get the hell out of there. I was spent. It had been a tough week trying to not turn into a domestic terrorist.

Just as I was about to get ready to leave, though, a research fellow came into the room with a clipboard. He cheerfully asked, “I’ve got a few questions for you.”

A little voice in my head whimpered, “Oh, fuck.”

A clipboard is never a good sign. If there are enough papers to warrant a clipboard to hold them, that’s too many papers.

I gazed longingly at my wheelchair and wished I was sitting in it instead of the hospital bed. It would be so much easier to zoom away from this man and his clipboard. But, then my conscience reared up and decided that I needed to be the scientifically-responsible person and submit to the questions.

This was a big mistake.

The questions went on. And on. And on.

He asked me questions that I had already answered on previous appointments. Questions that should have already been in their records.

I began to resent his perky face and his clipboard. And his inability to read my medical records. My mind began to race— does anyone take the time to read anything anymore?? Do they??

The minutes ticked by. Finally, he said, “Well, I think that’s it.”

I sighed with relief and gazed at the clock. His survey had literally taken longer than my entire procedure.

Paper rustled on the clipboard, “Oh, wait, I’m missing a page!”

If I could have physically banged my head on the wall in that moment, I would have done so.

“Just a second…”

He located the paper and rattled off a few more questions. I would totally tell you what the questions were but, honestly, I wasn’t even listening by this point. He was like the teacher in Charlie Brown— all sounds, but no actual words.

When he finally went away, my nurse came back in, “My goodness, I thought that was never going to end.”

I burst out, “I know, right??? Holy crap.”

She clapped her hands together, “Let’s get you out of here, shall we?”

“Yes, please. I’ve got some Hallmark Christmas movies to watch.”

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Dimensions, Dictators, and a Whole Lot of Weed

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.

A Germaphobe’s Guide to the Holidays

I love everything about the holidays. The music. The food. The carbs. The festive spirit that makes even the dumbest Hallmark movie seem quaint and charming. While I eschew The Hallmark Channel for the other 11 months of the year, for these few weeks, I tolerate the weak plot lines, terrible acting, and the tons of synthetic snow they import from China. I suspend my cynicism and convince myself that this stuff is A-OK— you know, just like Matt Lauer did with his overactive penis.

Anyway, while this season heralds many wonderful things (the extended holiday selection at Starbucks being one of my particular favorites), not everything about this time of year is so great. Yes, I’m talking about all the cold & flu viral cooties that float around faster than Hallmark’s plastic snowflakes. For the average person, this is only a minor annoyance. Perhaps some sniffles here and there, and odd sick day from work. Nothing that Tylenol Cold and a shot of whiskey can’t handle.

But, for someone with spinal muscular atrophy, like me, a minor cold can turn into fucking Armageddon. Like the kind with Bruce Willis and that damn asteroid. Or the kind that wipes out all the dinosaurs on Earth—except for Barney… and Larry King.

So, to call me a germaphobe would be a vast understatement. It would be like calling Einstein merely ‘clever’ or saying that Donald Trump just ‘somewhat likes’ using hairspray.

I am a full-fledged germ freak. If I hear someone cough or sneeze, my ears suddenly morph into the radar of a Navy submarine. I quickly determine the distance between me and the sick person, and if I need to undertake any evasive maneuvers like Sean Connery in The Hunt for Red October. I will burrow into the ocean floor if need be. Don’t think I won’t.

If they’ve done something especially stupid, like cough directly into their own hand (instead of the crook of their elbow), I’ll glare at them maliciously while I catalogue every surface that they touch with their virus-ridden hand.

Yes, I really am that bad.

And, yes, it really is stupid to cough or sneeze into your own hand. You should always cover your face with your arm, instead. Less chance of spreading the virus to others.

Anyway, given the respiratory weakness of those with SMA, it is very difficult for us to keep our lungs clear. It is harder for us to cough. Harder for us to blow our nose. So, the drainage that might only be an annoyance to you, can become dangerous to a person like me. It can settle in our chest and potentially cause serious issues.

If I do get sick, I have to be very diligent. I vigorously use my respiratory devices (BiPAP, nebulizer, and CoughAssist) to prevent any complications. Under the best of circumstances, it can take me at least 10 days to 2 weeks to get over a mild cold. More serious illnesses can knock me out for even longer.

As happy and joyful as the holiday season is for me, it can be difficult, too. To the average person, an invite to a holiday cocktail party is immediately accepted. After all, who doesn’t like eggnog and a free selection of crackers and salami?

But, for me, deciding to attend the party would be a gamble. Like playing Russian Roulette or marrying a Kennedy. As much as I love eggnog (which, I do!), I must weigh that against the fact that at least one or two dipshits will probably attend the party even though they are sick and should stay home. Do I want to risk that they won’t sneeze near the salami? Do they know how to properly wash their hands?? What if they actually try to hug me???

Oh, the horror.

This kind of analysis runs through my head with every holiday invite that I receive. Before accepting anything, I quickly consult my calendar to make sure I have nothing important to do for the following two weeks after the event on the off-chance that some fuckhead gets me sick.

You can imagine why it might be easier for me to sit at home this time of year and watch badly-written Hallmark movies, instead. Fake snowstorms are far more palatable than hacking up part of a lung.

Nonetheless, it also isn’t healthy for a person to hide away in their house like the Unabomber. So, I try to venture out from time to time… armed with plenty of Purell, of course.

But, if I turn down an invite to your holiday event, please don’t take it personally. This doesn’t mean that I don’t like you, or that I hate salami… or eggnog. It just might mean that I’m worried your other guests might be carriers of the bubonic plague or some other horrible disease.

So, yeah… nothing personal.

Happy Holidays to you all!

xo ears2

Nutcrackers, Holiday Decorating & All The Lies We Tell

Around three weeks ago, I was in a store and holiday music was already playing. Even though I snorted in disgust at the prematurity of it all, that didn’t stop me from admiring a collection of miniature Christmas trees roughly the size of Kevin Hart. You’ll be happy to note that I didn’t buy one, but I seriously considered it.

That set my mind into motion— into thinking about the holidays and when I’d put up my own decorations this year. I always tell myself that I’m going to wait until after Thanksgiving, but that never seems to happen. It’s more what I tell other people if they ask me when I put up my Christmas decorations. I always chirp, “Oh, I wait until after Thanksgiving.” But, in reality, I’m secretly hunkering down in my house around November 15th with empty nutcracker boxes strewn all over my dining room table and a rim of peppermint mocha residue around my lips.

It’s one of those secrets that we all keep and then lie to others about. You know, like how many times a day we floss (which is never), how many times a week we empty the lint compartment in the dryer (which is not enough) and if we wash our hands after we blow our nose (which should be all the time, but never is!).

When you are disabled, like me, you have to rely on others to help you put up your Christmas tree. You have to cajole and charm someone into climbing into the recesses of your garage to pull out the 7.5 foot plastic tree crammed in a cardboard box large enough for Kim Jong Un to stuff at least two dead bodies.

I’ve had the same artificial tree for quite a few years now. I don’t like having a real tree. It’s too much commitment. I have a hard enough time remembering to water my two houseplants, I definitely don’t have time to attend to a needy spruce tree. Plus, I don’t want something that will drop needles and crap all over my living room floor. If I wanted that, I’d just borrow a toddler.

Each year, there’s always a big moment of dread right before turning on the Christmas tree lights for the first time. That sinking feeling of wondering if this will be the year that it finally takes a giant poop. I’m sure I don’t need to describe this feeling any further. After all, if you’re a San Francisco 49ers fan, you feel this nearly every week.

Anyway, the last couple of seasons, my tree had begun to show its age. The lights began to dim, and large segments of the tree would randomly go dark, only to perk up again hours later. So, this week, I decided to take the plunge and get a new one. My new tree seems okay so far, but the branches were so smashed from being in the box on the long journey from China that the branches required considerable fluffing to stop them from resembling large marijuana joints. I suppose that’s one benefit to real trees, though— they are already fluffy.

However you may spend this holiday weekend, have a safe and happy one. If you need me, I’ll be here fluffing my tree, consuming large quantities of stuffing, and canoodling with my nutcrackers.

IMG_4507 (2) Happy Thanksgiving!

The Surreality of 2016

As I sit at my keyboard, I try to think of a word to encapsulate the year 2016. I do my best thinking while consuming coffee or sugary dairy products, so I had decided to combine the two and make a homemade eggnog latte.

Before I continue, I’m fully aware that eggnog can be controversial. It’s something that people either love or really, really hate. Much like Hillary Clinton. There’s no middle ground. But I’m one of those people that adores eggnog. I don’t care if my cholesterol takes a 15-point hike during the holidays, I’m still gonna drink it.

Sipping my beverage, I find out that dictionary tycoon Merriam-Webster already announced its Word of the Year – “surreal.” An adjective, it describes something “marked by the intense irrational reality of a dream.” From happenings in politics, sports and culture, to local news around Patterson, it seems like an apt summation of 2016.

In national politics, we began the year with roughly 14 presidential candidates from the two major parties – among them former governors, U.S. senators and even a brain surgeon. Yet, of all those candidates, the eventual winner was a wealthy former reality television star with a questionable haircut.

The Olympic and Paralympic Games were the sport highlights of 2016. When the world descended upon Rio de Janeiro, we were treated to many feats of athletic prowess. Our local Paralympic hero Danielle Hansen earned a silver, while superstar Michael Phelps brought home 6 medals – including 5 golds. We haven’t seen that much gold pillaged out of South America since the 16th century.

If that wasn’t enough excitement, we also got to witness four-time Olympian Ryan Lochte’s performance as a drunken and idiotic man-boy destroying a Rio public bathroom. Good times.

Anyway, in terms of pop culture, I would like to discuss the dominance of superhero movies and why the hell we need so many television shows featuring zombies. I’m sorry to break it to you, but superheroes and zombies are fictional. There’s more of a chance of me leaping out of my wheelchair and dancing the Macarena than there is of anyone getting attacked by a zombie. I don’t care what you read on the internet.

Speaking of fictional things, this year we also had folks roaming around looking for cartoon Pokemon on their smartphones. While the popularity of the game has waned, the surreality of it has not.

Finally, in less time than it takes to find Pikachu, the new Flying J truck stop on Sperry Avenue was completed. I’m not sure what kind of super-fast wizard built that structure, but they were clearly in Slytherin House. That’s some dark magic happening right there. I wasn’t aware that something could be constructed that quickly. I think someone should refer those folks to Caltrans.

While 2016 may have been surreal, here’s hoping your new year is not. Wishing you a happy and healthy 2017!

Fall To-Do List

pumpkineverything Some folks like the spring, while other yearn for the summer. For me, Autumn is the best season of all. I can feel its arrival in the air— the crisp mornings, later sunrises, and the stench of rotting leaves. I like to attack the season with vigor and purpose, which, for a Type-A person like me, means that I must make a list of all the things I’d like to accomplish. It’s no secret that I love lists. So, I just pulled out my favorite notepad and scribbled out the first three things that came to mind.

The first item on my to-do list is a perennial fall favorite— the Fantozzi Farms Corn Maze. Here in Patterson, we’re lucky to have this fun, family-friendly destination right at our door step. Each year, they select a unique theme for their corn maze design. This time, they’ve etched the US Capitol Building, along with the heads of presidential candidates Hillary Clinton and Donald Trump into their massive corn field. While it’s difficult to tell which candidate has the most inflated head, Trump’s hair, alone, should at least cover a couple of acres.

As always, there are lots of other fun and spooky activities for kids of all ages at the Fantozzi Corn Maze. You should check it out this October. After all, who knows when we’ll get another opportunity to run around in these candidates’ heads? I can imagine what kind of scary stuff we may find lurking around in there. Perhaps the thousands of Hillary’s lost emails and the remnants of Trump’s sanity? Who knows!

This leads me to the second item on my autumn to-do list— voting in the 2016 Election. Voting is our civic duty and responsibility. When I turned 18, I was so excited to vote in my first election— which turned out to be the historic 2000 Presidential Election. With all the Florida recounts, ‘hanging chads,’ and Supreme Court hearings, that election had more drama than an episode of the Real Housewives.

While voting at the polling stations on Election Day is more atmospheric, I’m personally a fan of mail-in voting. I like sitting in the privacy of my own home and wearing my favorite pajama pants while I vote. Being an informed citizen is key, so while filling out my ballot, I like to have access to Google and Facebook. These resources are our main sources of super-factual information. After all, everyone knows that everything you read on the Internet must be true. I’m pretty sure that Benjamin Franklin once said that. And, he should know since I once saw online that he also invented Wi-Fi.

Anyway, I suspect my voting experience this time around to be a much more somber affair. After I fill out my ballot, I plan to sit in a corner and cry.

To make myself feel better, I plan to start my Christmas shopping early— which is the 3rd and final item on my impromptu to-do list. I collect online coupons the way some people collect baseball cards, ceramic frogs, and if you’re Donald Trump, staggering business losses.

It’s a compulsion, and nothing makes me happier than getting 25% off my purchase with a coupon code that I found online. It’s the best feeling. So, I find that holiday shopping is best tackled when I’ve collected a varied assortment of coupons. As the old saying goes, ‘the early bird gets the coupon for free shipping!‘

Whatever your own personal fall to-do list entails, I hope you have fun with it. Just don’t get lost in that corn maze— there are just some things from which we can never recover…