#ThanksForDistancing

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Under the advisement of my doctor, I have been in self-quarantine for the last 58 days. In that amount of time, I’ve only been ONE place, and that was to receive a life-sustaining Spinraza spinal injection with my SMA neuromuscular specialist. To be honest, I would have taken these precautions even without my doctor’s advice. After all, I did have an awareness that humans are reeeally great at spreading germs around— just like monkeys love to throw their poop. I knew in my gut that COVID19 was coming— just like Randy Quaid knew that the aliens were going to attack in Independence Day.

As someone that is high-risk, not just for COVID19, but for other respiratory illnesses, I have a well-developed radar for danger. I’m like one of those police dogs that can sniff cocaine in a Toyota Corolla parked 9 blocks away.

By the end of January, I started to get a twinge. An inkling. I started to feel something looming on the horizon. I had seen the news reports from China. I knew it was impossible to contain a virus in this modern, fast-paced world. It was going to spread. It probably already had. Ever try keeping an entire litter of kittens contained inside of a box? Good luck— because at least one little bugger is going to sneak out of the box when you aren’t looking.

When I went into self-quarantine 58 days ago, I began to mentally prepare myself for the long-haul. I knew that this virus wouldn’t go away quickly. It would linger and I would have to be careful for many, many months. Possibly over a year. It was a lonely & isolating thought— removing myself from the world with no reasonable end in sight. Yet, I had some experience in this regard, thankfully. Cold & flu season is dangerous for me… so quarantining and socially-isolating is not a new thing for me. I do it at various points each year. Never to this extent, though. Not by far.

But, I had been training my entire life for this. It would be my personal Mount Everest Moment. My Reese Witherspoon Trying To Do The Pacific Coast Trail Moment. My Donald Trump Pretending To Not Want To Fire Dr. Fauci Moment.

But, as the virus spread (which I knew it would), and many grew sick and hospitals became overwhelmed, people actually began to take the threat seriously. Cities issued stay-at-home orders. States & nations shutdown. Governments finally responded. And, most amazing of all, people learned how to wash their hands. To be honest, I was surprised that these measures were actually being undertaken. And I was even more surprised that they were being followed.

This isn’t to say that I don’t think these measures were valid. Yes, they were— and still are! But, I guess the skeptic in me didn’t think our society had it in us to do something like this… to take drastic life-altering steps like this. To buy hand soap… and to stay home— on a massive scale.

It’s a huge deal.

As someone that has experience with quarantining, and living life within physical restrictions, I understand how difficult these times can be. Logistically. Financially. And especially emotionally. It is a mental hurdle that is not easy to surmount— especially when you have no experience doing so. So, I want to acknowledge that.

The stress of all of this is real. The burden of all of this is real. For the young. For the old. And for all the ages in between.

But, the steps we’ve taken (and continue to take) have given me hope. The curve is flattening, and many lives are being saved. We are buying time for science to catch up with this virus. We are giving hospitals time to prepare. On a personal note, the murky specter looming of many months of isolation now feels less gloomy because of what society has done… what you have done.

And I’m so very thankful.

To help get through the days until communities are able to loosen the restrictions in place, I thought it might be helpful to share some survival tips that I’ve honed through the years. I am a veteran Quarantiner, after all.

    1. Create A Routine — this is an essential component of surviving shitty times. For reals. Don’t be going to bed at 2am one day, and 7pm the next. Eat meals/snacks at a set time. Schedule Zoom sessions with friends. Write down a schedule. And stick to it. This helps regulate your nervous system & your anxiety.
    2. Create Benchmarks In Time — Having something to look forward to, however small it might be, is key to getting through each day. I recently instituted “French Toast Fridays.” Each Friday, I have homemade French Toast for lunch. It’s simple, but it’s something I look forward to because I get to put a mountain of whipped cream on top.
    3. Create Small Daily Goals — Often people think that a feeling of achievement can only happen when it’s something big. This is not true at all. Small achievements, even arbitrary ones, can help occupy the mind & give it direction.
    4. Create Gratitude — At the end of each day, write down (or say out loud) three things you are grateful about that day. It could be something serious, or something silly & inconsequential. For example, you could say “I’m thankful for… 1) my home… 2) my family… 3) the mute button on the Zoom app.”
    5. Create Your Castle — A “castle” is a safe-space. A place that protects you from harm. Instead of thinking of your home as a place you are confined to, think of it as your “castle.” A castle can also be something smaller than a home. It can be a bedroom, a corner of the living room, or even the 15 minutes spent alone in the shower. It’s a space, or a time, where you can just BE.
    6. Create Moments of Joy — Despite what you may think, little moments of happiness can be manufactured. You can conjure them up from anywhere— like a Patronus charm. For example, about a month ago, my friends & I decided that our group text messages to each other must be written in rhyme. (Shel Silverstein can kiss my ass.)

I think it’s important that we all are aware, though, that many people live in unsafe environments— whether it be from abuse, domestic violence, or extreme poverty. So, during these times, we must be aware of the struggles of others and offer compassion, aid & understanding when we can.

We can be kind,
If we just set our mind.

❤️

[If someone you know is struggling… the National Suicide Prevention Lifeline (1-800-273-8255) & the National Domestic Violence Hotline (1-800-799-7233)]

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A Letter from Quarantine…

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Hello Family & Friends!

Greetings!… just wanted to give you an update on me & my COVID19 prepping.

As you might have guessed, I’m in the highest risk group for this virus. Two weeks ago, my doctor advised me to self-isolate for my own protection— which I have been doing. Given the muscular & pulmonary weakness that comes with Spinal Muscular Atrophy, my mortality rate for COVID19 would be elevated. I’ve limited visitors & each person entering my home must be symptom-free & must wash their hands for 30 seconds. (They also must be able to juggle and play the lute.)

My anxiety is really high. No matter how mentally prepared you are, it’s still tough to process this life-threatening reality. Just like it’s difficult to process why everyone is hoarding all the toilet paper. COVID19 is a respiratory virus, not explosive diarrhea. (We’re not all going to die of dysentery like on Oregon Trail.)

But, nonetheless, I’ve settled in at home for what will be a long, loooong period of months. Having SMA has taught me many things… the main of which being the ability to plan & organize. And to rationalize.

I’ve got a respiratory arsenal on-hand— all the gizmos that help me stay healthy. I am better equipped to handle COVID19 in my own home than most hospitals. And that’s a fact.

Frankly, I’ve been preparing for COVID19 my entire life. This is the crazy scenario those of us with SMA plan for. (Too bad ya’ll with normal-working bodies can’t do the same!!)

What we’re doing right now, as a country, is trying to slow the spread of the virus. It’s called “Flattening The Curve.” So, these next weeks, my risk of infection are actually lower. I know that sounds weird. But, it’s true. (Ya’ll are washing your hands so well at the moment, that I secretly wish you’d do it every flu season!)

I mean, really.

But, this sustained diligence won’t last. Once the curve is hopefully ‘flattened’ by all these extreme measures, that doesn’t mean the virus stops circulating. It will keep going in the months after that.

People will eventually get complacent… they’ll stop washing their hands so much & these serious public containment measures will lift.

And, that’s when the chance of me catching this will increase.

So, when you think about COVID19, remember this important fact:

This is a marathon, not a sprint.

This is a marathon, not a sprint.

When I think of COVID19, I’m thinking in terms of months. Not weeks. Many, many months. I’m calibrating my brain to this reality. So, be sure you do the same.

Tell your friends that these drastic measures now are to slow the tide of infections… so that science & the medical system can keep up— can save lives.

My goal is that by the time COVID19 comes to me— whether it be in 1 month, 3 months, or 6 months, science will have more data on this. That protocols of treatment will be figured out & implemented. I’m in an online group with SMA people from around the world. We are sharing data, ideas, and science with each other— in realtime. And once people with SMA start getting COVID19 (which will happen, eventually), we will learn from each other how to fight it.

In the meantime, I’ll be here, playing the “long game.” Keeping my contingency preparations in motion… and spreading awareness in every way I can.

So, if you need me, you’ll know where to find me! ❤️

Elizabette

P.S. Don’t suck. Be smart. Wash your hands.

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Flossing & the Magical Days of 2020

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(appeared in today’s PattersonIrrigator.com)

When there are things that we don’t do often, sometimes these activities can take on a shiny, magical image in our minds. This happens when you do something only rarely. It becomes idealized in your head. Like what happens when you think of going on vacation, buying a new car, or flossing your teeth when your dentist isn’t around to see you do it.

It’s the rarity of these activities that makes them special. The scarcity. It’s the fact that you don’t do them every day. Every four years, there are several of these rare events. Lucky for us, 2020 is one of these special years.

For starters, at the end of July, the summer Olympics will begin in Tokyo, Japan. Hopefully. Well, provided that the entire eastern half of the world hasn’t died of the coronavirus and human beings are still allowed to assemble in large groups. But I’m sure the Japanese will figure out something. I mean, they invented a toilet that can heat, clean and dry your butt, so tackling the coronavirus should be a piece of cake.

I love the Olympics. So, this is an exciting time for me, and for all people that don’t really watch sports. Yes, we actually exist. And, no we don’t all own six cats. Some of us only own five.

The great thing about the Olympics is that it’s the ideal sporting event for people that don’t watch sports. Why? You don’t have to worry about deflating footballs, coaches stealing baseball pitching signs, or whether a driver might die when a NASCAR explodes into the air at 200 miles an hour. By the way, the fact that Ryan Newman isn’t dead after last week’s Daytona crash makes me wonder if something weird is going on. Did Newman make a deal with God, Jesus, or Charlton Heston? Because, thankfully, it seriously looks like that.

Anyway, 2020 is an action-packed year. We also have a presidential election in November, but I don’t think I need to remind anyone of that. There’s really not much to say about the election, anyway. Well, other than that one super-billionaire and 29 senators are running to defeat an incumbent president that really likes to spray tan. Oh, and I should also note that when the leading Democratic candidate talks, his right fist moves around in the air like it isn’t even attached to his body. Like a Muppet.

But, every four years, something else happens. Something miraculous. Out of the ether comes an entire extra day. This Saturday is that day. Leap Day, February 29, appears like an apparition. Magic. Suddenly, you have another day to do whatever you want. You could do something that you’ve always wished to do, like plan a vacation, or floss. Or you could do absolutely nothing at all— like the U.S. Senate.

So, I hope you enjoy this Leap Day. Do something special. If not for yourself, then for someone else. Savor every minute— because a day like this won’t come for another four years.

P.S. Don’t forget to floss, though.

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2019: A Reader’s Digest

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If you’re taking the time to read this, I’d like to commend you. While 2019 was a year of many events— on the local, national and international levels— there’s one activity that didn’t rank too highly in our collective lives this year. Reading. You know, the process by which the brain computes letters into words that eventually become ideas that we can think about inside our brains?

Frankly, it’s not surprising that no one reads anymore. Given our online world, if something can’t be shared in a meme, a 30 second video, or a 140-character Tweet, we are not interested. We’ve conditioned ourselves to only digest information in small amounts— like penguins regurgitating fish guts to baby chicks. So, to that end, I’ll try to keep this year-end summary brief.

On the international front, once again it was a great year for dictatorships. Vladimir Putin expanded his sphere of influence in Syria, Turkey and Ukraine, bringing Russia into a golden era of power not seen since Comrade Stalin gobbled up Eastern Europe like PAC-Man.

But, the real power-player of the year was Xi Jinping of China. After previously declaring himself the Wizard of Middle Earth, Jinping contained a huge public protest in Hong Kong, all while secretly detaining over a million people from ethnic minority groups into concentration camps— which the Chinese government lovingly call “Education Centers for Naughty Hobbits.” It’s very important, though, that no one talk or write about any of these events in Middle Earth because no one wants to pay more than $5 for a bottle of aspirin.

Science made a lot of discoveries in 2019. Astronomers released the first-ever photograph of a massive black hole captured by an intricate system of telescopes. Black holes are described as having gravitational forces so intense that nothing can escape— including light, atomic particles and Lori Loughlin’s career.

In New Zealand, biologists discovered ancient fossils from an unknown species of giant parrot that could grow to be three feet tall. That’s a really big bird. I bet it’d be a challenge to find a cage large enough for a parrot that is the size of a human toddler.

But, hey, maybe US Immigration could part with a few of theirs?

On the domestic front, the news-cycle has been dominated by tweets written by President Donald Trump at 3 o’clock in the morning. These tweets are widely shared because, as we established earlier, 140-characters is the maximum amount that most Americans can read at one time. This short-attention span has been very beneficial to the president because when Robert Mueller’s long-awaited 448-page report was finally released in April, no one actually read it.

In Hollywood, movie adaptations of the Avengers, Spider-Man and Captain Marvel all raked in the most cash at the box office. There are only two possible reasons for this. Either Americans can’t be bothered to read books made of cartoon drawings, or we’re desperate for a hero to save the world from certain doom.

In political news, we began 2019 with 25 Democratic candidates running for president. In the months since, an additional 379 people have joined the race. This includes a surprising number of billionaires— like Mike Bloomberg, Tom Steyer, Bruce Wayne and Scrooge McDuck. The candidates all claim to be able to beat Donald Trump, but their platforms and ideas exceed 140-characters, so I fear their chances of holding onto an audience are pretty slim.

Meanwhile, Congress has been awash with hearings of all kinds— hearings on presidential impeachment, hearings about executive abuses of power, and hearings about whether using the Oxford Comma would be seen as too socialist. No one knows how it will all turn out, but it still remains that less than 20% of Americans can find Ukraine on a map.

Back here at home, California is still no closer to building the high-speed train that was begun during the Millard Fillmore administration. Budget and cost overruns have plagued the high-speed rail process. Yet, at the same time, Governor Gavin Newsom’s pearly white smile remains suspiciously well-maintained. I don’t know if these two things are related, but I once bought Crest tooth whitening strips at Target and they cost more than the pair of pants I’m currently wearing.

In Patterson, it’s been an eventful year, too. As the revitalized Patterson Family Pharmacy is constructed, several new establishments have opened, as well— including a Starbucks and a Round Table Pizza. The latter establishment unfortunately joins the 692 other places that sell pizza in town. But, the new Round Table does distinguish itself by giving customers cool space-age wristbands. After these high-tech wristbands precisely dispense beer into cups, customers have the option of getting beamed onto the Starship Enterprise.

As 2019 comes to a close, we have much for which to be thankful. We can be thankful for our family, our friends and our great community. Lastly, we can also rejoice that we won’t often need to use those reading glasses we bought at Walgreens.

After all, it’s pretty easy to squint or trombone-through something that’s 140-characters, or less.

Wishing all of you a happy and healthy 2020.

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Thanks & Giving

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(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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Aliens, Shrinking Potions & Ten Long Months

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Three weeks ago, I finally got my new wheelchair. And, when I use the word “finally” I really mean it— for I began the insane process of getting a new motorized wheelchair over ten months ago. That’s a considerable amount of time. It doesn’t take folks this long to buy a new car— which is surprising given my new wheelchair costs just as much as a Ford Focus.

But, honestly, ten months is a long time to spend working on getting a medical device that helps you, well— survive. Try imagining all the things that could be accomplished in a similar amount of time. Have you ever thought about this? Well, I have. Because I’ve had ten months to do so.

So, here goes.

Elizabette’s List Of Things That Take Ten Months To Do

  • You can gestate a full-sized human baby. Should you desire to do so, this also includes a few extra weeks to breastfeed. (Hopefully, you live in a society that allows you to do it freely in public and not hidden away in a cave like a troll.)
  • You could learn a new language.
  • If you’re a white man, you could go on a 16th-century ocean voyage around the world to “discover” places that already exist.
  • You could plant, grow and harvest a vegetable garden.
  • You could serve a full prison sentence for raping an unconscious woman. (But, don’t worry— you’ll probably get out in only three months.)
  • You could become a licensed electrician.
  • You could write a book.
  • If you’re Donald Trump, you could read a book… Just kidding! (He doesn’t read.)

But, instead of doing any of these things, I spent ten months of my life jumping the bureaucratic hoops to get a new motorized wheelchair.

It would be natural to think that I’d be ecstatic when the new wheelchair finally arrived. But, I wasn’t. This isn’t to say that I wasn’t happy. I was, of course. Obviously. But, the arrival of the new wheelchair heralded the most critical (and hopefully final!) stage of the process.

Making sure the wheelchair fits.

You’d think this would be a given. That all the measurements taken by the wheelchair provider would be accurate. That it would be simple to fit me into a wheelchair that was custom-built for me.

But, it is not.

Three weeks ago, when my new wheelchair rolled into my house, right away I saw a problem. It was over three inches too wide. That’s a lot. Yes, my ass is big. But, no, it’s not that big.

“Uhm… just wondering… did Howard Taft order a wheelchair? And, if so, did I get it by mistake?”

The wheelchair technician, Raul, looked at me— then looked at the new chair:

“Yeah. You’re right, this chair is way too big.”

I felt dread pool in my gut. My mind began to run with an assortment of cuss words. In various languages. (Don’t forget, I had ten months to work on my vocabulary.) Would they have to send the damn chair back? Would we have to start again? Was there a chance that I wouldn’t cry in despair??

My spiraling thoughts were interrupted when Raul said:

“Don’t worry. I think I can shrink it down.”

Really?”

I was dubious. It was unlikely he carried shrinking potion from Alice in Wonderland in his toolbox.

Over the next hour, he dissembled my new wheelchair in the middle of my living room. Pieces were scattered everywhere. It was like a really expensive LEGO set had barfed all over the carpet. Then, we began to strategize new ways to use the existing parts. Using different configurations. And, slowly, my new wheelchair began to take shape.

Nearly three hours after arrival, we did it. I was seated, driving, and fairly comfortable, in my new (smaller!) wheelchair. It was a feat of engineering, creativity and luck— which, come to think of it, is the essence of life with a complex disability. But, for while the chair is functional and comfortable, there’s a small (yet, large!) difference. I’m sitting over an inch lower than I was in my old wheelchair.

Another key part of life with a disability? Learning to adapt. This skill is essential. And, unfortunately, in a world that’s not always accessible, it’s a survival tool, as well.

An inch may not seem like a big difference. But, when you have everything in your daily life and routine adjusted to a very specific height, this is significant. For example, imagine if aliens came down from outer space with a technology that transferred your head onto another person’s body. How would you feel?

Probably pretty awkward.

(And, no, Will Smith and Tommy Lee Jones won’t be able to save you.)

Adjusting to the new wheelchair feels very much like that. Even with most aspects being similar (if not nearly identical!), it’s still a challenge. In fact, I’m currently typing this on my desk that I had to recalibrate to fit the new ‘me.’

Honestly, it’s going fairly well, but oddly, on my computer keyboard, I’m now having trouble reaching the key for the number ‘nine.’ I’m sure I’ll figure out an adaptation for it eventually, though. But, in the meantime, I suppose I could refer to the number as 8+1. Although, if I’m feeling especially tired, it might be best if I spell it as 5+4 since those keys are closer together.

We’ll see. It’s not as if numbers are all that important, anyway.

Nonetheless, I must roll onward in this new set of wheels. If you see me, though, please don’t comment on how I’ve grown shorter (yes, this has already happened to me twice).

Also, just because the top of my head is now more within your reach, don’t take that as an invitation to pat me on the head like a cocker spaniel. And definitely don’t ruffle my hair the way your uncle Tony greets every child he meets under the age of 8+1.

Because I really hate that.

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