A Canary in the Coal Mine

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I have officially entered my Oscar the Grouch period of quarantine. When I was on Twitter earlier, I saw this tweet, and literally never felt more heard or understood.

Those of us with complex disabilities (like Spinal Muscular Atrophy) were one of the first groups to begin isolating in the early days of this pandemic. We knew COVID19 was no-joke and we knew the risks it posed to us (and society) were real. We were the “canaries in the coal mine” — and we’ve been chirping loudly for months & months warning everyone about what was to come. Unfortunately, like real canaries in the coal mine, some of us dropped dead before the miners and the mining company noticed the poisonous gas that was about to ruin their lives, their business and their community. I wish I could say this analogy is hyperbolic but it isn’t because Rudy Giuliani already used up the quota of dramatic embellishment about 3 and a half weeks ago.

To be honest, I really thought that I’d get into this cranky stage of quarantine far sooner than I actually have. I made it ten months without having a meltdown… and that’s pretty good. After all, most people started freaking out by June. Although, if we include folks from the following three groups, we would need to push back that freak-out average to April 27th:

  1. people with CrossFit memberships
  2. people with acrylic manicures more than 1/4 inch in length
  3. people that consume more than 2.6 White Claws a week 

So, frankly, I’m proud of myself for enduring this as long as I have. What has changed, might you ask? Well, frankly, in my daily routine, not that much has changed from the early days of quarantine. I’m still observing all the health protocols— and I’m being more diligent than ever. The only people allowed in my home are my select few caregivers— for I need to keep my “bubble” as small as possible since COVID19 is raging faster in my area than herpes at a frat party.

This sustained diligence is not easy (for anyone, of course). But, personally, it’s not been the hardest part. I expected to have to undertake these health protocols. And I knew this would all go on for a looooong time. I was prepared for that. And prepared for an extended period of time at home. But, what was I not prepared for?

Well, I wasn’t prepared for… ALL THE REST OF IT. All the ‘Holy shit, are you for REAL?’ moments of this year. And there were a LOT of those moments. For brevity, here is a short list of examples:

  • The mental exhaustion of trying to ignore the many people with biology degrees from InfoWars that actually believed that a worldwide pandemic could magically disappear after Nov. 3rd.
  • The pain of biting my tongue while Facebook aficionados shared “facts” on social media that masks didn’t work and could actually make you *get* COVID19.
  • The willpower it took to not lash out at people that believe the weirdest shit I’ve ever heard. (i.e. That the COVID19 vaccine is a conspiracy led by Bill Gates to implant tracking devices inside our bodies so that the Illuminati can turn us into zombies.)

I really could go on… and on. So, that just goes to show that I was always destined to turn into Oscar the Grouch before the year was over— no matter how many Xanax I took.

So, where does that leave me now? I really don’t know. But, one thing I do know is that I will keep doing what I must do to stay safe and well. I can’t do any more than that. I can’t control the decisions of thousands (millions) of others that decide to ignore health protocols “just this one time.” Decisions that, when they ripple outward, endanger so many others. And, yes, even endanger my life. Because, the fact is: we canaries aren’t in the coal mine alone. You are with us, too.

Another thing I can do? Talk about my experience. Tell my story so that you know that there are countless people like me out in the world chirping loudly in the hopes you’ll hear us. And do the right thing.

There’s one final thing you should know: despite the fact that we have been sheltering the longest, those of us with complex disabilities & medical conditions are still not yet prioritized for the vaccine. So, we are counting on you to not be selfish assholes for just a little while longer. Not sure how to do that? Here are a few ideas:

  • You can wear a mask.
  • You can wash your hands.
  • You can be kind.
  • You can stop taking group photos with friends… or neighbors… or random people you met at Wendy’s… for social media to prove to the world that you aren’t letting 2020 ruin your life. (It’s embarrassing, and trust me, no one believes you, anyway.)

And last, but not least… For the love of sandwiches and all that is holy, DON’T gather for maskless meals with people outside your household!! I can’t emphasize this enough. Find another activity, or way to be together. Maskless gatherings (where food and drink are consumed) are one of the biggest engines of viral spread.

        (No masks) + (close proximity) + (touching serving dishes/utensils/cups) + (consuming food) = COVID19 Dance Party!

So, with that, I’ll sign off for now… Be well. Be safe. Be smart.

And listen for those canaries…

Further Greetings from Quarantine

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(this piece originally appeared in The Patterson Irrigator today)

It’s been a while since I’ve written here, an occurrence for which I heartily apologize. In fact, this is the longest stretch of time that I haven’t written a piece in the nearly 15-year history of my column. Perhaps you’re wondering what happened to me. Well, I’ve just been working really hard to not catch COVID19— a virus that my doctors have said would probably kill me.

As you might have guessed, due to my Spinal Muscular Atrophy (a neuromuscular condition), I am in the highest mortality risk-group for COVID19. At the end of February, my doctors advised me to self-isolate. Since that time, the few people that enter my home must be symptom-free, wear a mask and wash their hands thoroughly and frequently. They also must be able to juggle, speak Vulcan and play the banjo.

During the last four months, other than two necessary doctor’s appointments, I literally haven’t gone anywhere. Anywhere. Not even to get my favorite tacos. Not even to see my friends at a “social-distancing” BBQ. And, I definitely haven’t snuck into someone’s random garage to have an underground haircut.

I’ve been wanting to write about my experiences here for some time, but, have been reluctant to do so. During quarantine, many high-risk folks (including the disabled) have attempted to share scientific information about the importance of social-distancing, hand-washing and mask-wearing. And many of us have been harassed for doing so. A disabled friend of mine wrote a column in a newspaper about this topic and received hate mail. She was called “selfish” for even asking people to alter their lives and routines to protect high-risk people. Her life was devalued. Her viewpoint, muffled.

I, too, have encountered such attitudes. It’s a big reason why I haven’t written here in months. The emotional challenges of COVID19 are difficult enough without having to keep justifying the value of your own life. The value of elderly lives. The value of the millions of high-risk people around this country.

But, with things opening up now, and case numbers surging locally, I’m done being quiet on this subject.

I’ve seen the massive denial many people have of how interconnected all our lives are. How we all rely on one another. No one wants to admit how vulnerable they might be, and, in turn, how vulnerable society is, to a crisis of this magnitude. It’s why the online conspiracies about this virus are so rampant. It’s easier to make yourself believe that the virus was manufactured in a Chinese factory like Tickle-Me-Elmo than it is to accept the more frightening truth: that economies, nations, and communities can be ground to a halt, at any moment, because of a random and naturally-occurring mutation in a virus.

That’s some scary stuff. It can make a person feel very small. And no one likes to feel small.

Therefore, I urge you to exercise caution in the coming months. With things opening up, you don’t want to be that horny college kid, do you? The one that celebrated freedom from his parents’ house by sleeping with the entire Alpha Phi pledge class and getting a bad rash on his man parts.

No one wants to be the guy with chlamydia. So, don’t be that guy now. Wash your hands. Wear a mask. Don’t be an arsehole.

P.S. If you want to write me hate mail, please use a quill pen, calligraphy and then shove it in a box under your bed. All other comments welcome at: http://www.elizabetteunplugged.com

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#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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