Cicada Hordes & Lots of Spicy Nuggets

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As I type this post, a massive horde of cicada insects in the Eastern US are preparing to re-emerge into the world after a loooong 17-years underground. Cicadas are masters of the “long-engagement” and you know that old phrase, “absence makes the heart grow fonder?” Well, whoever wrote that clearly knew a lot about cicada romance. After waiting years for this day, when the cicadas of Brood X emerge in the coming weeks, they will convene the largest orgy known to mankind.

Cicadas will be everywhere. After breeding on a tree, they will fly a little way, and then breed again on a shrub. And then again on the roof of a corner liquor store. And then again in the parking lot.

I can’t help but feel there’s something metaphoric about this. That after a long year underground, humans are also primed to explode into the world in a rabid frenzy of unprotected sex and really bad decisions.

But, please, have some restraint, people. We are supposed to be more evolved than cicadas. Our brains are bigger. Our wings are smaller. So, we should have the ability to control ourselves.

Right?

Even though I’ve been vaccinated, as a person with a high-risk disability, COVID19 could still pose a danger to me. So, I will continue to observe health protocols in public until more folks are vaccinated. In consultation with my doctors, I’m also still navigating which activities are safe/not-safe for me to pursue. This list will probably evolve & grow over time— like a Chia Pet.

To be honest, from an emotional standpoint, it’s also hard for me to quickly re-calibrate after 15 months of quarantine. I’ve been living like a bearded hermit. The kind that stores root vegetables in the cellar and makes whiskey out of old Corn Nuts. So, unsurprisingly, it’s gonna take a LONG time before I’m partying at Coachella. Or sharing a triple-order of Taco Bell nachos with 9 fun strangers I met outside a public toilet.

I don’t have the ability to shift gears quickly. It’s just not in my nature. I’m not a cicada. So, I am taking this one step at a time.

Earlier this week, I went for my 16th injection of Spinraza. These vital treatments for my Spinal Muscular Atrophy have been the only times I’ve ventured out since the beginning of this pandemic. These procedures are challenging because it’s tricky to navigate a 5-inch needle into my spinal fluid. Especially since I’ve got a twisty torso and two metal bars fused to my vertebra. So, these injections can be difficult and arduous.

Given Stanford is a teaching facility, I never quite know which neuroradiology fellow will be performing my procedure. It’s like having tickets to a really great Broadway musical, but you’re not sure if you’re gonna see Idina Menzel or her understudy. While you hope it’s Idina, there’s really no guarantee… especially if she ate some bad falafel the night before.

As I lay on the gurney before the procedure, waiting to be taken back, the on-duty neuroradiology fellow will come to introduce themselves to me. Often, this is the first time I’ve EVER met them. So, as you can imagine, this is the moment where I begin to silently judge this person. Do they seem trustworthy & competent? Do they have enough experience? Can they sing a high E6 while wearing green makeup?

In the nearly 4 years that I’ve been on Spinraza, I’ve met a parade of neuroradiologists. And I’ve judged each and every one of them. There have been quiet ones, cocky ones, ones that remind me of Meredith from Grey’s Anatomy, and ones that were rooting around in my spine for SO damn long that I wanted to charge them rent. Fair-market rent, of course, but I’m worth at least the same as Marvin Gardens with a hotel.

This week, when I met the neuroradiologist, I instantly got a really good feeling. You see, I have a radar for these things. And not to brag, but, I could probably sniff out a good neuroradiologist faster than it would take a police dog to find cocaine in Matt Gaetz’s nightstand.

And my intuition was correct this time, too. This 2nd-year fellow was competent and confident (without being cocky!) and he had that needle in position so quickly I almost didn’t even notice the nerve ‘zing’ that shoots down my leg when the needle has properly entered the intrathecal sac— which is the desired bullseye in the game of Pin-The-Tail-On-Elizabette.

Before I knew it, my Spinraza infusion was in, I was back in my wheelchair and on my way home. To celebrate the smooth procedure, I did something that I haven’t done in over a year. Something that felt like a huge step forward.

I went to a drive-through & ordered chicken nuggets.

Spontaneously.

I decided I wanted nuggets, and I got nuggets— all in the span of about 5.7 minutes.

This might seem ordinary. This might seem mundane.

But, this was a big deal for me. You see, I have not been eating food prepared outside of my home. I have not had fast food, or a chicken nugget, in nearly a year and a half. While some people may have gained weight during this pandemic, I actually lost weight. It’s amazing what just eating home-cooked meals and the on-going stress of fearing for your very life can do to a person.

So, instead of getting the 4-piece nuggets, I sprung for the 6-piece. My bony ass needed the extra calories. And those spicy nuggies were even better than I remembered.

As this summer begins, I plan to take more steps forward— maybe a trip to Target, or out for a smoothie with friends, or to an in-person book club meeting that’s not on Zoom. But, my ability to keep moving forward is conditioned on all of you doing your part, too.

So, be safe, be wise, and watch out for those cicadas.

One Year In.

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Hi. It’s been months since I’ve written here and, frankly, I didn’t intend to let this much time go by. But, the days go by faster than you’d think when you’re a high-risk disabled person trying to survive a deadly pandemic. My days fill up with tasks that I’ve never had to do with such sustained, long-term diligence before. Daily, I find myself musing…

  • Do I have enough PPE, masks, hand-soap, and hand sanitizer for me and for my home care assistants for the rest of the month? (Or will the masks be snatched up by the assholes in Idaho using them for kindling on the steps of the state capitol?)
  • When was the last time we wiped that doorknob?
  • Did I remember to include everything I’ll need for the next two weeks in my grocery order?

And, the most frequent thought of all…

  • Dear God, please don’t let one of my caregivers get COVID.

These questions, and hundreds just like them, have swirled relentlessly in my head for months on end. As I’ve written here before, this pandemic was a doomsday scenario that many of us with high-risk disabilities have, unfortunately, been preparing for our entire lives. So, the skills we’ve been forced to cultivate have come in handy in the last year. But, that doesn’t make it all any less exhausting or scary.

To give you an idea of what it has felt like: imagine you’re scurrying about, living your life, trying to get everything done, when suddenly, a giant ACME Looney Tunes hatchet materializes and suspends itself over your head. And begins following you around for 12 months— the sharp blade gleaming in the sunlight.

That’s what this pandemic has felt like to me… and to countless other disabled and high-risk individuals.

I’ve been told “it’s wrong to live in fear” — a narrative spouted most especially by those that are able-bodied and think the virus poses no risk to them… folks that are looking for a reason to dismiss the risk, to continue doing whatever they want, and to flip a metaphorical middle-finger at anyone telling them differently. But, this virus doesn’t discriminate— and I’m sorry, but I take little credence from folks that don’t know what it feels like to be on a ventilator, to have a suction tube shoved down their trachea, or the terrifying feeling when fluid builds in your lungs and you struggle and struggle to cough it out. People that don’t know what that feels like have no business telling other people what they should, or shouldn’t, fear.

The brilliant and eloquent disability advocate Imani Barbarin recently wrote of the pandemic:

I knew people were comfortable watching disabled and elderly people die, but I was wholly unprepared with the joy with which people would leap into harm’s way under the belief that only the vulnerable would die.

Despite the very real danger the virus poses to us, and the fact we have been sheltering longer than any other group, the disabled are still not prioritized for the COVID vaccine in many, many places. This needs to change. Several weeks ago, I was extremely fortunate to receive the COVID vaccine. This wasn’t because I was officially prioritized (I wasn’t!) it was solely due to the fact that I was lucky enough to have caring medical professionals that fought really hard for me once a vaccine shipment arrived in my area. This happenstance, this luck, this privilege, should not be the way that a disabled person, like me, gets the vaccine. For &%$@’s sake, I have a hard time coughing out a loogie, I should not be forced to get a leftover dose of COVID vaccine out the backdoor of a clinic at 7pm on a cold night. That’s how El Chapo makes a deal for 89 kilos of cocaine— not how a crippled girl with 42% lung capacity should be getting a COVID vaccination.

And what about the countless other disabled people (especially disabled people of color) that don’t have ready-access to a doctor or medical professional with the time or ability to help them navigate these very real hurdles? I was fortunate & privileged to get the vaccine when I did—  many, many other disabled people aren’t so lucky.

That said, I’m glad, though, to see vaccinations are expanding to essential groups, like agriculture & food workers, school staff, and other essential personnel. This progress is vital for us all— the only way for our society (and the world!) to get a handle on this virus is for as many people to get vaccinated as possible.

And that includes you.

I don’t care if you saw a “really scientific” blog posted by your friend Cassie on Facebook claiming that the vaccine will turn your reproductive organs into lemon-flavored jellybeans.

I don’t care if you think COVID is “no big deal.”

I don’t care that your gym trainer saw a “super believable” TikTok that said the vaccine will mutate your DNA as if a radioactive probe had been placed up your anus.

When the vaccine is available to you— get it!!

And don’t forget one more thing: never before in medical history have we seen scientists from around the world coming together for one purpose. There has been unprecedented, historic cooperation on these COVID vaccines. So, it’s important that we don’t falsely compare the timeline on these to other vaccines of the past. Other vaccines have taken longer to produce because they haven’t had the sheer number of scientists working on them. They haven’t had the resources to devote to it. To test it. To evaluate it. Other scientists of the past have had to balance other experiments, and research, at the same time. This wasn’t the case now.

To use an analogy: Two carpenters decide to build a hotel with 50 rooms. They have to build it all on their own because no one else will help and they have to be as cost-effective as possible because their boss offers minimal support and funds. Plus, they have other part-time construction jobs, too. So, it takes them 3 years to build the hotel all on their own.

Compare that to 25 carpenters that get together and decide to build a hotel with 50 rooms. Their boss gives them oodles of support, resources, half-finished blueprints, and extra staff. Working full-time, they build the hotel in 3 months.

How can someone say that the second hotel was built “too fast” when the builders had so much more help, time, and resources to devote to it?

In truth, you simply can’t compare them.

Lastly, I hate to be the one to break it to you… but COVID is not going away. The virus won’t just pack up and move to Costa Rica like your kooky neighbor Larry because he thought America was turning into a Dr. Seuss-hating, communist shithole.

It’s here to stay.

So, the more immunity we all collectively build against this virus, the slower the spread, and the less mutating it will do. For those of you that have had COVID, or don’t think the virus will do you long-term harm, you should know that getting sick with COVID results in far fewer immune antibodies than is produced by the vaccine. So, being unvaccinated, you will get COVID again sooner, potentially more severely, and likely shed more virus particles to those around you— like a drunk 22-year-old flinging contaminated beads at Mardi Gras.

And there are many people out there, like me, who are counting on you to not to be a sloppy, inebriated frat boy.

So, don’t be.

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…

A Summer Recap

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Today is the last day of August, which means it’s the last day of Spinal Muscular Atrophy Awareness Month, the last day I need to feel guilty about consuming pumpkin spice flavored products, and the last day of the eighth month of 2020— the year that seriously NEVER FUCKING ENDS.

As I write this, I’m sipping on a Starbucks pumpkin spice latte that was dropped off at my door by a mask-wearing friend— a drink that I re-heated before consuming with my own straw (because COVID, duh). My guilt about enjoying this autumnal beverage is now at a very low level. I love pumpkin spice and I’m not afraid to admit that considering I’m less than 24 hours away from turning the calendar into a month that ends in “-ber.”

Reflecting back on August, and the summer as a whole, I’m just glad to get this season behind me. It’s been long. It takes a lot of emotional bandwidth to be a very high-risk person during a global pandemic. To have to sequester yourself in your home for months at a time (with no end in sight) because the virus is so tricky, and not enough people in the nation, and in the community, are taking this risk seriously. To know that if you get COVID19, it will probably kill you. To know all of those things, but still try to keep a routine, and stay as safe as you can. It’s a lot to juggle.

Those of us with SMA are often expert jugglers, thankfully. It’s something that Spinal Muscular Atrophy Awareness Month should definitely highlight— which it really doesn’t. We can balance home, school, work, medical, and care attendant schedules so efficiently that often people don’t even see us doing it. We’re like ninjas. Crippled ninjas with great organizational skills. Yet, oddly, society often mistakenly thinks disabled people like me don’t have anything to do. That we sit at home all day watching reality television shows and FoxNews. Which is weird. If I wanted to do that, I’d just be President of the United States.

This August has also been hot. And smoky. Having a disability that impacts your respiratory system isn’t ideal when a giant wildfire is burning just a couple dozen miles from your house. The apocalyptic ash falling from the reddened sky is not a great visual for a year that has already turned into a real-life Hunger Games.

Thankfully, the summer did have some bright spots. I got my 13th Spinraza injection at the end of June— which was the first time I had really ventured out of my house since March. The injection went smoothly and it was comforting to be in a place where people weren’t whining about wearing masks like little assholes.

The summer brought more good news on the SMA front— the FDA approved another treatment for my condition. It’s called Evrysdi, which unfortunately sounds more like the name of a magical elf from Lord of the Rings than it does a medication. I suppose it really doesn’t matter what the name is… just as long as they don’t manufacture it in a tree. Evrysdi is an oral suspension drug taken daily, unlike Spinraza which is administered via intrathecal lumbar injection every 16 weeks.

I’m excited that there is now another option available for our SMA community. Just five years ago, I never would have imagined that this would be the case. I never would have thought that pharmaceutical researchers would have bothered to take the time, or use the resources, to develop one, let alone THREE treatments for SMA. The third being Zolgensma— a gene therapy for infants up to 2. (No offense to the Zolgensma people, but your drug name sounds like a StarTrek villain that wants to destroy the universe with a laser. #SorryNotSorry)

Note: I should probably add at this point that I am available to any pharmaceutical companies out there that need help coming up with names for your future SMA drugs. It might save you considerable headache if you just ask me first. Because I will make fun of the name. I just can’t help myself. Just like I can’t help myself from imagining that Spinraza was the name of a 1920’s showgirl that waved around a 6-foot feather boa.

Anyway, that’s it for now. I think it’s best to wrap this up because I’m getting down to the bottom of my pumpkin spice latte. And it will take all of my concentration to slurp up the last orangey bits of nutmeg swimming at the bottom.

So, with that said… Cheers to all of you. xoxo

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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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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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Facing Voldemort

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When you’re disabled, you learn to adapt… tweak… make-do. These skills are essential, because as much as the modern, progressive world likes to think it’s ‘woke as **ck‘ — it’s really not. Full inclusion of disabled people in society is a long way off, and these issues barely register on even the most liberal political agendas. In fact, during this election season’s rounds of televised Democratic debates, I haven’t heard one of the 318 presidential candidates even say the word ‘disability.’ Considering disabled Americans are the largest minority group in the country— one that spans race, gender, religion, sexual orientation, and socioeconomic background— you’d think it would come up. At least once. (Just like Bernie Sanders yells and shakes his fists at another candidate at least once a debate.)

It’s possible the candidates are just being thoughtless in ignoring disability issues in the debates— like when careless people forget to put another roll of toilet paper in the bathroom after they’ve used the last square of Charmin. But, perhaps there is another, more sinister meaning. What if they are subconsciously afraid of saying the word ‘disability‘ aloud because then it acknowledges that we actually exist? And, maybe, just maybe, they are frightened of us? It could be possible. After all, this was why everyone was reluctant to say Voldemort’s name aloud in Harry Potter.

Let’s not forget that even The Ministry of Magic discouraged folks from saying it at Hogwarts. They worried that if someone voiced the name of Voldemort, the most dreaded wizard in the land, it would give him the power and recognition needed to rise up. And that was definitely not okay… because then all the normal wizards would have to face the fact that they were only one Death-Eater attack away from a nursing home run by Hufflepuffs.

So, yeah, you can see why they’d prefer to pretend like we don’t exist. It’s scary to imagine the power potentially wielded by 1 in 5 Disabled Americans. Because not even the mighty Teamsters Union can muster these kinds of numbers— even though Joe Biden desperately wishes that they could.

I think maybe it’s time for us to be a little scary. Be a little loud. Because we are not only fighting for ourselves. We are fighting for everyone. After all, we are also the only minority group that anyone can become member— at any time. Plus, if you live long enough, you’re probably eventually going to need the homecare services we are fighting so hard for, too.

I hate to break it to you, but not even the best Patronus charm can do a damned thing about that fact. Eventually, you’re going to need someone to help you get out of bed in the morning. You’re going to need someone to help you prepare your meals. Hell, you’re probably going to need help wiping your own ass. But, here’s the thing: unless you meet the impossibly stringent & poverty-driven Medicaid guidelines, you won’t qualify for homecare services.

Despite what you may believe, Medicare and private medical insurances currently do not cover homecare. So, you could lose your house, your retirement and all the things you worked your entire life to achieve just to pay for medically-necessary care costs.

Thinking of just going to a nursing home? Good luck with that— the care received in institutionalized settings are substandard, dangerous, and far, far more expensive than the costs of providing care in your own home… in your own community.

Given that homecare is cheaper and safer than institutionalized care, isn’t it surprising that it’s not covered by Medicare and private insurances? Wouldn’t logic say that it should be covered? Well, yes. But, denial is a powerful thing. And the denial of the notion— the reality— that anyone could become disabled at any time in their life is even more powerful. It’s no wonder no one wanted to say Voldemort’s name in Harry Potter. That was some scary shit, yes?

But, if these services existed— and were more available— maybe disability (and even old age!) wouldn’t be so fucking scary to everyone. Maybe then we could change the whole narrative around it.

However, first, a narrative must begin. And, to do that, someone needs to talk about it. But, I’m afraid that with the current slate of presidential candidates, that’s not likely to happen. Why?

Well, the top contenders Joe Biden, Elizabeth Warren, Bernie Sanders and—yes, Donald Trump— are all over the age of 70. Given society’s subconscious aversion to disability and old age, these four main contenders definitely do not want to draw attention to how old they actually are. (I mean, no one wants to yell Voldemort in a crowded cafeteria, do they?)

Even though you’d think these presidential contenders would be ideally suited to discuss these issues (given they are closer to the age of needing these services), there’s NO damn way they are going talk about that. Just look how long it took Bernie Sanders’ campaign to acknowledge his recent heart attack? Look how evasive Donald Trump is in releasing his full medical records? (And, no, it’s definitely not because he’s got the most greatest health in the history of all American presidents— including, of course, all the leaders of the most bigly and powerful nations in Earth history.)

So, who is going to do the talking, if not us? Who is going to make people uncomfortable so that they can face the reality of their own human frailty? That they will need help someday? I guess that falls to us disabled folks.

This election season, perhaps you should give this some thought. Who will best fight for you when you need it most?

Because, like it or not, Voldemort is coming.

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