Masks, please.

Standard

This blog post will be a little more serious than my usual ones. There will be fewer cuss words, fewer jokes about politicians, and fewer references to pumpkin spice products. But, please keep reading, anyway.

A few weeks ago, I was invited to speak at a conference about my disability— Spinal Muscular Atrophy. This conference is a way for medical professionals to learn the newest research and collaborative ways to improve patient care. As a person with SMA, they wanted me to offer my perspective and feedback to the attendees.

I quickly agreed. Highlighting the lived experiences of disabled people is something that is often missing from events like these. Nothing annoys me more than having nondisabled people talking about how best to “care” for us without any effort to elevate our disabled voices. So, any chance I get to promote disability awareness– I am definitely going to take it.

So, I was all-in on speaking at the conference. After all, the knowledge that I have as a person that has lived with SMA my entire life is just as valuable (if not more so) than a doctor with four framed degrees on their office wall.

I started planning what I would say. What to wear. What topics seemed important to me. How I needed to make sure not to use any four letter words– which I tend to do, even when I don’t mean to. (I’m working on this. Really.)

However, after I happily agreed to participate, I found out something that changed everything. Masks were voluntary at the conference— they were not required. And the only way I found this out was that I had to directly ask an organizer about this safety protocol. If I had not asked, I would have shown up to the event unaware of this.

So, in summary:

A medical conference about Spinal Muscular Atrophy (one of the most complex, deadly genetic diseases in existence) seemed to be okay with not making masks a requirement to attend their event.

The reason for this decision? The conference organizers didn’t want to “impose additional requirements” on attendees. (The targeted demographic for the conference being medical professionals— who are nondisabled).

Yet, it didn’t seem to register that they were now hosting an SMA conference where an actual SMA person doesn’t feel comfortable attending.

Now, I know I’m not in PR, but this doesn’t have good “optics.”

In addition, many of these medical professionals will interact with high-risk SMA folks regularly. They don’t think a masked event is a good idea? I’d think the only thing they’d want to bring home from the conference is a free T-shirt and a stale poppyseed muffin from the breakfast bar— not an infectious disease.

To be perfectly honest, when I learned this, my stomach dropped. I felt nauseated. I felt tears prickle the corner of my eye. (It’s ableism at its most basic— prioritizing the wants/whims of the nondisabled to the disabled’s exclusion.)

Yet, a part of me was not surprised given how the world is trying so hard to return to normality. But, for those with SMA (and other disabilities) we’re endangered when society tries to act like the last 2.5 years didn’t happen.

Disabled people, especially disabled people of color, have had the highest mortality rates for COVID-19— and the lowest access to health care. This pandemic has been real to us in a way that it hasn’t been for other people.

The trauma of this continues for us each and every day. Yet, while society is now trying to “live with the virus,” disabled people are the ones more likely to die from it.

As a result, within the disability community, masking is seen as a form of accessibility. Like elevators, ramps, ASL interpreters, closed-captioning and large-print. Masking (along with testing and vaccines, of course) allows high-risk people to participate in society more safely, securely and fully. It is a way to say, “I care about you. I see you. I want you here.

Therefore, despite my initial enthusiasm, I won’t be attending this SMA conference. I am disappointed and sad. Disability can be isolating, and it cuts a little deeper when society displays such obliviousness.

So, I am left with this final suggestion: if you are planning a public event, please consider the disabled when you do so. By going beyond the basic policies of your city/school/company, you can ensure your event is more accessible and inclusive. (After all, those policies were made for political/economic reasons that suit the nondisabled masses. Not people like us.)

Don’t forget: the disabled will never be able to take a seat at the table unless we feel safe to do so.

It’s up to you to help make that happen.

Death by Bureaucracy

Standard

#DisabledLife is filled with unexpected surprises. Sometimes, it’s having a caregiver call out, leaving you scrambling to find someone to come get you out of bed before your bladder explodes. Sometimes it’s getting into your wheelchair, desperate for coffee, only to discover that the motors have died. Mind you, this is just 18 months after you spent $1,000 to replace those same motors. Good luck getting insurance to pay for it… those miserly wankers only dispense wheelchair repair money in tiny allotments— like it’s radioactive uranium. 

#DisabledLife is also all the time you burn navigating the minutia of a society not designed for people like you. Inaccessible places. Healthcare bureaucracy. People that won’t wear masks. But, if that wasn’t enough, #DisabledLife is also spending hours trying to get medical professionals to believe that you know more about your own needs than they do. (Heaven forbid!)

This weekend, I had another one of these #DisabledLife surprises. In my mailbox, there was a packet with one of the most dreaded return marks in the corner:

SOCIAL SECURITY ADMINISTRATION

When I saw it, I knew that nothing fun would be inside. There would be no Target gift cards, or 50% off coupons for pumpkin spice candles. There would be no sweet messages with heart emojis or stickers that smell like root beer. Instantly, I knew that no matter how good my day had been going up to that point, that the rest of my joy (and patience) was going to be drained by the contents of that envelope— like a damn black hole.

“Fuck.”

Yes, I actually said this aloud.

Then, I stared at the envelope for a few moments, debating when/how to open it. I eyed it suspiciously, like a bomb squad specialist defusing an explosive. When I couldn’t take the anxiety anymore, I grabbed my homemade letter opener (with a long handle designed for my weak, skinny hands), and sliced it open.

I read the top of the page:

“The Social Security Administration must regularly review the cases of people getting disability benefits to make sure they are still disabled under our rules. It is time for us to review this case. Enclosed is a Disability Update Report for you to answer to update us about your health and medical conditions, and any recent work activity… Please complete the report, sign it and send it to us in the enclosed envelope within 30 days…”

In case this jargon is confusing, let me translate: Social Security has given me 30 days to prove that my permanent, genetic disability hasn’t magically disappeared… like classified documents do at Mar-a-Lago.

I grumbled. And cussed some more. Then, I changed my weekend plans from “Binge Abbott Elementary on Hulu” to “Fill Out Useless Paperwork.”

My irritation was massive. It took all my willpower not to set the packet on fire. (Truly.) Yet, I managed to complete the forms. For the sake of my own sanity, though, I added the following letter for good measure.

Think they will reply?…

October 8, 2022

SOCIAL SECURITY ADMINISTRATION, P.O. BOX 4550, WILKES BARRE, PA 18767-4550

SENT VIA UNITED STATES MAIL

Dear Person Working At The Social Security Administration:

Hello. First, I’m sorry that you work at Social Security opening mail and reading letters just like this one. Everyday. Even after you’ve been sick with the “flu” — or, as is more likely, just hungover from too many margaritas.

Second, I’d like to introduce myself. My name is Elizabette. I live in California with a cat named Charley that likes to steal my breakfast. I was diagnosed with Spinal Muscular Atrophy, a genetic neuromuscular disability, at the University of California, San Francisco, just before my 2nd birthday. I started using a wheelchair at the age of four, when most kids are just learning how to pick their nose. My disability is progressive, so I transitioned to a power wheelchair at the age of seven.

Third, I’d like to assure everyone at the Social Security Administration that, yes, I’m still disabled. My genetic disability can’t be cured by clicking my heels together three times. In fact, I couldn’t even click my heels together if you asked me. Because, yes, I’m THAT disabled.

I need help with all my daily needs— like getting out of bed, showering, getting into my wheelchair, and cooking meth in my kitchen.

Anyway, here are a few more facts that might help you determine my disabledness. (Yes, I just made up that word. Feel free to use it, if you want.)

— I’m unable to drive, so I must hitchhike everywhere like a 1970s hippie just before they were murdered by the Zodiac Killer.

(Just kidding. Folks drive me around in an adapted minivan. You know, the kind of car that hauls around eight-year-olds and smells of stale Happy Meals.)

— I’m a patient of the Stanford Neuromuscular Clinic. I am followed by their team of neurologists, pulmonologists, physical therapists, respiratory therapists, nutritionists, butchers, bakers, and candlestick makers. My last checkup was on March 15, 2022. My next checkup is just a few days away.

— I’m attaching a copy of my health record from Stanford, just in case you don’t believe how damned disabled I actually am.

— I work from home a few hours a week as a bookkeeper. This part-time job gives me the flexibility to rest when necessary, and to tailor my work-schedule to my physical and medical needs. I can’t work a full-time job, or work away from home.

— My job pays me $600 a month. You folks at Social Security only give me $596 a month because you think I live in an alternative timeline where everything costs the same as it did in 1958. I use all my money to pay my caregivers. Every. Single. Dime. And it’s NOWHERE near enough to cover the total cost. This is why I sell my body on Craigslist.

— My lung capacity is 42%. Given my respiratory weakness, I am at-risk of severe complications from most illnesses. So, I avoid crowded, public spaces. This is a bummer, yes. But as most people kinda suck, I actually don’t miss this as much as you’d think.

— Oh, and I am unable to wipe my own butt. So someone else has to do it for me. Further, I poop twice a day. I know you didn’t ask this on the form. But, as Social Security seems to want to verify EVERYTHING about me, you might as well know this, too, right?

I guess that’s it for now. Let me know if you need me to provide anything else— like my firstborn child.

Most sincerely,

Elizabette

I know it’s been awhile

Standard

(appeared in today’s Patterson Irrigator HERE)

Hello fellow Pattersonites! It’s me. I know it’s been months since I’ve written. Time got away from me. It really did. Seems like just yesterday we were washing our groceries with dish soap and feeling grateful to find 1-ply toilet paper at the store. We didn’t care that our butts were chafed, we were happy to be alive.

I apologize for the delay in checking in, of course, but I thought I should touch base so you know that I’m not dead. Also, I wanted to let you know that I haven’t done anything crazy since last I wrote, either. For example:

#1. I haven’t joined a cult.

#2. I haven’t wasted twenty million dollars to go to space with Elon Musk.

#3. And I definitely haven’t joined an online multi-level marketing scheme to sell organic lip balm to every person I’ve known since 1997.

(Come to think of it, both #2 and #3 are also cults.)

Anyway, I hope you’ve been staying well and safe— and that you aren’t dehydrated from sobbing at the gas pump. So, make sure you drink lots of water and refrain from other activities that are bad for your health, too— like watching TikTok videos or being within six feet of Aaron Rodgers.

A lot has happened since last I wrote— on the local level, on the global level and on the personal level. But I can go no further without remarking on a sad local event. The passing of Ron Swift.

Publisher emeritus, quip master, and all-around stupendous fellow, Patterson will never again know a man as dedicated as Mr. Swift. We were lucky that Ron made this town his home all those years ago. For while Ron knew the things that needed doing, Ron also DID the things that needed doing. And it was done with a wry smile, self-deprecating wit— and little fanfare.

We could all learn something from that.

Seventeen years ago, Ron welcomed me to the Patterson Irrigator columnist family with open arms and was always there if I needed him. I appreciated that very much. He was Patterson’s very own Yoda, offering valuable perspective in a unique way that was always genuine and always unpretentious.

What a guy, Ron was. Missed, he will be.

On the global front, the last two years have been seismic. And, no, I’m not just talking about when Will Smith slapped Chris Rock. It’s been crazytown all over the place. For two years. Remember when a bunch of people attacked the US Capitol like zombies from The Walking Dead? Or when Prince Harry decided royal life was total crap? Or when Tom Brady retired from the NFL only to unretire himself a few weeks later?

It’s important to note that during much of this time many of us did not wear real shoes. Only socks or slippers with treads on the bottom for when we went to the grocery store. Or when we walked the 10 feet to our front door to grab the pile of Amazon packages sitting there. Sadly, we went so long without wearing real shoes that we can no longer fit them on our stumpy feet. But, when we go online to buy new (bigger) shoes, we now discover that shoes are 259% more expensive than the last time we bought them.

Yet, truthfully, it hasn’t all been bad. We did learn how to bake banana bread and what it felt like to spend 168 hours a week with our own children. So, there is that.

I do have to say, though, that some things that happened since my last column did come as a surprise to me. For example, I did not have “Putin Goes Ballistic” on my 2022 bingo card. Sure, I’ve made a lot of jokes about Putin in the past. About his shortness, his love of Botox, and the way his beady eyes look like death lasers. But I didn’t think he’d start a reenactment of the year 1939. Maybe I was naive, but you’d think he would have known that it was a bad idea. After all, everyone hates a bully. Everyone. It’s baked into our human genome. We hate bullies just as much as we love chubby babies, ranch dressing and Labradoodles. It’s even in the Bible. (Just ask Goliath.)

On a personal note, since my last column, two big events have happened in my life. First, I got an orange kitten. His name is Charley and he loves cheddar cheese, chasing tin foil balls, and taking naps on my wheelchair— mostly while I’m sitting in it. We’ve acclimated to life together pretty well, especially considering he tries to steal my breakfast two or three times a week. I’m sure I’ll share more about Charley in the coming days. After all, it’s hard for me to write about much else since he spends most of his day sitting on top of me. So, stay tuned.

The other big news? I turned 40. This may not sound like a big deal to most, but to me, it really was. After all, for most of my life, I didn’t know if I would live to see the age of 40 because most born with my disability do not.

As a kid, reaching 40 years old seemed like a mythical accomplishment. Something that was theoretically possible, but not likely to happen— like growing up to marry Indiana Jones or becoming best friends with DJ Tanner. While cool possibilities, it definitely was not in the cards for me.

In all honesty, the arrival of the COVID pandemic did not bode well for my chances to reach this milestone. I watched disabled and high-risk folks here, and around the world, lose battles with the virus. Yet, at the same time, I saw many doubt the risks. I heard jokes about masks, vaccines and other protective measures. Weirdly, I can understand this. After all, it’s easier to believe you’re immune from it all when you don’t look like me. It’s easier to push it all aside when you think you’re not one of those “pre-conditioned people.”

Coming into my 40th birthday during this pandemic was a surreal experience. For two years, each day has been difficult— for ALL of us. Yet, personally, I have keenly felt that each day has been a gift, too. Even though we still have a long way to go, each day I have survived has been a small victory.

Thus, when the clock ticked to midnight on my 40th birthday, I stared out into the darkness of my bedroom—contemplating how far I had come. And, then, I whispered:

“Watch out, Indiana Jones… I’m coming for you.”

Ableism: The “-ism” No One Talks About

Standard

(repost from my article on the Anthesis website)

When you think about discrimination, what comes to mind? Take a moment to ponder it. In your mind’s eye, who do you picture being discriminated against? How does this discrimination manifest? Where does it happen? And, lastly, why does it happen?

I ask these questions because we all have preconceived notions about discrimination. We may think about racism. Or sexism. Or homophobia. Or religious persecution. Our shared history has taught us to recognize some, more blatant, forms of these discriminations— but, sadly, we have a long way to go to identify and rectify the consequences that have resulted from them.

But there is one “-ism” that very few people know about. In fact, if they’ve heard the word, they likely don’t even know what it means. Yet, it’s an “-ism” they’ve most likely witnessed, and, I daresay, even directly enabled at some point in their lives.

I’m talking about ableism. The textbook definition, itself, is even vague— as if the person writing for Oxford Dictionary wasn’t quite sure what it is, either:

a·ble·ism, noun

/ˈābəˌlizəm/ 

discrimination in favor of able-bodied people.

No offense to the Oxford folks, but this definition isn’t helpful. Yet, oddly, the sparseness— the vagueness of it— and the fact that the definition doesn’t even mention the target of the discrimination… well, that says a LOT about how veiled and insidious ableism can be.

So, let’s expand this definition a little. Ableism is discrimination against people with disabilities based on the deep-seeded societal belief that they are inferior to the nondisabled. It is rooted in the long-held assumption that disabled people require ‘fixing,” and a notion that they are incapable of being full, independent members of society. Like other “-isms,” ableism classifies an entire group of people as ‘less than,’ and perpetuates harmful stereotypes and misconceptions of people with disabilities.

Ableism can occur in overt, obvious ways— through things like abuse, direct exclusion and denial of access. But, it’s the more subtle forms of ableism that can often be the most harmful to those with disabilities.

I am disabled. I’ve written about some of my life experiences here in this blog. Ableism is something I’ve quietly experienced my entire life— but during my younger years, I didn’t have the language or the ability to put it into words. Or, to really examine what I knew in my bones to be true:

Society saw me differently than others. I was measured to a different standard. Less was expected of me, yet I had to achieve FAR more to be taken seriously. To be heard. To be valued. I had to minimize my disability and shrink it down into the teeniest box imaginable. Even if I knew I couldn’t manage it. Even if I knew it wasn’t sustainable for me in the long run. 

You see, ableism demands these things of the disabled. Because being less disabled means that society values you more. You will have more access to education, employment, and economic opportunity. You will be listened to— and you will have more access to the healthcare and community services you may need.

Society perpetuates these values day after day. Ableism is baked right into the foundation of it— like walnuts in a loaf of banana bread. It’s the reason why the disabled are always one of the first groups to suffer during times of upheaval, like the COVID-19 pandemic. Ableism teaches us that the disabled are more expendable than the able-bodied. We see those values playing out right now in real-time.

There are undercurrents of ableism in the protests to masking, vaccine requirements and other public health measures. These protocols serve to protect the disabled and vulnerable, but as many of these protesters see themselves as “healthy,” they don’t see why they must do these things. They subconsciously believe their rights and their value exceeds that of others. Why do they think this? It’s not simply a matter of “selfishness” or a lack of “morality” (that’s too simplistic, and also, untrue). You see, it’s ableism that justifies this position in their minds. Ableism is what subtly reinforces the idea that they are superior to the ones they are being asked to protect.

This dark side of ableism can be very dangerous for the disabled. For that reason, it’s the one that many people don’t like to talk about. It makes folks uncomfortable. After all, society is invested in the narrative that it “takes care” of the vulnerable among us. We want to think this is true. And, while we do great things to care for others (we really do!), we still have a long way to go to achieve equity for the disabled. To achieve full personhood for the disabled.

No discussion of ableism, however, can be complete without acknowledging the added barriers and discriminations that disabled people of color experience. All the challenges of getting access, accommodation and resources are exponentially compounded for the disabled in communities of color. This is why disabled people of color are in the highest mortality group for COVID-19. Ableism and racism can combine in ways that can be deadly. We must not be afraid to acknowledge this and address it. No work to combat ableism can be fruitful without efforts to tackle these added racial disparities.

The disability community needs allies in these efforts. Our voices, alone, won’t make things change. Do you want to do your part? If so, I recommend that you learn more about ableism— and all the ways it can show up in our daily lives. My explanation above is rudimentary, so there is much more to learn. Here are a few links to check out:

Death by a Thousand Words: COVID-19 and the Pandemic of Ableist Media by Imani Barbarin

Disabling Ableism TEDtalk

What is Ableism?

This brief list is just an entry point. After all, the disability community’s experience with ableism is as diverse as the community itself. Yet, there are commonalities that bind us together. So, your first step is learning to recognize ableism when you see it— because, trust me, you will see it.

And once you do see it, you will have no excuse not to do anything about it. The power to make change will then rest with you.

Let’s get started, shall we?

New Gig

Standard

Hello, all! It’s me. I know it’s been months since I’ve written. I’ll fill you in on the reasons for that later (nothing bad!), but I just wanted to touch base to let you know that I’m not dead.

Also, please be assured that I haven’t done anything crazy in the interim, either.

For example:

#1. I haven’t joined a cult.

#2. I haven’t squandered $20M to go to space with Elon Musk.

#3. And I definitely haven’t joined a multi-level marketing scheme to sell organic lip balm to every single person I’ve known since 1997.

(Come to think of it, both #2 and #3 are also cults.)

Anyway, I just wanted to give you a short update on my latest project. A few months ago, Anthesis, an organization that serves developmentally disabled adults, asked me to come aboard as a contributing writer for their blog. It’s been a fun collaboration and I’m fully supportive of every attempt a company/organization makes to amplify disabled voices and perspectives.

You can check out my recent work for Anthesis by clicking on this link HERE.

More from me soon!!

XOXO,

Elizabette

Cicada Hordes & Lots of Spicy Nuggets

Standard

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.

Standard

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

Standard

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

Standard

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

C394D0D8-39B7-4552-934F-D5C462A11081[5616]

Further Greetings from Quarantine

Standard
(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

paper