Fear and Social Distancing in Quarantine

I’ve been trying to think of a unique perspective to offer during this turbulent, scary time. I could talk about how what most people are experiencing right now — social isolation, fear of losing their health, and uncertainty about how to get basic supplies — is the every day life of many people living with chronic illness. After all, those of us with chronic illnesses have been going through this long before the coronavirus pandemic and will be dealing with it long after it’s over. For years, decades really, we have been living in quarantine, afraid of contracting a secondary illness that could make our conditions worse, as was my fate five years ago when the flu converged with my illness to leave me unable to walk, talk, or eat. Those of us who have lived this life know that the desperate search for treatment and a cure is as terrifying as it is frustrating. Like many people are now experiencing with the coronavirus, not knowing when, or if, a chronic illness will get better is truly scary.

But that’s not what I want to focus on today, because I do feel for what everyone is going through, whether it’s fear of contracting the coronavirus or the social and economic fallout from the pandemic. So I’d like to talk about some thoughts and observations I’ve had about this sudden and scary outbreak. I’ll try to keep it somewhat lighthearted because the world is serious enough right now.

First off, I’ve noticed a lot of people saying: “We’re gonna get through this together.” I get the sentiment, I even appreciate it, but if you think about it, this situation depends on us getting through it mostly apart, not together. If we’re being practical about it, the best way to get through this pandemic is by staying as far away from each other as possible (at least six feet, to be exact).

I know it’s hard to stay apart. As Vin Scully recently said, “It’s a very difficult time to go without hugs,” but that’s what we have to do to survive this mess.

When people say, “We have to get through this together,” I know they mean it more figuratively, but even that is problematic because some of the people who say it are the ones hoarding toilet paper and hand sanitizer or they’re celebrities who are getting tested for the virus without showing symptoms when non-famous people are literally dying before they get tested. Then, there are all the people getting fired from their jobs, by no fault of their own. It’s a humbling reminder that surviving a pandemic isn’t exactly a team sport. It can be, but we have to get creative. We have to depend on each other to keep a safe distance, we have to keep each other company, however virtually, and we have to help each other financially. It all creates this weird paradox where we have to stay apart but also rely on one another. And thankfully there are already examples of people achieving this delicate balance, helping each other from afar:

This is to say that I’m all for getting through this together, but let’s stay six feet apart and wear masks and disinfect everything every five minutes, and when the zombies come, let’s use the people hoarding supplies as shields.

Now, speaking of supplies, I really feel for those who have been without toilet paper, and I have some advice: use water. I know it may take some getting used to, but I promise it’s worth it to not wait in a mile long line at Costco and risk getting sick. Plus, you never know, you might find that it works better, because it does. Whether you use a bidet or a spray bottle or just jump in the damn shower, I promise it works better than that stupid toilet paper you can’t get your hands (or butt) on. And if you don’t believe me, just read this passage from Jack Kerouac‘s Big Sur:

It was he and George Baso who hit on the fantastically simple truth that everybody in America was walking around with a dirty behind … because the ancient ritual of washing with water after the toilet had not occurred in all the modern antisepticism … “People in America have all these racks of dry-cleaned clothes … they spatter Eau de Cologne all over themselves, they wear Ban and Aid or whatever it is under their armpits, they get aghast to see a spot on a shirt or a dress, they probably change underwear and socks maybe even twice a day, they go around all puffed up and insolent thinking themselves the cleanest people on earth and they’re walkin around with dirty azzoles … All you gotta do is simply wash yourself with soap and water! it hasnt occurred to anybody in America at all! it’s one of the funniest things I’ve ever heard of! dont you think it’s marvelous that we’re being called filthy unwashed beatniks but we’re the only ones walkin around with clean azzoles?” — The whole azzole shot in fact had spread swiftly and everybody I knew and Dave knew from coast to coast had embarked on this great crusade which I must say is a good one — In fact in Big Sur I’d instituted a shelf in Monsanto’s outhouse where the soap must be kept and everyone had to bring a can of water there on each trip … and besides do you know what it does to people to walk around with a dirty azzole? it leaves a great yawning guilt that they cant understand all day, they go to work all cleaned up in the morning and you can smell all that freshly laundered clothes and Eau de Cologne in the commute train yet there’s something gnawing at them, something’s wrong, they know something’s wrong they don’t know just what!”

I’m not a big Kerouac fan, but I do love that passage and he makes a solid point. Whether you use his advice or not, whatever you do, please don’t mitigate the toilet paper shortage by listening to former Arkansas governor and Trump BFF, Mike Huckabee. His solution just sounds painful:

Like toilet paper, hand sanitizer is also in high demand. As someone who hates hand sanitizer but still has to disinfect everything from the IV in my arm to the straws in my water glasses, I suggest using alternatives. If you really love hand sanitizer, you can make your own with some aloe and isopropyl alcohol, but personally I prefer to skip the aloe. Yeah it prevents your hands from drying out, but it also makes your hands a sticky mess, so I just use alcohol to clean my hands. I would wash them with soap and water, which is what I suggest people do, but I’m mostly confined to my bed and getting to a sink is nearly impossible and definitely not an efficient way of cleaning my hands, so isopropyl alcohol it is. Similarly, if you’re wanting to disinfect surfaces, I suggest using hydrogen peroxide and baking soda as alternatives to bleach.

Another issue with supplies is the shortage of masks. As you can see in the photos above (and video below), many people are making their own.

My mom has done a version of this, others have posted instructions online and there are even options for people who can’t sew. Not all masks are equally effective, but any mask is better than no mask. The mask shortage is a big issue because it seems like almost nobody has them. I see photos and videos with people out in public amidst the pandemic and very few, if any, are wearing masks. Where are all these masks that have sold out? Either a few people are hoarding them or people are self conscious about wearing them out in public. Either way, we need to figure out how to get everyone to wear a mask when they’re around other people. I realize that at any other time that would sound a little crazy, but this isn’t any other time. It’s understandable that people don’t want to look like germaphobes out in public, I guess, but this is not the time to be self conscious, it’s the time to be the biggest germaphobe in the history of germaphobes. This is the time to gather every last drop of your inner neurosis and channel it into keeping your microbiome to yourself. The alternative, of course, is much worse. Being self conscious about wearing a mask is worth not getting sick. And nobody is going to judge you. If they do, well, karma will catch up with them.

I’ve seen some misinformation saying that masks don’t really stop you from getting the virus. And while the mask itself won’t actually kill the virus, it will create a barrier and stop it from getting in your body. So wear the damn mask. And wear it as much as possible until the outbreak is over.

Now let’s talk about contagion. People are still going to the beaches (mostly in Florida), ignoring advisories to stay at home and quarantine themselves. As frustrating as it is to see, it made me think back to when I was in college and the H1N1 outbreak was going on. Honestly, I don’t remember much about it, but I’m positive that it wasn’t like this. I would have remembered if my classes were canceled and large parts of the population were quarantined. I’m fairly sure none of that happened, which means we’re in uncharted territory here.

When I was in college I might have been an idiot and had my party on the beach amidst a deadly viral pandemic sweeping the world. In fact, I probably would have. But maybe that’s one reason I’m now as sick as I am. Maybe I’m paying the price for the cavalier attitude I had when I was younger. There’s something about being young and healthy that makes feeling invulnerable practically second nature. It’s hard not to feel that way because you don’t know what the flip side is like, you’ve never been sick and debilitated. But let me tell you, it’s better to be cautious and safe than to have to live the rest of your life stuck in chronic illness purgatory, or worse, actual purgatory because you were unwilling to give up a few beers on a beach during spring break.

Spring breakers aren’t the only ones throwing caution to the wind though. Being cavalier in a time like this can be as seemingly innocuous as not washing your hands or not wearing a mask out in public. Making a habit out of these things takes time, and until that happens or until someone you care about gets sick, it’s easy to take them for granted.

The hard part, of course, is staying vigilant. Even if you’re aware of the potential danger of the virus and you take precautions, it’s easy to let your guard down and revert back to old habits of not washing your hands every chance you get or not wearing a mask out in public. You can get away with these things when there isn’t a deadly viral outbreak on the loose. But right now there is a deadly outbreak on the loose. So, please, take ALL the precautions. It’s only for a finite amount of time.

This pandemic is going to end, and when it does life is going to return to normal. People will stop hoarding toilet paper and making their own hand sanitizer. They will go back to touching and hugging each other, not staying six feet apart. I don’t know when this return to normalcy will happen, it could be a few weeks, a couple months, or a year, but when it does happen, I hope everyone remembers what it was like, how it felt to live in this strange alternative universe of fear and social distancing. I hope everyone remembers it because some people will have to keep living it. Those of us with chronic illnesses will remain in that alternative universe, the one we’ve been stuck in for years. We’ll keep living through it and looking for a cure for our own personal pandemics, but, I promise you, we’ll be gracious enough to not take all the toilet paper.

BEFORE YOU GO… 

1. Thanks for reading!

2. Some GOOD NEWS: My memoir, WHEN FORCE MEETS FATE, is now available for preorder on Amazon (Canada, Australia, etc.), B&N, and Booktopia. If you’ve already ordered it or plan to, the book will be published January 2021 and all copies will be delivered then. We’re currently working on a new cover for the book (that’s why there’s no thumbnail on the listing yet). I will be unveiling the cover before its published and I’m also working on the audiobook, which I’m excited about. I’ll have some big announcements in the weeks and months leading up to the release of the book. So stayed tuned!

A Veiled Attack on The Disabled

My first job was working the front desk at a gym for minimum wage. I had to scan member ID cards, re-rack weights, and clean the entire gym — wiping up people’s saliva from the sinks and their sweat off the treadmills, sanitizing the toilets and showers, and picking up the garbage they left behind. It was a thankless job that I did for less than eight dollars an hour. As hard as it was, the job was still easier than the work the Trump administration now wants me to do.

I’ve been disabled and unable to work for more than five years, but now the president is taking steps to send disabled people like me, who are physically impaired, back to work. President Trump’s $4.8 trillion budget proposal for the 2021 fiscal year aims at “getting individuals with disabilities back into the labor force” through a slew of vague policies and inadequate programs that will do more harm than good. 

As a disabled person who can’t walk and is confined to a bed or wheelchair around the clock, it would be physically impossible for me to do the work I used to, or for that matter, any work other than writing an occasional freelance article. I can’t clean toilets or wash sinks; I can’t wipe people’s sweat off workout equipment. I can’t even wipe my own sweat off workout equipment because I can’t work out.

In 2011, I was diagnosed with myalgic encephalomyelitis, which, if you read this blog, then you know is a devastating multi-system disease. I tried to maintain my work schedule, but the disease left me bedridden for nearly two years. I was too weak to take care of myself, cleaning up after someone else at a gym would have been impossible.

I spent years trying to get disability benefits through Social Security Disability Insurance (SSDI), but because I hadn’t contributed to the workforce long enough, I had to settle for Supplemental Security Income (SSI), which, in many cases, offers benefits that pale when compared to SSDI. 

Currently, I receive around $930 a month in the form of a cash disbursement from SSI. It’s barely enough to pay my rent, and not nearly enough to cover the thousands of dollars a month I incur in medical bills. Because my bills vastly outnumber the SSI disbursement, I often find myself needing more income. But there’s no way I could work a conventional job, even a part time work schedule would be unrealistic for me. 

Regardless, based on Trump’s latest budget proposal, he wants to send me back to work. It’s not enough that I can barely get by on my paltry SSI disbursements, now the Trump administration wants me to work when I can’t even walk. 

The administration also wants to make it harder to qualify for disability benefits by limiting a person’s reasons that they can’t work, including not being able to speak English.

The president’s plan, as reported by CNN, says that disabled Americans participate in the workforce at a rate less than half of that of our able-bodied peers. But that’s because many, if not most, of us can’t work. And it’s not because we don’t want to work or don’t need to work, the administration doesn’t realize that the reason disabled Americans participate in the workforce at such lower rates is because our disabilities prevent us from working. It’s not because we‘re unmotivated and need some sort of half-hearted government incentive or can’t find work on our own. 

Even so, Trump’s budget claims that the unemployment rate among Americans with disabilities is the lowest on record, which makes the president’s push to increase the participation rate of working age disabled individuals even more dubious. 

But the administration is also going after disabled people who can work. The proposed budget introduces substantial changes to Ticket to Work, a social security program that gives disabled people the option to work while keeping their Medicare or Medicaid benefits. Under the proposal, the program would be transferred to the Department of Labor, all but guaranteeing that it would change drastically. It’s not difficult to imagine disabled people who use Ticket to Work being stripped of their social security benefits when the program is moved out of the jurisdiction of the Social Security Administration. The president wants to make the program “simplified, streamlined, and improved,” terms that disabled people like me have come to know as code for diminishing or taking away our benefits. 

We aren’t the only ones impacted by such language. The president’s budget proposal is littered with other euphemisms used to indicate drastic cuts and changes. As Michael Hiltzik recently wrote for the Los Angeles Times, “Cuts in welfare, student loan forgiveness and disability benefits are described as ‘reforms,’ as is a cut in postal service support. ‘Modify’ is the word for cuts in federal employee retirement and health benefits.”

The proposal also eyes cuts in housing, education, and food stamps, all of which impact people with disabilities. According to The New York Times, the proposal includes a policy on establishing a panel of experts to create new programs that would increase the participation of disabled Americans in the workforce, the goal of which is to save some $47 billion over the next decade. The president also wants to save $10 billion by limiting retroactive disability payments when a person becomes eligible for the program. In total, the president would like to save $75 billion on changes to disability programs by 2030. 

While such efforts to reduce disability benefits and get disabled Americans back to work may seem savvy to some people, in truth, Trump’s budget does not have disabled people’s best interest in mind. Instead, he wants to reduce social security spending, despite his own public statements to the contrary. By all indications, his actions are a thinly veiled attack on Americans with disabilities and an aggressive strategy to get us to do jobs we can’t.

BEFORE YOU GO…

1. Thanks for reading!

2. If you would like to donate to support this blog I would be so grateful.

3. I am fundraising to pay my medical bills and if you’d like to help out by buying a shirt or hoodie I’d be equally grateful.

In an Emergency, Disabled People Are on Their Own

Last month I was without electricity for several days. If you pay attention to the news, or you’re like me and listlessly scroll through Twitter, then you probably heard about the power outages here in California.

In October, Pacific Gas & Electric (PGE), one of the nation’s largest utilities, voluntarily cut power to more than a million people in 36 counties in Northern California, at least three separate times. The purpose was to reduce the risk of wildfires, of which the company has admitted their power lines have caused in the past.

The voluntary power outages have done little, if anything, to reduce wildfires in the state. Despite the outages, fires continued to rage from Sonoma to Los Angeles throughout last month. And while the environmental implications and shortcomings of PGE have made national headlines, one crucial aspect has not: the impact these fires have on sick and disabled people.  

Thankfully my family and neighbors are incredibly thoughtful and have looked out for me in these situations. In the past, when our area has been without power, we’ve also lost our running water because it has to be pumped uphill to our house. But now that wildfires and power outages have intensified and become more common in California, especially in the fall months, we’ve had to adapt. Our neighbors have let us use a backup generator to keep food from spoiling. They have also lobbied the local water district to use generators to keep our water running during outages. This is an example of a community and government responding to people’s needs. But others haven’t been as lucky.

In one example, while responding to a tweet, the City of Berkeley told a concerned citizen that people who are dependent on electrical medical devices should “use their own resources” or go to an emergency room, instead of offering help directly.

How are disabled people supposed to go to the ER when hospitals and other medical facilities have had to evacuate during the wildfires? These patients and many other bedridden and home-bound people have been left without power to run lifesaving or otherwise essential medical devices.

In another example, a man in Sonoma County died when the power was shut off and he could no longer run his oxygen machine. This is the kind of thing that should be alarming to everyone, and to those of us who are disabled and equally as vulnerable, well, it’s just fucking scary.

Each fall, for the last few years, I’ve lived on edge, hoping a major wildfire doesn’t strike where I live and force me to choose between the lesser of two evils–stay and risk dying in my home or evacuate and risk making myself sicker and getting injured. Just like the sick and disabled people in Berkeley, I would be screwed, left to rely on my own “resources.” I would have to figure out how to get myself into a vehicle and out of danger when I haven’t even been able to get into a wheelchair for the last year.

Some people might say, well, that’s just how it goes–sick and disabled people get left behind if they can’t fend for themselves. But, really, that’s bullshit. I mean, come on, people run into burning buildings to save their pets, a large municipality like Berkeley can’t set up a shelter and some generators specifically for people who need medical care? It’s negligent, and lazy.

Here we are, in mid-November and the threat of wildfires is still hovering over California. The ground and the air are dry, the winds are high, and it still hasn’t rained. For now, all we can do is hope we find a solution to the wildfires that keep getting worse every year, the voluntary power outages that do nothing, and the unpreparedness of those in charge.

BEFORE YOU GO…

1. Thanks for reading!

2. If you would like to donate to support this blog I would be so grateful.

3. I am fundraising to pay my medical bills and if you’d like to help out by buying a shirt or hoodie I’d be equally grateful.