Covid Update

#justtheflu

After a few days that were, let’s say, harrowing, at worst and exhausting at best, I think Sophie has turned the corner and is healing from The Virus. Sophie does not have any underlying immunological compromises or issues, but her gross and fine motor challenges make it difficult for her to cough or clear her throat if secretions gather. When I began to be worried about her breathing (not alarmed but, rather, worried) and her efforts to clear the phlegm that was collecting in her upper chest, I called her internist and spoke to a physician on call who advised a visit to an urgent care to take a look. If it were any other time than The Great Pandamnic, I would regale you with my visit to two different urgent clinics (warning: the next sentence is a loooong one), the first looking similar to a recently refurbished and gentrified hipster motel, all faux leather low chairs and a single, solitary worker behind the front desk, a concierge who watched me struggle with the wheelchair through one doorway and then informed me that we can’t see your daughter without an appointment even though walk-ins were welcome according to the same concierge who’d I’d spoken to just 1/2 hour earlier but who, I can only surmise, was put off by the wheelchair, but I wasn’t about to argue as I knew I’d get some sort of email from the corporation that owned the healthcare facility/motel asking for my experience as a consumer of healthcare, and the second, a big university clinic in a giant mall in Century City whose parking lot was filled with the cars of the blithe with nary a handicapped spot available. I did spot a Parking Vans/Carpools only, and with Sophie rattling in the back of my sexy Kia Soul Adapted Vehicle, I pulled rather aggressively into it, banking on the prestigious handicapped placard covering me, and if not, fuck it, I thought, I’ll pay whatever. Here I am regaling you because, honestly, you can’t make this shit up in the U.S. of A. where everyone is just doing their best, living their lives of rugged individualism. I raced through Nordstrom next and piled into an elevator with The Blithe Shoppers who had no idea the strange masked girl in the wheelchair had The Virus and thought they’d probably not care anyway because, well, #justtheflu and, you know, it’s encouraging that most people who died are severely compromised anyway, old or have co-morbidities (read this). The clinic is across from the Nordstrom’s on the second floor of the mall, the receptionist had said (he was not a concierge but rather a regular healthcare worker in a big university system), and when I began to struggle through his doors, he jumped up and gallantly helped me into the clinic where Sophie was promptly seen by a Nice Physician who took an x-ray of Sophie’s lungs (fine) and gave me the option of going to the nearest ER for hydration and more evaluations or home to push fluids and observe. I left the clinic and made my way through Nordstrom’s, past the hat display and through the men’s department and then to my illegal parking spot and then out onto the streets of the shitty.

Reader, you know me. I chose the latter. For the next 12 hours or so, I pushed the fluids and observed. Then a dear neighbor whom I love visited with an iced coffee and chocolate-covered banana bread, a mechanical blood pressure machine and information about a mobile hydration company that people use for everything from testosterone treatments, to vitamins, weight loss and — get this — hangover hydration. It’s a business, ya’ll, and I consumed. I paid nearly three hundred dollars for Sophie to get hydrated in our home as opposed to the emergency room where I would have waited probably for hours with Sophie’s drool collecting in her mask as she struggled to cough and breathe and swallow, paid well over $300 that would have gone to my deductible, and, well, you know the drill. I had a nice chat with the nurse who came to do the IV who I believe was grateful to be helping someone in need of fluids because she had The Virus, as opposed to being hungover or wanting to be skinnier. She had burned out of regular nursing during the height of The Pandamnic because of the pathetic response of our healthcare system getting them PPE and masks and, well, you know that bit, too.

Whelp. Before I give you the good stuff, here are some wise words from my friend Jeneva Stone whose young adult son with complex medical needs was hospitalized over the weekend with The Virus. Her Facebook posts are harrowing and put my mild experiences into perspective. Sadly, her experiences are not the exception, and she bravely and fiercely writes about and fights for the rights of persons with disabilities and their caregivers constantly. These are excerpts from her posts, and I think it’s important to read them and think about them. If you’re still here with me, I hope you will.

He took an ambulance to the hospital around 4 am this morning because he had spiked a 102 fever, his sats dropped to almost 80, and his heart rate shot up above 100. The oxygen generating machine we have at our home didn't work, although he would have gone to the ER anyway.

I rode home on Amtrak, wearing my KN95 mask and getting angrier and angrier at all the unmasked people on the train, especially the woman who I could hear coughing repeatedly. I arrived home filled with rage at all these non disabled people exercising their monumental privilege while my friends and my family and my community suffered as a result of everyone else's need to get back to normal. Our children aren't being educated, our children & adults are still at risk, we still can't get back to our own lives--but if the pandemic has shown us anything, it's that disabled lives are entirely disposable.

On behalf of the disability community, I'm just telling all of you that we're mad as hell about the CDC continuing to relax safeguards while doing NOTHING to ensure that disabled people are protected or even taken into consideration. I'm happy that the Democrats managed to pass part of Biden's agenda, but the men in the room ensured that HCBS and other home care supports--vital to our community--were stripped out. These supports are also what the disability community has needed during Covid to just get by. And you know what? The economy isn't secured by Wall Street traders and Business Tycoons--all of whom appear to be hysterical ninnies afraid of their own shadows, who can't get by without government support. The economy is secured through the human infrastructure of caregiving--we do the labor, much of it unpaid, underpaid, and unthanked, so that businessmen can eat, sleep, get their clothes cleaned, type on their computers and run screaming with their hair on fire if a stock price drops by 5 cents. I'm so sick and tired of all of the government's efforts going to prop up a whole class of people who have no loyalty to the rest of us, and no concern for anyone's well-being but their own.

But maybe that's just me.

As for Covid--You're tired of isolation, America? Well, so am I, and my family has had to deal with a lot more isolation over time than society in general. TBH, as a writer, I found the pandemic terrifically uninteresting on a creative level (although I was extremely concerned about those who were dying), because mostly non disabled people were suddenly aware of how awful social isolation is, how your world can change in an instant, and how you might have to alter your habits and life plans. My reaction to a lot of this--unless you had a bad case of Covid or were close to someone who died--was, ok, been there, done that, wake up and smell the coffee and stop moaning about how you want your life back. You're right. It is hard. And one day, you're going to "get your lives back" and you're going to forget all about those of us who have to live with the scraps you're willing to throw us. And, guess what! You all did get your lives back and forgot about us. Disability? We're just inconvenient now and preventing you from having parties and seeing your friends and running errands without masks on or riding Amtrak and hacking and coughing.

Anger is good. Don’t let anyone tell you otherwise. And like Jeneva told me years and years ago, being “nice” never got her anywhere at any time with any of the systems she’s dealt with for decades. Her son’s life is dependent on this anger. Jeneva backs up all of her righteous anger with action, too. She is an unbelievable advocate and has influenced countless lawmakers and physicians.

Now for the good stuff. I was moved to tears by my neighbors over the past weekend — by T who brought me the coffee, the banana bread, the blood pressure machine and info about the mobile hydration service. By A who brought me numerous popsicles on the first day. By H who had her husband drop off a fabulous book about Wes Anderson’s movies. By Carl, of course, who went to the store for me, got take-out food for me, emptied my garbage cans and offered constant reassurance and comfort via telephone from his apartment. Sophie seems to have turned a corner and lay outside today under the southern California sun. I am rich in friendships and grateful. So far, I have eluded The Virus.

Reader, it’s NOT #justtheflu for many of us out here. Go gentle and be well.