family

Fear Gone Rabid

New York is that cab. I am that cab. Hell, we are all that cab. Balanced precariously, not on the tip of a friendly well-trained nose, but on the edge of the undomesticated and aggressive Covid-19, while the sun continues to rise in the background each day, unconcerned by the dramas and traumas of human beings.

I’ve ranted over the past couple of weeks, vented the anger and frustration of not enough people in the US taking this seriously enough, the hideous politics of a literal pandemic while we have a president and administration that cares nothing for its citizens. These last days, though, no matter how I try to hold tight to the protective coating of anger, anxiety has continued to ratchet up and fear has coated the surface of every thought. Writing, whether fiction or blogging, is my way of taking control and muddling through, always has been. So I’m writing now hoping it will help me get a handle on this. I’m not sure it’s possible, with no end in sight and no certainty as to the scope we’re facing. I may or may not actually post this one.

If you are a reader who follows Mrs Fringe, whether long term or more recent, you know I’ve spent more than my fair share of time in emergency rooms, ICUs, hospitals. More than most, not as much as too many. My fears today, the anxiety that’s taken a blowtorch to my gut over the past month, comes from those experiences, from knowing how these things are “supposed” to go, from being able to envision but not able to face what lies ahead for too many of us. The other day I went to the grocery store. A long line to get inside, but once I was all was neat and organized, people (for the most part) working to keep their distance from each other. Not necessarily six feet, but this is Manhattan, it just isn’t physically possible in most shared indoor spaces. As I walked up the frozen food aisle I had to stop because the cases on either side of me took on the gray fuzziness of oh shit, am I going to pass out? I wasn’t, and am not, ill. This wasn’t the first time I got dizzy while out and running a necessary errand in recent weeks, had a moment of oh my god, this is not right, not a personal trauma, the world is wrong and will never be the same. Not even the first time it’s happened outside of Covid-19. I have a strong stomach and high tolerance for medical stuff, but oh man did my knees go out weeks? after Husband’s second open heart surgery, when the physician’s assistant was removing the drainage tubes from his chest and abdomen and I heard the peculiar, specific, sucking, squishing thwok of that first seal being broken. Other times also, with no particular, obvious trigger, always after a crisis has passed, when the fear, emotion, excess caffeine, lack of sleep and often lack of decent nutrition hit me in a mundane moment of checking for a ripe avocado. This time my brain isn’t waiting until after. I’m panicked now.

I, Mrs Fringe, am fucking terrified. Our closest hospital is one we’ve been to many times, both their adult ER and the Peds ER sections. Many fine doctors there, some inpatient units are excellent, never had any problems in the ped ER. The adult ER? Another story entirely, and over the years it’s gotten worse and worse, to the point where I’ve said I will not go there for anything anymore. Why? Because they’re chronically understaffed, and an understaffed and overcrowded ER is dangerous, no matter how good and well trained the nurses are. Less than a year ago we were there, Husband, it was a guy from housekeeping who turned on the oxygen and gave him a nasal canula when I couldn’t get a doctor or nurse to come over when his o2 was dropping. One story of many, and that’s with me there, staying out of the way when I can/need to and making noise when I need to do that too. Again, not the fault of uncaring or lackadaisical nurses, but the limits of how many high needs patients any one person can reasonably care for, with new patients streaming in and needing assessments every few minutes. Stretchers stacked like a damned game of Tetris, many times I watched workers from transport needing to move 4-10 patients just to reach the patient they were there for and be able to get them to their next stop in the hospital.

I stay when Husband is in. I stay when Art Child is in. For all our hospital time, we don’t go unless it’s absolutely necessary. And part of when an ER visit or hospital stay is absolutely necessary, by definition, means the person being seen/assessed/admitted isn’t feeling strong, maybe can’t speak, certainly can’t make a fuss if they need something and staff are busy elsewhere. Other hospitals. It was me who yelled for the nurses in the step-down CICU after Husband’s first open heart surgery, when he turned blue and all tubes and bags filled with blood, his aorta ruptured along the suture line of his new valve. Would they have come running thirty seconds later? Would thirty seconds have mattered? It might have, considering they needed to reopen his chest there in the room and manually pump his heart on the way back to the OR. Or when Husband was on a vent and the ICU dr decided this was the perfect time to preen for the nurses and show off how the temporary pacemaker leads were/weren’t working, giving unnecessary shocks until I spoke up because he didn’t know about damage to a nerve he was expecting to see a response from because of a prior surgery (Husband, obviously, unable to tell him). Or, less crucial but important, when we had the (thankfully rare) experience of an unkind EEG tech who was too rough placing leads on my girl’s head, and she was too terrified to do anything other than cry quietly. Or the times food service sent non-diabetic meals to Husband. Or the many other times when calories in take precedent over what type of calories, so I go out for foods to tempt while the hospital trays sit uneaten. Or with MIL, when some slick talker from billing came into the room to offer threats about insurance claims and what would be owed. Yes, I kindly invited him to get the fuck out and take it up with Medicare, not a vulnerable elderly woman who’d had her chest cracked open two days before who’d only been off the vent a matter of hours.

These are just a few bad moments of lapsed or potential lapsed treatment in otherwise great care, with many, mostly reassuring moments. Every ICU nurse I’ve ever interacted with (Peds, cardiac, or general) has been great to oh my god this person should be nominated for sainthood). ICU nurses are extraordinary, with training that goes well beyond the nurse drawing blood at your local GP’s office. But when hospitals have literally overflowed into tents, it isn’t just equipment that will be in short supply, it will be staff, doctors, nurses, nurses aides, physician’s assistants, because both there are too many patients and because they themselves who are getting sick.

Yes, there are the very real extra fears that go with knowing people in my immediate world are particularly vulnerable to more severe manifestations of this virus because of pre-existing conditions. And it’s more than that. If one of those I love needs to be admitted because of Covid-19, or what about the non-Covid-19 related reasons I have the experiences I do that haven’t magically disappeared, how will I be able to just leave them there? Maybe in a hospital, maybe in a fucking tent? Nerd Child isn’t even here. He’s safe and healthy, for now, but if things go sideways and he was to get sick? I couldn’t go to him. If Husband or Art Child or Man Child was to need hospitalization he couldn’t come to be with them either. The thought of walking away, not being there if Husband is on a vent? Literally makes me sick. One of my children? I can’t imagine it, because the pain of that very real possibility overwhelms my ability to paint that mental picture. But I can’t stop thinking about it, at least the edges of the possibility, because I have been there in “normal” times. Our normal abnormal. In fully staffed hospitals with all the needed equipment. It’s knowing that if medical equipment needs to be rationed, there’s the very real possibility those preexisting conditions will render them ineligible for a needed ventilator. It’s the incredibly stupid comments I continue to see and hear online, in the news, in the community, from stupid people still blaming the ACA, or Obama, or saying those same rationing conditions existed under “Obamacare.” Wrong. Wrong, wrong, wrong.

If you’ve never experienced a loved one on a ventilator I’m glad for you. I hope you never do. It’s awful, and illness, injuries and novel viruses don’t give a shit who you vote for. But for those of us who have, repeatedly, who deal with chronic illness and disorders that make things like staffing patterns, hospital admissions, ICUs (hell, the fact that we “joke” about July being the worst time to have a crisis requiring admission because that’s when the new residents come on board), know the best cart to get coffee from part of our basic facts of life, there’s an entirely different level to this hell we call the Covid-19 pandemic.

This isn’t a potential crisis, it is a crisis. It’s real and it’s here. That was a few days ago. As of last night, there were 26,697 confirmed cases of Covid-19 in this city, 5,250 hospitalized, 1,175 in ICUs, and 450 deaths. Those numbers are just in NYC, just the confirmed cases. It may or may not be futile, but I’m doing all I can to keep me and mine safe, keep others safe from us should one of us get it. Please, please, all of you do the same.

Are You Okay?

Normally bustling hallway of hospital

The question on everyone’s lips. Well, not everyone, some are still licking toilet seats because they think it’s funny or just moaning about the inconvenience of bar closings, having to cancel vacations, having to self-quarantine if ill/possibly exposed to Covid-19. But pandemic or not, stupid’s gonna stupid and selfish is gonna selfish. The good news is there are also incredibly generous people working to feed the hungry/about to be hungry, some (too few) companies who are continuing to pay employees they’ve been forced to lay off or furlough while their doors are shuttered.

But back to the question. I am not ok. I know this, knew it, thought if I acknowledged the fact it would help keep my anxiety under control. Until Husband’s appointment yesterday with his young, upbeat doctor who just a couple of months ago said I was feisty, whose face was somber and I found myself having to work not to cry in response. The above photo of the hallway in the hospital? Yeah, that hallway is usually a hub of activity with an outpatient lab, cash machine, tea/snack kiosk just behind, and elevators leading to many of the individual doctor’s offices and departments. more than once we’ve had to wait for one of the elevators to arrive and open a second or third time because they were just too crowded. Not yesterday.

For everyone who is practicing social distancing, there are many of us who can’t stay home for two or three weeks, or six months, or a year, or however long this breath holding season is going to be. There are people performing essential services who have to go to work–and don’t kid yourself, it isn’t only doctors, nurses, police, firefighters and EMTs who are performing essential services–it’s also your pharmacist, grocery store workers, sanitation workers, truck drivers, bus and train operators, etc. And people who have to get to the doctor for appointments that can’t be put off if we’re going to try to avoid needing an array of doctors, nurses, and hospital beds for non-Covid-19 related reasons.

There would never be a good year for a pandemic, but this timing feels particularly devastating. This is a life altering event. Fuck, this is a world altering event. On a personal level, Husband and Art Child, who would both always be vulnerable, are both at points where they have no reserves for their bodies to call on. Mother in Law, who’s at a stage where every year seems to take an exponential toll. Nerd Child is in his senior year of college, campus now closed, though he was able to successfully petition to stay because of extenuating circumstances. Great! Except eek! he’s still my heart, and I really, really hate having him far from me during this. Man Child, who is currently strong, healthy, and miraculously still employed for the moment, but don’t think for a second I’m not thinking about him having contracted viral meningitis less than two years ago.

I was still reeling, just beginning to process the medical mayhem of the last several months for our family when this virus hit the US. On a national level, when we have someone sitting in the Oval Office who doesn’t understand the definition of civil service, or science, or compassion. At a time when it couldn’t be more clear the US needs nationalized health care, the citizens are showing with every Democratic primary they don’t want it. Not enough, not yet. On an international level, with not only our country deciding they miss the good old days of nationalism and sanctified subjugation, and global climate change threatening everyone and everything.

I haven’t been able to focus to escape into reading. Or writing. Or querying. Can’t stress bake because my building has a gas leak, we will have no gas (means no stove/oven) for who knows how many months. I’m still doing my yoga every morning, checking in with friends through text, email, and social media, here at home we’re counting toilet paper squares but we have enough food. I’m hand washing and disinfecting and elbow sneezing, no-face-touching (iffy on that one, it’s freaking hard!), and you better believe there is no toilet licking. At this point no one in my immediate circle has or seems to have Covid-19, but way too much of this is out of my control.

So here we are, in the year of 1918 and 1929 decided to have a baby and call it 2020.

I am hanging in and hanging on, doing what needs to be done, but I’m not ok, how about you?

Is the Ceiling Caving In or Is the Sky Falling?

My natural state is a sluggish ball of anxiety, but I’m not someone prone to panic. Definitely not for medical related issues. But at this moment? Yeah, I’m…not panicking, but I am worried. And pissed off.

Yup, I’m talking about coronavirus, covid-19.

It isn’t ebola, but it is a big deal. A very big deal, for all of us. For some of us, the big deal will be in the form of disruption to daily life, economic repercussions, which are important. Not just vague ideas of stock market losses (I’d be the least qualified to even offer an opinion on the stock market). Lots and lots of us live on the financial edge. And if, like me and mine, you’ve already taken a financial hit this year because of medical mayhem or anything else, you can’t afford another. And for some of us, it’s a very big deal for health reasons, either for us individually or for loved ones who are vulnerable.

I felt like I was standing on the edge of a cliff, watching the spread of this virus over the last weeks, but still, the ground under me felt pretty stable. Be careful, do what’s within your control (have whatever supplies you can that you’d absolutely need in the house, wash your hands until they’re cracked and bleeding, etc). Yesterday, though, well. I am appalled at the number of comments I saw blowing this off, saying it’s no big deal, and who some of those comments were/are coming from. I mean sure, the red hat wearing folks who swallow whatever snake oil being sold by nutty televangelists and our vile, inept administration. Why would they believe in a highly communicable virus? A percentage of them believe the earth is flat. But I definitely wasn’t only seeing lol, look at the libs panic posts from that quadrant. I saw comments of this nature from people I generally respect as practical, thinking, caring human beings.

For most who contract this virus, it won’t be a big deal. No symptoms, mild symptoms, sick and miserable for a week or two and then all better. For anyone who is vulnerable, ie: seniors and or people with underlying health issues, it’s a very, very big deal. The truth is regular flu is a big deal for people who are immunocompromised. But the regular flu has a vaccine that many take, our systems are prepared for it, and it’s less communicable. I have three immunocompromised people in my immediate world. As in, living with me and/or I feed them, people who can’t just put off their annual checkup until this all gets under control, because they have to get to (and I take them to) multiple ologist offices (usually in hospitals) and labs every week. And when you live in a city– like oh, say, New York–you can’t avoid crowds as long as life is still happening. Social distance of 6 feet? Hahahahahaha! Any of my readers ever been on the subway here? The bus? A doctor’s office? A grocery store? A freaking elevator?

Nerd Child is in his senior year of college. Last night I received notice the school will basically be shutting down until who knows when. They explained their reasoning, and it’s frustrating and in some ways infuriating, but above all it’s fucking terrifying. His school is one of many finding themselves in this position. Does anyone think these fancy shmancy private colleges and universities would be shutting doors, switching to remote classes if there wasn’t such a good, science based reason it overrode both their mission and financial interests?

Italy is closed, for all intents and purposes. Closed. An entire, democratic, modern, western country. Closed. No travel in, out, around. My understanding from people there who live in northern Italy (people I know irl, not tweets from who knows who) are telling us they’re running out of hospital beds, ICUs are over capacity, the system has been overwhelmed. This isn’t some super secret insider info I’m getting. Read the papers, watch the news, listen to the damned scientists. Forget Ireland, Boston canceled its Saint Patricks Day parade (if you aren’t familiar with the demographics, this action would have been unimaginable up until two days ago).

But here? Once again, American exceptionalism overrides logic for too many. Ever been to an ER here during regular flu season? Overflowing, literally. More than once, twice, three times, I’ve been in various city ERs with a loved one for days, waiting for a bed. The extra fun part of this is that you’ve technically been admitted, so the ER staff is no longer responsible for the patient (keep in mind the ER staff is already overloaded with patients who are their responsibility), but you’re physically in the ER, so the staff that is? Not physically there on a regular basis. So sick enough to be admitted, yet treatment and attention is less than minimal.

Ever have someone you care about on a ventilator? It’s frightening. Scary to see, scary to think about the need for it, scary to think about what that machine is actually doing to keep your loved one alive, and then more frightening still every day they’re on it, because the longer someone is on a vent, the more difficult it is to get them off of it. You know what’s downright terrifying? The possibility of someone you care about needing to be on a vent and there are none available. Now multiply that one person by many.

Covid-19 is worldwide now. Even our lying American government admitted yesterday we are past the point of being able to contain this, it’s become about mitigation efforts, trying not to overwhelm our healthcare system with too many getting sick at once. America has 330 million people. Not everyone will get sick, and of those that do, again, for most it won’t be a big scary deal. That still leaves thousands, tens of thousands, maybe more, getting very, very sick, some fatally. Diabetes is a risk factor. Last I saw, there were something like 30 million people with diabetes in the US. Heart disease is a risk factor. 120 million people in this country with some form of heart disease. Being a senior citizen is a risk. 47 million seniors. Asthma. 25 million. Autoimmune Disease. 20 million. Cancer. About 600,000 people receive chemo each year. The umbrella of rare diseases and disorders. 25 million. Again, not every senior and/or person with underlying conditions will get Covid-19, and of those that do, not all will become need-a-hospital sick. And you can’t just add these numbers, many who have one risk factor are in several groups. But that still leaves us looking at a very large number, with finite, limited resources.

Because guess what? While this coronavirus is spreading, people will still get sick with cancer, pneumonia not caused by this particular virus, the flu, have heart attacks, strokes, need pacemakers, need new heart valves, develop pancreatitis, need amputations because of diabetes, have serious accidents, have babies, all the million and one things that land people in the hospital, requiring emergency treatment and admission on any given day.

There are fewer than 1 million hospital beds in the US. There are 62,000 ventilators. I’m no math wizard but…

Our government, here in the US, has not done us any favors by fudging the numbers by not testing, being slow to develop tests, and focusing solely on the economics (and here, mostly for the corporations and wealthy, this administration couldn’t be more clear they don’t give a shit about the dish washer in back of your local diner who doesn’t have sick days, health insurance, and will be afraid to go to the hospital and find themselves in the custody of ICE) and not the health and human factors. Hell, we have elected officials who were making jokes and blowing this off who are now self-quarantined.

You can tell me not to panic, and you’d be right. Panic helps no one and nothing, and much of this is out of our control. Scientists are doing their thing, working on developing a vaccine, and it will take time. Time and a toll on many.

But don’t you dare fucking tell me it’s no big deal.

Where Have Those Damned Words Gone?

Sunrise over the East River

I’ll say one thing for all of our recent time in the hospital, they have the best damned views in the city. Most of my photos have weird shadows and reflections because of the double paned windows combined with my terrible photo taking skills when using the phone, but hey, I’ve woken up to worse.

Scary hospital stays are scary. How’s that for profound blathering? And when faced with these stays, we are a family that talks around things, jokes about them, because we do. I don’t want to cry any more than when I absolutely can’t hold it in, leaves me with one of those vicious migraines that have teeth and nausea every time, and hospital security gets really testy when you stand in the halls and scream profanities. In the past, I’d tell Husband I appreciated the vacation, but next time let’s pick a better hotel. These last few times, well. This is a fancy shmancy hospital, with tvs larger than the wall our living room tv hangs on. I told him it was the nicest hotel he’d ever taken me to. That was the joke, over and over with each new nurse, each new visitor. Not all that funny the first time, less so every time I said it, but again, wtf else am I going to say?

Words may be my thing, reading and writing them, but I lose them when I most need them just like a cab driver trying to explain in his third language that the crumpled fender of the car in front of his isn’t his fault.

In November I began reading a novel I had long been waiting for, and it’s truly rare for me to buy a book at full price. I wish I could more often to support authors, but my budget is limited and I read a lot. This one, though, I had to. Erin Morgenstern. There are many authors I admire for different strengths, and her strength is incredibly lush sentences I just get lost in. Nevertheless, I stopped reading once Husband was admitted because I just couldn’t relax into those opulent, fantastical dreams on the page. Nothing I can imagine myself writing.

Because my words are wrong, too raw. Too many shadows and distorted reflections that gauge their way out of my mouth with teeth and claws.

This morning I finished the novel. It didn’t inspire me to write anything beautiful, say anything beautiful, but I did bake an apple pie with all the cinnamon my heart desires, on top of a puff pastry crust with a layer of cheesecake in between, as close as I get to lush. Five minutes ago–as I was writing this–Husband’s doctor called, we’re looking at another inpatient stay next week.

People are Stupid. Love, Mom

Rodin at The Met

Every home, every family unit, has their own rules–what’s out of bounds to say or do, particularly when there are children in that unit. For us, the absolute no-go was stupid. We never used the word to or about our kids, nope, not even kidding around, and there was a no-tolerance policy regarding them using the word about themselves, each other, or anyone else.

You won’t be surprised to learn that in our home, cursing (English, Spanish, or sorry to say, Spanglish) was not automatically against the rules. Yes, we wanted them to understand some words (ie, curse words) were offensive to some people, and wholly inappropriate in some settings, but we never pretended shock or offense on our own behalf. Everyone’s got their own things, right? We were also ok with movies or video games that had some cursing/sexy scenes (no, I’m not talking about when they were toddlers here), but graphic violence was out. I don’t know if he remembers, but at the age of six my oldest, already reasonably well versed in museums and the nude art to be found on display, was traumatized when he was at a friend’s house and they had a sculpture from this biblical scene:

Judith with the Head of Holofernes, ca. 1530, Cranach

So, we tried to teach the kids that words are powerful and important, to be explored yet respected, but violence and harm to others was never, ever ok. For whatever reason, the idea that certain words were not to be used in certain settings, or in front of certain people, was more easily learned for the English curses than the Spanish ones. I may have told the following story before, if so and you’ve read it, sorry, I’ve been running Mrs Fringe a long time.

When Art Child was five, we experienced her first hospitalization, and after approximately 8,000,000 days in the PICU, she was doing much better and the team was deciding whether she could be discharged or sent to a step-down room. Her main nurse argued with the resident on the unit not to remove her IV yet in case bloodwork was needed for the decision (if you’re unfamiliar with this stuff, if the IV is in place they don’t have to do another “stick”, they can draw blood right from it), the resident insisted she remove the IV. Needless to say after it was removed the team said one last blood draw was required. I was pissed, the nurse was pissed. The resident said she’d do the draw herself so we didn’t have to wait for the phlebotomy team, and the girl was furious. She was a passionate kiddo to begin with, very verbal, and so she cursed the resident. Resident chuckled, “it’s ok, you can call me a dodo head, I’ve been called worse.” Nice, right? She was trying to atone, but clearly confused by the fact that the (Latina) nurse and I weren’t chuckling, we were downright cracking up. Because the girl hadn’t called her a dodo head, she called her a toto head (see the earlier apology for my home’s Spanish/English mixing). Toto is Spanish slang for–so as not to offend anyone’s delicate sensibilities–girly bits.

She didn’t, however, call her stupid.

But, well, here we are, living in a time where misogyny, racial slurs and racist ideas/ideals are not only considered acceptable by the White House, but these ignorant slurs and ideas are being used to create racist policies. So no, the fact that our so-called President used the term shithole neither surprises nor offends me; but that it was used in reference to large swaths of the world, millions and millions of people because they have brown or black skin, offends me greatly. He knows what he meant, his supporters know what he meant. That shit isn’t a dog whistle it’s a shrieking tornado alarm, heard across the world. This isn’t cursing, this is verbal violence.

His millions of supporters? And if you’re one who hasn’t jumped on the bandwagon to use slurs yourself, but are remaining silent, shrugging it off, you’re one of them–are stupid. Not merely stupid for spouting, believing, and/or accepting ignorant nonsense, but stupid because odds are you’re next. He didn’t say, “why can’t we have more immigrants from China, from Argentina, from Italy, from Israel, Japan, from Ireland, from Poland?” No. He said, “why can’t we have more immigrants from Norway?” I haven’t met too many people from Norway and I’ve never been. The few I have met were only here temporarily for work or on vacation. I’m sure they’re a lovely people across the board, god knows I’d love their health care and if I had their social safety net I wouldn’t want to emigrate anywhere else, either. Norway. Whiter than white. Think about that, and think about who and how many ethnic groups are not part of that Aryan wet dream. It doesn’t matter who you voted for, if you’re American, odds are you/your ancestors are not all part of that purity test. I’ve been saying this for over two years now; it will not stop on it’s own. Ignorance feeds ignorance, and hatred feeds hatred. Once you say it’s ok to slander, take away rights, human dignity, to hate one group, it’s going to be ok to strip rights from the next group, and the next. And if you’re a woman, well, it doesn’t matter what your ethnic background is, if this continues unchecked and the GOP doesn’t find an actual ethics compass we’re fucked regardless.

For most of us, those of us born without millions of dollars at our disposal and/or the protection of aristocracy (real or implied) life is hard, and we face hardships that cannot be avoided. Some find their homes and communities lost to hurricanes or earthquakes, their life savings and opportunities stolen by corrupt officials, their loved ones and countries torn apart by wars, the victims of hundreds of years of systemic oppression; or some find themselves the victims of smaller, personal yet still devastating effects of catastrophic illness for themselves, or their children fighting incurable diseases, or an industry gone belly up so they can’t find a job that allows them to support themselves or their families, or the victims of random, violent crimes. These are the suck of life, things that are generally out of our control, yet we have the responsibilities inherent in figuring out how to make it through, or how to make it easier for our loved ones to make it through. But this? The position America is in now? This was in our control, and to some degree, it still is. This was a choice. A choice to make it harder, dangerous, impossible for millions and millions of human beings, a choice that purposefully ignored and distorted this concept of “other.”

So yeah, people aren’t just hateful, or racist, or toto heads. People are stupid.

How Do You Measure a Year?

Seemed appropriate to keep the tree both small and bare this year.

Am I the only one who considers the soundtrack of Rent to be Christmas music? Seems more apt than ever this year, when marginalized people across America have been told they don’t count, and laws and policies are being put in place to ensure this. Like, yanno, women. And brown people. And poor people. And young people. And old people. And the middle class. And the LGBTQ community. I’m not sure how all these people add up to a minority, but hey, math was never my strong point.

I hope everyone is finding some peace this season as we head into the new year. 2017 was one dumpster fire after another, wasn’t it? Plain old ugly. I’d like to believe 2018 will be different, but I’m not seeing anything to indicate that will be the case. Hell, as I was sitting and listening to Rent, I saw this bit in the news. Who needs to address HIV/AIDS? It isn’t like it impacts everyone, or matters for people to have access to healthcare. Yeah, I’m not expecting any miracles this year.

I’m not about beauty. Sure, I appreciate the look of a rose, but they make me sneeze, make my eyes water in ugly ways. I don’t like pretty poetry, don’t write beautiful characters, I can’t help it. It’s my nature to look at a scene–real or imagined–and be captured by what happened to create it; what went wrong, what’s about to go wrong, and find the scars and stretch marks we carry on the inside and out to be more interesting than a straight nose or flawless complexion.

I’ve always been about small moments, firmly believe these are what make a life; good, bad, or indifferent. A couple of weeks back, Art Child and I went to the Columbus Circle holiday market. We go every year, all kinds of local (and not so local) artists, artisans, and crafts. This year we weren’t shopping so much as just looking. This year more than ever the plan for gifts was about practicality and needs over anything else. It was freezing the day we went, and I wasn’t dressed for it because outdoor shopping hadn’t been the plan, so mostly I was breathing into the neck of my coat, trying to keep warm while hurrying the girl along. I paid attention to exactly one booth. I’m sure I must have seen them before, but this year it overrode the cold and made me stop. Peacebomb jewelry. Aluminum shrapnel from bombs dropped in Laos fifty years ago–by America during the Vietnam War, recast into bits of hope, bits of reclaiming what is ugly and destructive and turning them into beauty. I loved this.

Apparently I loved it so much Husband remembered. I can say without guilt or hesitation I didn’t ask or hint for him to go and get me something from them. Number 1, they’re out of budget. Number 2, we’re supposed to be focusing on the practical. I was so shocked, these were so the perfect gift to close this shitbomb of a year…it’s possible I scared our kids–I cried. I don’t think I’ve ever cried upon opening a gift before, and wouldn’t imagine ever doing so for any reason, but there you have it. Yes, I was surprised that Husband would remember me telling him about this organization and these artists. Yes, I was completely touched that he went down to the booths, searched out this one, and chose not only to purchase something from them, but a pair of earrings I would definitely choose for myself, but also something more. Dangling hope on hooks.

Not hope of magic rescue, or turning back the clock or turning over the election. That ship has sailed, and the damage is too real; ensconced in our government, new laws and overturning of regulations, sitting on judge’s benches for lifetime appointments. Frightening and most damaging of all, the realization and illustration of how vulnerable our democracy and democratic norms are. But hope that someday my children, your children, our collective grandchildren, will dig up these bombs and craft something beautiful out of them.

Happy Holidays, everyone. Whatever you do or don’t celebrate, I’m wishing all small moments of peace and hope in the New Year.

Can We Not? aka Too Soon

Want pretty? Have a flower.

As the ugliness that is our country’s new day to day grows more gruesome I find myself spending more time cruising Twitter. Maybe it’s the opportunity to ingest the day’s horrors in nibbles, I don’t know.

Last night I read the news about John McCain being diagnosed with a brain tumor. I’m sorry to hear this, for him and his family. I don’t like his politics, was horrified by and still believe he opened the door to our current administration by choosing Sarah Palin as his running mate in 2008. I lost whatever respect I might have had left when he got on board to support 45 despite knowing he was unqualified and being publicly disrespected by him (which in turn disparaged all our veterans and troops); supporting and voting for his extremist and unqualified nominees while purporting to be a moderate. He’s still a human being facing a painful and difficult path, and I don’t have it in me to actively wish anyone harm.

That said, I was surfing a little while ago and a Tweet popped up in my feed, imploring us not to politicize McCain’s cancer. Really? Maybe if I was a saint, or at least more highly evolved, I could agree with this. I understand the sentiment behind it, and it certainly sounds reasonable in 140 characters or less. Maybe if I wasn’t spending every fucking minute of every fucking day worrying about Art Child and Husband, what can/will happen if 45 and the GOP (of which McCain is a member) have their way with health care.

I’m sorry, but the reality is this is political. John McCain is a political figure, by choice–and a powerful one, whose voice is influential and whose votes have had an impact on all of us. He’s now got an aggressive type of brain cancer, a tumor known as a glioblastoma that is likely to have a poor outcome regardless of treatment and health insurance. I wish him the best possible outcome because he’s a human being, and I am, too. Because he has good health insurance and because he’s a senator he does have treatment options (and will regardless of how/what the Senate decides for the rest of us), and if the worst occurs, those options will include excellent palliative care and a measure of dignity. That’s political, and it will remain so until and unless we all have the same excellent and affordable healthcare with appropriate support and funding for science, research, and medical advances.

I’ve been quiet on the blog because I understand how very boring it is to my readers to hear me rant repeatedly about health care– why it’s important for all and why it’s personal for me. So many personal stories going around the various news outlets and social media platforms, my story is no more or less meaningful than anyone else’s, and I’ve already shared what I’m willing to.

And honestly, I’m uncomfortable with the way these stories have been shared recently, the stress on photos of beautiful children who need their healthcare, Grandma in a coma lying in a hospital bed paid for by Medicaid who’s being told she should just get a job. Is this supposed to show the cutest kiddos deserve treatment? What if kiddo X isn’t considered beautiful by all who see them? Or are the effective photos the ones that show the kiddos with the most tubes, the most pills? What about kiddos with invisible disorders? I understand these photos are meant to personalize the potential impact of these proposed health care regulations. I just don’t believe that isn’t already understood by the GOP. They know how many will be hurt, and in how many ways, they know how many will die–they don’t care. How easy it is for these photos of beautiful (because yes, I believe they are all beautiful) children to be coopted by people who don’t care about any child’s plight, with flat-earthers (boy was I shocked to find out this is a real thing) posting ignorant, disgustingly callous comments or hurtful memes.

Maybe this is yet another example of how slow-witted I can be, or what a downright bitch I am, but I don’t see how Senator McCain’s medical needs are sacred while those of my family, my loved ones, and the millions of others in this country who need to keep their health insurance are political. I can wish him well while reminding him and his peers their votes, words, and actions are actively harming the rest of us.

Zero to Hero: Or Not

I know, I know, I haven’t been around. First I was writing, which felt shockingly excellent. Then I got sick, the flu maybe, which sucked. Naturally after I got sick, Art Child got very sick, and the battery for my camera has died, which means no new photos, and before I can blink, weeks have gone by without even considering a post, and a whopping dose of the blues, which means you didn’t want to hear from me anyway. Trust me.

The other day I was web surfing, and came upon what looks to be a reputable writer’s conference that will be here in the city this summer. Sure I haven’t opened the Mess-In-Progress in weeks, I’m not quite sure how I’ll work out the money or the logistics but ooh! I’m considering it. Maybe it will be motivating. Inspiring. Humbling. Humiliating. Yeah, maybe I’ll put that thought to the side for now.

Why am I blogging today? I’m not sure. Maybe because I feel like howling at the universe, but apartment life means no howling allowed. This is not a mom blog, or a special needs parenting blog. I do talk about my kids a fair amount because they’re a huge part of my life, but as I’ve said many times, Mrs Fringe is my spot to be me–all of me; the good, the bad, and the wacky.

I know Jimmy Kimmel did a beautiful job talking about all of this the other day. Heartfelt, honest, a perfect blend of hope and honesty, and I truly thank him for using his platform to talk about families who don’t have millions tuning in to their words, have millions cheering them on and praying for them. Even I teared up as I watched. He had a layer I don’t have anymore, that newness, that shock of how-did-I-get-here?

In parenting, there are moments that make your heart stop. I like to think I’m pretty good in moments of crisis, it’s afterwards, when you have time to think and breathe, when I’ll feel it most. But yeah, there are those moments where no matter that part of your brain is telling you to move, to speak, to take action, to take a breath…the lobe that’s in control in that one moment is frozen. I don’t know about anyone else, but for me, it hasn’t always been a huge crisis that prompts this, it’s the neat and perfect dovetailing of implications, suddenly unavoidable.

“Mom, the dark’s been darker than usual.” My heart, my brain, my fucking everything stopped when I heard that. Of course I needed to hear it, I need to know this, but I don’t want to. For the past several months, we’ve been seeing more specialists and adding meds to deal with the issue that’s come up with Art Child’s eyes. I can and will do everything possible to preserve her vision. We’ve been doing everything possible, knowing the odds are ugly, to say the least. And then I heard that statement. And the next day she came home with a different edition of a book she’s been reading because “the letters are bigger.”

And then I went online and read about the latest round of “How the GOP is trying to kill the citizens of America and torture the most vulnerable.” Excellent. Even better, the individual statements of Reps and 45 supporters saying things like people who live “good lives” and “do things the right way” should pay less than those with pre-existing conditions. As another med-needs-mom friend of mine put it, yeah, if only our fetuses hadn’t been drinking and whoring while in the womb, they wouldn’t have those pre-existing conditions. If you don’t have experience with this stuff, let me say sometimes I think it’s a freaking miracle that the majority of babies are born healthy and neuro-typical, because yes, there are that many things that can and too often do go wrong. Another pro-tip for you, everything is genetic. Everything. And most of us will, at some point, develop something considered a pre-existing condition, because it’s coded into our genes. Or we’ll have an accident that will have lasting repercussions. Or old age.

So on one side we’ve got the people who are totally cool with anyone with treatable health issues dying because they can’t afford health care. On the other side (and sometimes, oddly enough, there’s crossover) there are the people who know they and their family were really lucky with the genetic jackpot, and they say things like, “I don’t know how you do it. You’re a hero. Your child is a hero.” Now, I get the whole hero thing when you’re trying to explain to a very small child who’s ill. “You’re a superhero! You’re going to kick cancer’s butt! Slaying cystic fibrosis! Show those seizures who’s boss!” And I know there are some medical needs parents who find it helpful to think of their children (maybe even themselves, but I haven’t heard that regularly) as heroic in the fight against *insert cause(s) here*. Or they believe they/their children were chosen. I’m too cynical for this, and frankly, it neither makes me feel better nor gives me strength to make the next phone call, agree to the next med that includes “may cause death” in the list of side effects.

I’m a regular old gal. Really. If you walked past me on the street, well, you’d walk past. Normal. Regular. Average. You might notice Art Child because she’s fabulous and beautiful, but that might be my bias talking. You’d probably walk past her too. And my boys. Man boys, who do indeed have ten extra levels of strength, calm, and compassion because they grew up in a house with medical needs. But you’d walk past them. And that’s all okay. I love a good cape, and so does the girl, but I feel no need to slap on a mask and gadget belt. I just don’t want to be a villain, either, for wanting the best possible chance for the best possible outcome for my child.

Magical Thinking

Reality or Magical–What do you see?

Yes, it’s been a while. Again. First I was working on a post that’s still sitting in my drafts folder because I couldn’t beat the words into sense, and then life. Blah blah, medical mayhem, lots of waiting rooms and doctor’s offices, suffice it to say I’m pretty sure any vision test I take from this point forward is null and void– I’ve seen so many while sitting with my girl, I’ve got every chart memorized. Thank you, my fellow Dems/Liberals for being diligent and insisting on being heard about how disastrous the proposed health care bill was, and thank you, GOP, for being in such a mess that you’ve had to put your we-want-you-to-suffer-painfully plans on hold so I can keep doing this.

And oh yes, I’m writing again. A secret unless you a) read this blog post or b) follow my twitter feed (which you should, because on the thrice annual occasion that I remember to log on, I retweet with the best of them). It might be more accurate to say I’m rewriting, because this isn’t a glittery new project, this is the rusty old wreck I tabled a few years back that I’ve already talked about reworking. I figure I *might* be able to use half of what was there, and overall I don’t yet know if I’m taking something that was meh and making it better, or taking something that was meh and puking weird and unidentifiable bits of acid all over it.

Takes a bit of magical thinking to write a novel, regardless of genre. More than a bit if you’re writing with an eye towards publication. If you’re looking at trade publishing (as in–not self-publishing) I’m pretty sure the odds are 843,000,000,000 to one. A couple of years back I blogged about the need for big brass ones in order to believe this could be done. Despite regular polishing of my metaphorical testicles, here I am, still one of the unwashed and unpublished wannabe novelists. Clearly, in addition to working diligently on the MIP (Mess in Progress, since I’m still unsure if I can call it a Work in Progress) the answer is to sprinkle some eye of newt into my word cauldron, maybe wave a bit of sage, and wear my very pointiest hat.

Whatever we’re wishing for, I think most of us engage in a bit of magical thinking. Like, say, this woman. This is a hell of a story, an excellent snapshot of why supporting 45 and his merry band of fascists was a bad idea. She’s an American citizen married to a not-quite-undocumented Mexican immigrant. She voted for our current regime, because she thought they only meant they would deport the “bad ones.” Her husband wasn’t in hiding, checked in with ICE when he was supposed to, gainfully employed, paid taxes, legit, provisional Social Security number. Needless to say he is currently in jail awaiting deportation because ‘Murica. I’ve seen a lot of people comment on this story, some gleeful at her comeuppance, some who feel sorry for her. Me? Shrug. I take no pleasure in what has to be a painful and terrifying experience for her husband and their children, but I don’t feel sorry for her. He was very clear about his beliefs and vision, started his whole damned campaign with racial slurs about Mexican immigrants. This is an example of dangerous magical thinking; belief that no one can see you behind a clear shower curtain, that it’s ok and safe to wish harm on others; ok to strip rights, dignity, even humanity because other.

There were never any real plans offered by this President and his administration regarding how they would make things great. The closest they came to concrete plans involved who they were going to vilify, and how he could do whatever he wanted while keeping his supporters and increasing his net worth. His net worth, not yours. I’ve said this many times already, once you say it’s okay to dehumanize this group and that group, it’s a guarantee that more groups will be added to that list, and yours will surely be added sooner or later. I hope no one reading this is surprised and hurt to discover this, but 45 and his cronies don’t see you as a human being. You were a vote. If you voted for him, he’s done with you, if you didn’t, you never existed in the first place. Let’s go back to that disastrous bill, HurryUpandDieCare. This is from a meeting on Thursday night, with a no holds barred attempts to squeeze votes out of those who thought it was still too generous a plan. “Forget about the little shit.” The little shit is you, me, and the woman from Indiana whose husband is sitting jail.

A little magical thinking might carry me through months of work on this MIP, enough to (hopefully) craft a cohesive and interesting story, maybe adding the tears of a baby dragon will get me through the querying process. It won’t get me published. Magical thinking got 45 and company into office, it won’t make them responsible, compassionate, or skilled–and it surely won’t protect us from the damage.

Do the Right–Wrong!

Because what else would have been the perfect gift for Mrs Fringe on Inauguration Day, 2017? Thank you!

I’ve had this thought circling in my head for the past few weeks. I talked about it a bit with Nerd Child before he went back to school last week, and today it seemed appropriate for musing on the blog after 1 full week of Trump & Co in office. Yeah, I know, this isn’t a mom-blog and I already talk an awful lot about my kiddos, but bear with me, please.

Husband and I have always tried to do our best. We knew that wouldn’t always work out as intended, but still, parenting is a commitment we take seriously. A commitment to our children, but also a commitment to society. We do our best, and hopefully offer decent, kind, well-adjusted human beings who care about others, themselves (raising saints and martyrs was never our goal), and the world at large. How’s that for overblown navel gazing? And yeah, we want success for them. Success doesn’t have to mean a job making a bazillion dollars a year on Wall Street, but for us it means that in addition to doing something they feel good about, we wanted them to understand it’s important to be able to pay your bills, and do better than we have, a little more comfort, maybe even own a house.

But have we screwed them in the process? I’m looking around, taking stock of the past week, who’s taken office, been nominated, being confirmed despite (because of) no experience, no compassion, conflicts of interest galore and long documented overt racism; running the country, deciding to rip apart the social contract we’ve been building and trying to improve for over two hundred years…. Sure, greed, corporations, and selfishness have long been valued in our society. It isn’t brand new, the results of this election didn’t come from nowhere, regardless of how many want to pretend it has. There has also long been room for success from those who actually want to contribute, work with others.

Remember? One of the first things we all teach all children is the importance of sharing, waiting our turn. Husband and I taught our kiddos to do the right thing because it’s right, not because they might get in trouble, not even because of an afterlife. But because this life matters, and every life of every person matters. Trite but true, at the end of the day, can you look in the mirror? This week has shown us a whole different world. At first I typed new. A new world. It isn’t though, is it?

Today happens to be International Holocaust Remembrance Day. And today, Nikki Haley, the new US ambassador to the United Nations, addressed the UN and said, “for those who don’t have our backs, we’re taking names.” Trump is signing executive orders to begin building That Ridiculous Wall (the one that still makes zero sense), still discussing a registry for Muslims, will restrict incoming Muslim immigrants (unless they’re from Muslim countries his companies do business with), and is denying entry to Syrian refugees. No, not new at all. No wonder they’re so enamored of that fascist “America First” slogan.

And by the way, in case you’re thinking all of this is being done in a (misguided) attempt to actually protect American citizens, ha! This is the sneak-peak proof that this administration and the GOP couldn’t care less how many citizens are left without adequate healthcare in this country. Why let people know they still have a few days left to sign up for a year’s worth of care? Sure the ads were already in place and paid for, but, well, fuck ’em. I can’t address the beginning of the dismantling of women’s rights and health care in this country. Not yet.

So yes, in with all the other worries and panicking I’m doing about medicine and health care and civil rights and ohmygodhehasthefuckingnuclearcodes, I’m worrying about my kiddos; if they are prepared for this next page in American history, where might makes right and sharing their cookies is a notion as quaint and outdated as teaching them to use a quill.

Much of me is overwhelmed right now, certain we have said goodbye to American freedoms, the true American values of equality, justice, social mobility, education, progress, and democracy. We haven’t always hit those marks, and there’s no question and no excuse– our “equality” hasn’t been equal, but we ~~have~~ had gotten better. Now I have to believe we didn’t do them a disservice when we taught our kids they have to be able to look in the mirror, and I have to hope the mirrors they look into are true and clear.