medical mayhem

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.

Say. The. Words.

Come now. You–and I’m talking to you, 45, GOP, Fox News, et al–and I both know what it is you aren’t saying out loud. I have no special mind reading powers, we ALL know what you mean. So say it.

When you state the cure (social distancing, purposeful slow down of the economy) is worse than the disease, you’re saying your stocks and bank accounts are worth more than people’s lives. Hell, Tmp doesn’t even care about the economy of the country (outside of wanting to see big numbers, YUGE), he cares about his personal bank accounts and businesses.

Let’s put to the side that this makes no sense in terms of basic, surface logic. I mean, if 40-70% of the population is sick, dying, overwhelming the health care system, how great is the economy going to be? Who will be buying shit? working? The wealthy, but contrary to popular GOP opinion, the wealthy aren’t enough to keep the economy going.

When you say grandparents are willing to die for the economic health of their grandchildren, you aren’t only talking about grandparents who are 90+. You’re talking about everyone over the age of 60. You’re talking about the…what? one million? two million? grandparents in the US who are currently raising their grandchildren. You’re talking about all of the vulnerable population regardless of age, due to cancer, asthma, diabetes, heart disease, autoimmune disorders, homeless, incarcerated, hospitalized for other illnesses or injuries. For all the nonsense war analogies, this isn’t war, no one is pointing a gun at people in a particular uniform. It’s a virus, not checking to see which flag you’re waving, or the date of your birth certificate, before penetrating cells. You know it. I know it. We all know it. I guess you’re assuming your wealth will protect you from dying, despite your advanced age. Statistically your odds are better than the average Joe retiree, the fact that you can access a Covid-19 test, and access it before you’re at death’s door–will automatically tip the scales your way, so not a delusional thought, though of course, no guarantee.

It is no surprise this administration has created such a dangerous scenario with its mishandling of this pandemic. It is no surprise you were unprepared and unwilling to do or say anything to upset Dear Leader, point out his lack of clothing or unwashed, groping hands. It is no surprise the cult following still standing behind this administration will throw themselves on the proverbial funeral pyre in order to stay in line and protect him, sacrifice millions–including themselves, because many of them are not only among the most vulnerable because of age, health, and economic status, but those sparsely populated red states–very limited access to health care even without a pandemic. No surprise at all. We knew it the day the GOP fell in behind Tmp as their nominee in 2016, when millions voted for him knowing what he did/didn’t stand for, what he did/didn’t understand, or care about.

I understand that doctors in some countries have had to make these types of decisions that place a value on each life because of limited supplies and equipment. I understand it may come to that in certain regions of the US. My heart goes out to the patients and their loved ones and the doctors. People go into medicine for a variety of reasons, some altruistic, some not, but I don’t know of any who go into it in order to be placed in these types of positions. A doctor, a panel of doctors, making these impossible decisions based on the best science and information available to them in the moment is a very different thing than a government making these types of decisions not because of last resort, but because money is worth more than lives–as evidenced by discussion of decisions that will increase the number of human beings who will become seriously ill, with a percentage of those dying.

Frankly, I am very willing to sacrifice myself for my family. If there is one ventilator available, and I and another member of my family need it to live, don’t hesitate. Save my children, my husband, my mother in law. But that is a personal choice. I will not decide your life has less value than mine. I do not believe the lives of my family, my friends, even myself, are worth less than the lives of the uberwealthy nervous only because of the worth of their stocks. So go ahead, you cowards, blustering behind your stock market charts from under the shadow of your red ball caps. Use your words. Tell me it’s worth it to you to take the life of my 18 year old immunocompromised kiddo. My late 50s husband who has worked his entire life, paid taxes, cared about others, raised three very fine children, isn’t done with life yet, and is more upset by the term unemployed than he was facing a rare and risky open heart surgery.

Reopening everything, ordering people back to work, will not save the economy. It will kill people unnecessarily. Seniors, yes. Also health care workers, middle aged people, young people, maybe even pregnant people–and we all know how much you care about life pre-birth. I understand this, and you do, too. Fucking say it.

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.

 

 

Let’s Chat, Shall We?

Come, sit, I’ve poured you a fresh cup of my favorite tea.

I was going to avoid political talk for a little longer, but that seems unrealistic these days, doesn’t it? Actually, it feels irresponsible to avoid it completely if you have any type of platform, no matter how small. I’m not going to address last night’s performance piece of a State of the Union speech, I’m going to focus in a bit more. On health care. Yeah, that old topic. You’d think we’d have exhausted and put it to bed by the year 2020, but far from it.

So. When I was a kiddo in the wilds of south Brooklyn, everyone knew one other kiddo whose dad had died in his thirties or forties–maybe when we were a little older, in his fifties–from a massive heart attack. Shoveling snow, working construction, running to catch the train, maybe eating Sunday dinner. “So young,” it would be whispered. It happened, and really, outside of the immediate family/friend circle, it wasn’t all that shocking, because it happened. Not frequently, but. Actually, it often wasn’t all that shocking within the circle either, because more than half the time you’d hear the same had happened to Grandpa/Uncle/Cousin. Genetics, though then we’d say “it runs in the family,” like freckles or broad hips.

We also all knew at least one someone whose Grandma/Grandpa lived with them, but you didn’t know until you’d been to their house or apartment twelve times, because Gramps was hidden in the basement or a back room. Gran was creepy, with an odd lurch to her step and slurred speech in the brief periods that she was awake and banging for dinner. Sounds like the setup to a gothic novel, doesn’t it? No, an elderly person post-stroke, with a poor or working class family who couldn’t afford home health attendants or a decent nursing home. There was social security and medicare, but it didn’t cover enough for many families who couldn’t supplement.

Now we hear, “So young!” when someone dies at 75. Because health care is better, and more broadly available. Not for everyone, not enough, but certainly better. The 43 year old who has nausea and sharp jaw pain goes to her cardiologist and gets a stress test, the 38 year old with chest pains goes to the ER and has an angio resulting in a drug eluding stent placed to unclog his left anterior descending artery. True, pollution was much worse (in our air and water) and everyone smoked, but it’s now rare to hear of someone under the age of 70 who had rheumatic fever as a child leaving them with cardiac issues, and the number of people living with diabetes has skyrocketed. Oh, you didn’t know diabetes is actually a multi-systemic, devastating disorder?

When the Affordable Care Act was passed, things improved for many. Medicaid was expanded, adult children could stay on parents’ health care plans until age 26 (so important in this age of shrinking unions and gig economy), lifetime caps were eliminated. If you don’t think the elimination of lifetime caps is a big deal, congrats! Your life has been charmed. Annual caps were eliminated (also, a really big issue for anyone dealing with chronic disease). Insurers were no longer allowed to deny coverage to people with preexisting conditions, insurers were no longer allowed to jack up the rates for those with preexisting conditions (making health insurance unattainable), preventative health care had to be covered, garbage plans that basically offered no protections were banned. Was the ACA enough? No. Was it still too expensive for too many? Yes. Are there too many doctors who don’t accept ACA plans? Yup. But it was better than what we had before. Much better for many, and a huge step in the right direction for all.

One of the first things this administration and GOP did was try to roll back the ACA. By the grace of John McCain (there’s a phrase I never expected to type) and the huge push of constituents nationwide, they were defeated.

Well, guess what? They’ve been successfully chipping away at it ever since. The individual mandate has been eliminated. States were allowed to tie work requirements to Medicaid (now in court, but so far tens of thousands have been kicked off Medicaid in Arkansas). Access to garbage (called short term or skinny plans) was expanded. And now, right now, this administration is in court, trying to take away protections for those with preexisting conditions. Of course, this President spews lies about this along with everything else. Why does he lie so much? Because he can. Because he gets away with it. Because of his supporters, many aren’t informed enough to know he’s in court trying to take away their healthy care–and savvy enough to tell SCOTUS not to hurry to hear the case, wait until after the 2020 election. A number of his supporters know and don’t care, they’d rather lose their own protections and health care than know one of those others is getting a bypass in the operating room next door.

My personal favorite (and by favorite I mean drooling/sobbing/ready to throw myself off the terrace) is when I see/hear people who continue to support this administration and President because who knows why, but they know it’s ok, and they’ll be ok, because they aren’t like those greedy libs who want entitlements. Sure they want and need their Social Security and Medicare, but those aren’t entitlements. Oops. But come November, they’ll still vote for him. Why? Because in the meantime he’ll lie, and they’ll swallow those lies because they want to, and really, when you think about it, maybe Uncle Joe’s had a good run after all.

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.

Uncomfortably Numb

have you heard me screaming? I tried to do it quietly.

Well. Pretty much skipped 2019, didn’t I? Wish I could say that was true outside of the blogosphere, but life is what it is. Yesterday I saw this Tweet and this response and I thought, yes. Immediately followed by, maybe. I began this blog not expecting anyone to find it, and that was ok. I did it for me, and along the way gathered some followers, made some friends, connected with more than I had any right to expect. Mrs Fringe was a space for me to be not just mom/wife/dogwalker/reefer/writer/bitch/feminist/New Yorker, but the sum of those parts; a person (albeit a somewhat anonymous and edited one). It turned out great and perfect in all the ways for a long time, until it wasn’t, so I hit pause. I think I’m hitting the play button again, but life happens, so who knows.

How was your 2019? Mine was overall shit, with some wonderful bright spots. Art Child graduated from high school. Whee, I’m done, done, done with the public school system! That New Thing I was working on? I kept working, wrote to The End, and I’m pretty fucking proud of it. All the old qualifiers apply, no clue if anyone in the industry will like it/want it, but there you have it. I even went to a writers’ conference last summer and pitched it to a few agents, have done some limited querying, getting some interest. We’ll see. Hope for the best, expect the worst, blah blah blah.

The past couple of weeks on Twitter, reading my timeline I’ve just felt old. All these youthful, positive posts cataloguing the past decade in accomplishments, earnestly seeing the beginning of a new decade as something. There have been many New Years where my overriding thought has been wow, this past year kicked my ass. This year is not only not an exception, but I don’t even feel human anymore. When I tried to think about the decade gone, my mind started ticking off medical emergencies. The last 14? 15? years have been a twisted game of lurching from emergency to emergency, and 2019 will take its place up there in the top three. In the hospital with Husband, and then Mother-in-Law, and then Husband, and then Husband, and then Husband, and oh fuck the kids, MIL and I pretty much spent six months alternately holding our breaths and checking his, and then I spent most of the past two months inpatient with him.

All this time immersed in the world of medical interventions and I’ve learned four things really, really well. One: human beings aren’t designed for this level of sustained stress. Two: for every major medical intervention, there is a price to be paid–both physical and psychological–the more complex the intervention the higher the price, and you better believe this isn’t one of those no money down deals, they want that arm, leg, or kidney upfucking front. Three: I know who does or does not have real experience in the world of complex, chronic medical needs within ten seconds; by their understanding–or lack thereof–of what the actual, literal, monetary cost of our fucked American healthcare system is (if you’re reading this and you’re one of those mythical Americans who love your health insurance, all I can say is how nice for you, you’ve lived a charmed life with the luck of good genes), and what actually is/is not realistic to expect in terms of healing and recovery. In this skewed little corner of the world, out of the hospital doesn’t mean all better, it means the immediate risk/benefit of being inpatient tipped to the risk side, because nowhere harbors more antibiotic resistant bacteria than hospitals, so hey, congrats! Now you get to go home and do all this without a kitchen sending the patient three hot, fresh, reasonably nutritious meals a day, no nurses, no wonderful cart down the hall stocked with warm blankets and clean linens, and oh yeah, no teams of doctors coming to round, so multiple doctor appointments across the city weekly. What’s the fourth thing? I have the best kids in the universe, no shit.

I don’t know if any of my old faithful readers still check Mrs Fringe. If so, thank you (and hey, I’m not dead!). If not, that’s ok too. Maybe some new readers will find me. Mostly I’m hoping to blog my way back to the status of human, if that’s still possible.

PS: My camera has permanently decided it no longer wants to partner with my laptop, so for the foreseeable future all photos will be blurry cell pics.

Practical Dreaming?

Perfection

The only thing better than a beach day is a beer on the beach day. Sadly, this photo is from last month, and I’ve only made it the beach a couple of times this year. Life.

A couple of weeks ago was the Mrs Fringe blog-o-versary. I celebrated in Fringie style by intending to post about running this blog for the past six years, but was distracted by life and there went that.

Here’s the thing about living with chronic bouts of medical mayhem. It doesn’t take much, doesn’t take long to have all the doctor, specialist, emergency room visits meld into one long this-is-the-entirety of life. And it isn’t knowing too much about what’s being said in medical-ese, it’s the sneaky tidbit that comes from behind you and smashes you upside the head with an anvil. Like knowing exactly which bathroom is likely to be the emptiest/cleanest at any given time of day at your most visited ER.

I was joking with one of my writing friends last week, and told her to send me a rejection email so I could feel like a person. She didn’t, but the writing gods were with me and I did get one from an agent a few days later. Sounds a bit crazy to say that, eh? Not just because rejection, but because querying, in and of itself, can often feel dehumanizing. But rejections can be ok, they’re a reminder of person-hood and productivity. And this was a lovely one, personalized, complimentary, and brief. Well, maybe it is a bit crazy to talk about good rejections, but it’s a crazy business.

In addition to commentary on all the political muck, there’s been a lot of industry muck going around recently on social media, stories of agents who aren’t ethical, etc. I follow, pay attention, but don’t say much because I have no personal experience; I’m unagented and have never been strung along by a shmagent. I’d like to say the latter is the result of my sophisticated New Yorker radar, but that would be nonsense. It’s luck. I’m no different than any other wannabe who plays with words, knowing exactly how slim the odds are, and yet investing hours and days and weeks and months, sometimes years, into creating fictional people and living in their worlds, because it could happen. I could get signed, one of my manuscripts could get picked up. I want to think I wouldn’t get suckered, but I can see exactly how and why that damned hope could override any warning signs.

Yesterday there was an interesting thread on the writer’s forum, it’s been discussed many times before, and I don’t think what it became was the original question/intent, but it was a plot vs writing thread. Which is more important to readers, likelihood of being picked up, that kind of thing. Yah, yah, the best novels have both, but most novels aren’t *the best,* and have one or two strengths, not perfection. I enjoy a broad variety of books, literary and genre (nonfiction, too), but if I had to pick one, I lean towards the literary. I can forgive/ignore a lot of plot holes for an interesting character. As a reader, that’s fine, there are always many fine novels to choose from.

As someone who plays with words with an eye towards publication, it couldn’t be a poorer choice. If I was smart–practical–someone who wanted to improve the odds of their dream becoming real, I would work on a tightly plotted thriller with an intern who saves cyberspace, or an epic dark fantasy with a fairy who saves the world, or beautiful, eternally young vampires giving fangtastic blowjobs to shapeshifters–while saving the world.

I’m not that smart. The New Thing I talked about in my last post? I’m still working on it. Took a week off because of the medical mayhem, got back to it the other day. I’m not a fast writer, but if I’m in it, I’m in it, and will average 1000 words every writing session. I’m all in with this angry, unlikeable and unapologetic older woman. This morning I woke intending to open the file and begin the next scene, but instead sat and thought about how thoroughly impractical this story is if I care about finding an agent. And/or being published. There went the day’s words, eaten by angst and shoulda woulda couldas.

There is such a thing as a practical dreamer. I wish it was me, but it isn’t. I I love this story–even though most of it is barely more than a shadow at this point, and I am having too much fun with this character. When my words aren’t lost to practicality and medical mayhem.

What the hell, might as well go all in on the angst:

New (ab)Normal

I probably shouldn’t blog when I’m pissed. I definitely shouldn’t blog with a large alcoholic drink at my side. I’m about to do both. Sorry, but I couldn’t edit my thoughts enough to limit to tweets. I am appalled and disgusted by how many people don’t want to understand just how deep a pile of shit this country is in right now, how deep it’s been since November 8, 2016. No, I’m not talking about 45 supporters, I’m talking democrats, those who consider themselves part of the resistance. Yes, they’re upset. Yes, they’re marching, they’re calling their representatives, they’re gasping at the thought of a hardline rightwing (and likely unqualified, given the other picks from this administration) Republican taking Justice Kennedy’s spot on the Supreme Court…and then they’re saying, well, midterm elections are only four months away. Well, at least we’re in a blue state.

Well, wake up, buttercup, all bets are off. Everyone knows by now this administration chose to separate and cage babies taken from their parents, who came to our borders because they were desperate, seeking refugee status in a nation that was, until recently, a reasonable shot at a reasonably safe life. Now we’re hearing about children as young as 3 years old in immigration court without their parents. 3. In court. Because if they deserve to live here, they’ll pull themselves up by their diaper tabs and orate like Atticus Finch? Stop for a second and think about how completely insane and evil that is. Now tell me how certain you are that living in a blue state, in a country that isn’t red, but black and blue, will keep you safe. If this government can decide to deny due process to refugees, they can decide to deny it to you.

Years ago I entered the world of being a medical needs parent. Not when kiddo was born, but a few years later. That’s when I learned, really learned, the idea of a new normal. Because at first, it’s natural, understandable, and probably healthy, to wait for and expect things to go back to normal. Surprise! That day doesn’t come. And you learn about the concept of new normal. And you think you will adjust. And then another medication fails, and another diagnosis is added, and then another diagnosis is questioned, expectations are adjusted, lather, rinse, repeat, ad infinitum. And then you reach a point where you understand new normal means constantly shifting. Along the way, you understand a lot of the old normal still applies. You still have to do laundry, make dinner, grocery shop, clean the toilet. Now you add more time in the pharmacy than you dreamed possible. Making sure all electronics are charged and ready to go at a moment’s notice becomes second nature. When things are bad, you make sure there are frozen dinners in the fridge in case of emergency, make sure there are always enough clean clothes in case that potential trip to the hospital has to happen right. now. You learn to be patient. You learn to wait-and-see without turning away. You learn how to argue, plead your case, and spend eleventy billion hours on the phone fighting with the health insurance company. Politely. And you learn polite doesn’t mean saying thank you and accepting when needed coverage is denied. You still get to laugh, enjoy good moments as they come along, treasure the people and friendships you make in this new abnormal world, and appreciate those friends from your old world who understand they cannot understand your new normal-abnormal, and hang in there anyway despite canceled plans because of illness, side effects, hospitalizations.

You know what you don’t get to do? Pretend that all this new abnormal is all going to disappear. Not only disappear, but leave no permanent scars on all involved. You don’t get to pretend that a momentary meltdown equals problem solved, or now you can ignore all the unpleasantness for the next month, or week. You don’t get to pretend, regardless of what gets worse or what gets better, that all involved aren’t irrevocably changed, shaped by these experiences, permanently on guard. You don’t get to pretend because this time it isn’t your kid hooked up to a gazillion tubes that the other kid who is there is purely theoretical. That is someone’s child. Maybe someone you know and care about, maybe not, but you know how easily that could be your child. As easily as the little one in a cage, in a strange country, climbing on a table in front of a judge when they’re too young to understand what a judge is, that child could be your child, whether you want to admit it or not.

America is sick. This is a chronic illness, that may or may not be fatal. We don’t get to pretend this illness isn’t insidious and progressive. Not even if neither you or none of those you care about have pre-existing conditions, or brown skin, or faith that isn’t Christian, or a uterus. None of us. It doesn’t matter if you’re appalled or offended. This is where we are, and we can’t possibly slow this descent into rotten banana republic if we’re still pretending the banana is just a little soft.

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.