medical mayhem

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.

Which Circle of Hell Are We in Now?

New Yorkers 1, Howard Kanovitz, 1965

Well, here we are (the fourth circle, greed?). By now everyone knows the House of Representatives passed their version of healthcare, the AHCA–Trumpcare. It was easy enough for them to do, because several of them didn’t bother to read it, they didn’t wait for details and projections from the Congressional Budget Office, and nor were the details made available to the public. What we do know is that this bill takes us backwards in human rights. In addition to other atrocities, it opens the door for individual states to allow insurers to charge more for people with pre-existing conditions. Of course this doesn’t mean every state will, but we know the insurance companies have a long history of putting profit over people, which makes them quite comfy-cozy with the current GOP.

As it stands, it cuts nearly a trillion dollars of Medicaid funding. This will harm millions. The opening of the door to increased costs for those with pre-existing conditions will harm millions more. One of the possibilities that has people like myself (yanno, those of us without dangly bits) in an uproar is what we’ve already seen in the not-too-distant past.  Pregnant? Might become pregnant? Well, sure you can buy health insurance, buuuut we’re going to jack up the rates to make you decide between health insurance and food. Had postpartum depression?  Sorry, we’re going to charge you more now.

And the cherry on top, sexual assault. Many, including myself, have been talking, tweeting, blogging about this. Sexual assault as a pre-existing condition, which could allow insurance companies to deny you or kicking you over to a high risk pool–as in, unaffordable.

Politifact rated this claim as mostly false.  They’re correct. I still call bullshit. It’s true, we don’t know exactly what’s in the bill. It’s true, the bill doesn’t define what is/isn’t a pre-existing condition, the insurance companies do.  However, again, as we know from the not-distant past, before the ACA (Obamacare), people in America who had been treated or even tested for sexually transmitted infections were later denied insurance, or kicked to the high-risk pools.  We know that domestic violence and sexual assault rates are high. We know these are already underreported. We know women are still not treated as equal and autonomous human beings. We know we have someone sitting in the White House who bragged about sexual assault, who rates women according to their mammary glands. We know it’s mostly men who are drafting these bills and making these decisions. That matters. That there isn’t a significant number of people of color, representing all of the many communities and populations that comprise America matters.

So yes, it’s technically correct to say the AHCA isn’t labeling sexual assault a pre-existing condition resulting in unaffordable premiums, but it’s paving the way for this to become the case. Let’s be real here for a second. We don’t want to be inflammatory, don’t want to induce panic when it isn’t necessary, and it isn’t ever productive. But to say it’s out and out untrue is a whitewash, a normalization of what is unnecessarily going to harm us all.

I know it’s a long way to go before this bill becomes law. It goes to the Senate now, and supposedly the Senate plans to write their own version. That doesn’t set me at ease. I’ve heard many say the Senate won’t allow the cuts to Medicaid, particularly Medicaid expansion under the ACA, that they won’t allow the rollback on protections for pre-existing conditions. I hope that’s true, but I remember hearing our current president would never win, he wouldn’t get the backing of the more moderate, traditional members of the GOP, that religious groups wouldn’t support him. I also remember a time when politicians, even Republican ones, talked about protecting the most vulnerable among us, not speaking publicly about the disabled and ill as if they are gum to be scraped off the bottom of their shoes. Hell, I even remember a time when elected members of Congress wouldn’t brazenly admit to not reading a bill they were voting on.

So if my words are inflammatory forgive me, because I’m pretty sure a match has been struck shockingly close to my ovaries.

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.

 

One of Those Days

Byron and Ramiro, by John Sonsini, 2008

Byron and Ramiro, by John Sonsini, 2008

Yesterday was just another one of those days.  You know the ones. Where you sit in kiddo’s specialologist’s office and they’re telling you news you don’t want to hear and their voice gets all tinny and small and you feel all tinny and small but part of your brain Must Keep Up Appearances so it engages your mouth and you try to sound like a Reasonable Adult Human Being by asking the right questions and taking notes as they tell you about two other specialologists that must now be added to The List of necessary ologists for said kiddo even though their words feel like a spray of pellets shooting holes in your tin self. Yeah, one of those days.

I haven’t actually read any news articles or watched any clips since leaving for the doctor yesterday.  This morning I scanned the headlines, and I didn’t miss much. Just another day with this administration, apparently gearing up to declare war on Iran, Mexico, China, and Australia (?!).  And, needless to say, continuing the war on the American People, specifically Democrats, women, people of color, Muslims, the wrong types of Christians, children, those who live in poverty, unions and union members, and anyone who mistakenly thinks Holocaust Remembrance Day and Black History Month aren’t about our Fearless Tweeter.  Did I miss anyone? I’m sure I did.

The other day I blogged about us, who “us” is, and the need to stop pretending that the supporters of our administration and these new policies aren’t part of us.  Indulge me today, while I talk about the GOP for the same reasons, just for a second. They aren’t going to save me, you, or anyone other than their own hides and bank accounts. Reasonable Republicans.  I believe that used to be a thing, much as I might have disagreed with them.  Now they don’t exist, not those in office, anyway.  Sure, a few make some noises here and there, statements mumbling disagreement, but ultimately, they’re staying right in line with our everything old is new again White Supremacist sanctioned policies.  Noises and mumbles don’t amount to more than a fart in a breeze when two of the horrific Cabinet picks were forced through despite the Democratic Senators’ boycott.  When there’s any one of them willing to support that horrific choice for Secretary of Education.  Thinkofthechildren my eye. When they ignore shady ties to Russia to clear Tillerson. When they support a well documented racist for Attorney General. When they quietly allow the firing of an acting Attorney General for putting the People and the Constitution above the administration. When they don’t say a word about the many active conflicts of interest. When suddenly Putin is someone to be admired, a role model. When legal and peaceful dissent and freedom of the press are overtly threatened.

What’s already occurred and occurring is horrific. I don’t have to read every word of every article every day to know this.  But I don’t get to ignore what’s going on in the country and world around me.  We may want to pretend we can just keep our heads down and it won’t effect us, but it does and will, in ways large and small.  Like imported goods being taxed so high we can’t afford fresh fruits and vegetables. Like losing healthcare. Like losing doctors to bans and deportations. Like losing research scientists for the same reasons. Like losing public schools. Like losing special education rights completely. Like more job losses because of hiring freezes, tech companies going to friendlier countries.  Like losing the right to practice whatever religion you choose. Or not. Like losing the right to vote because of increased gerrymandering. Like losing the right to choose, including situations of rape, the mother’s life at risk, and non-viable pregnancies.  Like losing the gains made in legalizing medical marijuana.  Like losing LGBTQ rights. Like losing all of our damned Allies in the world we share because they’ve been insulted and dismissed.  These are just a few of the very real, potential losses for all of us, without even looking at the more dramatic and yet suddenly also possible scenarios. The only question we have now is will this shitshow result in disaster or complete annihilation.

So, stop. Stop waiting for these imaginary ethical Republican senators and congresspeople to step up. I used to believe the next specialologist would have The Answer, maybe even The Solution, to my girl’s ever-increasing medical needs, but it became necessary to face reality and stop getting my hopes too high.  Still necessary to treat each issue as it arises, even necessary to hold a bit of hope in my back pocket, but for the sake of sanity and reasonable functioning, blind faith that everything will be ok and will go back to “normal” shortly is foolish.  As foolish as expecting the GOP to step up, or thinking our country hasn’t been fundamentally, irrevocably damaged.

Hush

Conflicted Slippers

Conflicted Slippers

I don’t think I ever owned a pair of slippers before, but this Christmas, I requested and received these.  Nice, right?  Damn, these are comfy, cozy, and all kinds of aaah.

With the country seemingly on the verge of implosion by capitalism-run-amok, and rising uncertainties about, well, everything, the little things are feeling very important.  Small kindnesses, small comforts.  And then, three days ago, even these ridiculous looking fluffs took on another meaning.  Trump, PEOTUS, tweeted a thanks to Linda Bean for what appears to be a questionable donation, and of course, telling everyone to support LL Bean. ’cause that’s totally what the President should be doing, right? Good grief, is there no respite from this bullshit–even in the privacy of my home, in my goddamned pajamas?  No, no there isn’t.

Which brings me to my point.  This week, as promised, the GOP took their first steps towards repealing the Affordable Care Act.  Oh yeah, they also began clearing the path for future cuts to Social Security, Medicare, and Medicaid.   Needless to say, I and many of my friends have been freaking out.  No, this wasn’t a surprise to any of us.  This is *exactly* what the GOP and Trump said they were going to do.  That doesn’t make it any less horrific, terrifying, and downright immoral.  And it isn’t just us, this “small”  percentage (14%, last I saw) of families who have a child with medical needs.  It’s everyone who has a preexisting condition, might ever develop cancer or other catastrophic illness, might have a serious accident, use birth control, or, yanno, would like to be able (legally and financially) to make decisions for our health–even if we’re women.

It’s true, I’ve seen a few posts and comments here and there from people who voted for Trump who are surprised and unhappy.  Why yes, the ACA is the actual name for Obamacare, so you just voted to cut your own healthcare.  You’d have known this if you read full articles and didn’t rely on memes and rally soundbites as the sole source of your information.  Why yes, the Medicaid you were able to get because of Medicaid Expansion, part of the ACA.  Why yes, your young adult child is able to stay on your health insurance until the age of 26 because of the ACA.  Why yes, you were suddenly able to get health insurance you could afford despite preexisting conditions because of the ACA.  Why yes, you/your child will continue to be insured and receive life-saving treatments that can carry a sticker price of hundreds of thousands of dollars per year because of the ACA–because yes, with the old “lifetime caps,” there were many who exhausted their lifetime benefits within 5-10 years of treatment.  I would like a law that says people who voted for Trump and GOP lawmakers cannot identify as pro-life, they must identify as pro-birth, because they’re happy to watch all those babies die after they’re born.

Oh, I’m sorry, did you believe Trump and the GOP when they said they’d keep the parts you liked?  I can only quote our PEOTUS, “Lies.” That shit was magical thinking, not a binding pledge. But many comments I’ve seen and heard from those on the opposite side of the political spectrum aren’t expressing surprise or outrage.  Quite the opposite, they’re still celebrating, “the swamp is being drained.”  Yes, and as it’s drained it’s being refilled with the raw sewage of unprecedented conflicts of interest, overt greed, racism, misogyny, homophobia, xenophobia, possible treason, and plain old hatred of the less fortunate.

Most of the comments I’ve seen and heard are the ones that prompted this post.  They’re the ones that say, “relax.  Being upset doesn’t help. Wait and see, nothing has happened yet.”  Oddly enough these are the comments I’ve heard the most because I’m hearing them from both sides. It’s true, being upset doesn’t actually solve anything.  Very logical, thank you, Spock.  Guess what? Neither does burying your head in the sand.  I’m no political pundit, but I’m pretty sure that philosophy/methodology is what got us here.  You know what else?  As the parent of a child with medical needs, the wife of someone with preexisting conditions, I don’t get to step away from this or wait and see, because those medical needs are every. fucking. day. and things are indeed happening.

The ACA is certainly not perfect, and there are people who have been faced with premiums that are unsustainable long term.  Seems to me logic would say fix it, don’t set that shit on fire. Our social contract is rapidly becoming a social disease.

Raise The Stakes

img_8991

When you write fiction, once you get past the technical/grammar/POV aspects, there aren’t a whole lot of rules. Guidelines, but those are flexible, boiling down to if you write well enough, if the story is riveting, you can “get away with” practically anything.  There’s one bit of wisdom that I believe is a rule: raise the stakes. What’s the worst thing that could happen to your protagonist, the biggest muck they could make of the situation in front of them? Make that happen.

I remember, about a thousand years ago, the catchphrase in the pop psychology/self-help section of the bookstore was, “we write our own scripts.”  Positive, empowering, offering the idea that we control what happens in our individual worlds. Imagine it for a second, with a laptop, a 99 cent Bic, or a pencil found in a goodie bag, we control it all.

Except we don’t.  Sure we control how we respond to events in our lives, and many situations are the result of choices we make, but sometimes not. Some of these situations are the result of other people’s choices–say, being faced with terror of potential loss of health care and special ed services for a medical needs kiddo because other voters decided tax cuts and a pro life stance were more important than social services, social justice, and the needs of children and adults who’ve already been born.

The holiday season is always a bit tricky for those who deal with chronic medical needs.  Those yucky viruses that are a nuisance for all can get complicated, more serious, and last longer than they do for the average healthy person.  We’re quite used to medical mayhem here in Fringeland.  It always sucks, but you do get used to the reality of a shifting normal, not necessarily expecting but being prepared for potential complications and unpleasant surprises. Or so you think.  Because sometimes you go to Dr Pediatrician who sends you to Dr Specialologist who sends you back to Dr Pediatrician who sends you immediately to another Dr Specialologist who sees and diagnoses something completely unexpected, that may or may not have an underlying cause, but regardless, threatens the vision of kiddo. The vision. Both eyes. Of kiddo whose all-things-good come from the visual.

Yeah, sometimes shit just happens, and it feels like some sadistic fucking wizard behind the curtain is writing a manuscript where you and yours are featured, and (s)he’s snickering at they keyboard because they figured out how to raise. the. stakes. for the next few chapters. If I were writing this manuscript, this novel (remember–by definition, a novel is fiction) and wanted to raise the stakes for an already challenged artist? No hesitation, I’d threaten vision. If I actually could control this, could write my own script? Absolutely, I’d get my butt back in the chair, at the keyboard, and write for twenty-two hours a day. But this isn’t a novel, and I sure as shit didn’t write this manuscript.

I may skip decorating the tree, and let the crying sap be my holiday statement.

It’s Personal, and It’s Us

img_8928

I should be doing my yoga right now, but I’m too busy crying.  I figure that demonstrates more than a modicum of restraint, because what I’d like to be doing is vomiting while I stamp my feet.  Donald Trump won.  Hate won. Fear won. Selfishness won. Greed won. Racism won.  Misogyny won. Homophobia won. Xenophobia won. Zealousness won. The motherfucking KKK won. The DNC won, in its refusal to acknowledge that no matter how qualified, no matter how many good reasons there were to support her, Hillary Clinton was not the candidate to run in a climate of fear and hatred.

You know who lost? Me and my loved ones.  No matter what platitudes are mouthed, this was and is personal.  November is Epilepsy Awareness month.  I usually post one blog post about it, and post several facts and awareness tidbits throughout the month on my personal Facebook feed.  I’ll stop now.  It doesn’t matter anymore.  Awareness doesn’t mean shit when the country just voted for my daughter to lose her healthcare in two and a half years, when she turns 18.  We can’t afford her meds out of pocket, let alone hospitalizations, testing, doctor visits.  I have friends who voted for this.  Were they unable to separate the facts of insurance premiums rising because of the greed of the insurance companies from the ACA? Prayers are lovely, and many believe they are powerful, but they don’t replace rescue meds when your kid is turning blue in front of you.  I don’t know, but don’t anyone dare tell me, my daughter, my Latino family, this wasn’t personal.

Maybe you’re lucky enough not to have to think about the ACA because no one in your family has preexisting conditions.  That’s wonderful for you, I’m not so lucky. Maybe you/your loved ones weren’t worried about the ACA because you/your loved ones have Medicaid.  How nice for you, I can only hope Medicaid and Medicare aren’t targeted right after the ACA, but I wouldn’t hold my breath.

Don’t tell me you have respect for women, believe in equal rights, when we’ve just supported a man who values women only for their secondary sex characteristics; when we just green lighted sexual assault.

Don’t tell me you care about education, when we supported a man who loves the poorly educated.

Don’t cry about your child being bullied, when we just voted into office the poster boy for bullies.

Don’t tell me you care about the differently abled, when we just elected a man who sees nothing wrong with mocking those who are different, and of course, the aforementioned gleeful plans to repeal the ACA.

Don’t tell me how this was a pushback against the elite, when Donald Trump personifies the elite.

Don’t tell me about hope for tomorrow, when we just chose the ignorance of the past.

Most of all, don’t talk about them.  It was the death grip of us vs them mentality that brought us here.  And no, I don’t mean only those who are afraid of people of color, or women, or the LGBTQ community. I include those who refused to see this as a real possibility and consequence, those who dug into “us” with unrelenting toothless trailer trash jokes.  America is a big country; when we talk about different lifestyles and acceptance that cannot just be code for left leaning ideals, it is real.

I saw a comment earlier, bemoaning this result, listing all the reasons it makes no sense and is frightening that Trump has been elected.  Included in that list? Melania Trump’s nudity.  Yeah, this is why we have all lost, and lost before the votes were tallied. Nudity? Not important.

This is us.  Greedy, fearful, easily distracted by a thin patina of gold and flashing lights.

I am in mourning.

 

 

 

Imaginary Friends

Mystery flower. I've got a whole container of these very real flowers, planted by an imaginary gardener.  Or the seeds dropped by the bluejay who comes to visit.

Mystery flower. I’ve got a whole container of these, planted by an imaginary gardener.

We all have those friends, who you meet and connect with, where within a short time you can’t imagine your life if you hadn’t met–but you know life would have been different; poorer, tea from a twice-used tea bag.  I have a garden of friends like those, a veritable field of wildflowers, though most of our shared tears, laughter, arguments, and wine have been cyber in nature.

I hate those memes that go around, the articles about clever art installations mocking our dependence on the internet and smartphones.  Do we miss the point, the moment, are we hiding behind our keyboards?  Maybe, sometimes.  But often we’re connecting, building new friendships and learning about points of view we wouldn’t otherwise see.  Those memes dismiss the relationships, the access to viewpoints and information that broaden our worlds.  They negate the very real support.

My first full online experience  was a forum where I met other parents dealing with the same issues as I was, asking the same questions, feeling the same fears and frustrations, laughing at the same gallows humor, sharing dreams, hopes, denial and acceptance.  Equally important were the adults I met in that forum who themselves had the disorder.  Also asking questions, sharing information, making jokes and living their lives.  If memory serves, before then my internet experience was limited to brief jaunts with Ask Jeeves.  Since then, I’ve been a member of several online communities with various special interests, and made some friends along the way in all of them.  But that first forum was special.  What a shock it was for me to discover not all forums were as wonderfully accepting and supportive, with statements carefully phrased so as not to be misconstrued and questions framed to help gather information, not attack.

Maybe the stars were aligned and the moon was in the seventh house, I don’t know.  What I do know is that we formed a tight, tight group that remains intact to this day, though none of us actually use that forum anymore.  We’ve supported each other through medical tests, diagnoses, hospitalizations, dance recitals, IEP meetings, divorces, jobs, life.  We’ve discussed fears of seizures being misinterpreted by overenthusiastic and undereducated police.  Many of us have been fortunate enough to meet a few face to face.  Imaginary friends who send real gifts, offer real advice, real laughter, provide an army of support to each other though various challenges.

Our children are ours.  Face to face or not, we’ve cheered successes and cried over setbacks, we’ve watched each other’s children grow.  Our online village.  Our community, not dissimilar to being a member of any minority group.  But not all of our children grow up.  Some have children that mature and leave home, some have children that will never be independent.   A few have children who have died, or will die.  Sometimes this is known well in advance, sometimes not.  We lost one of ours this weekend.  I’m not specifically close with this mom, she isn’t one of the women I formed a relationship with over and above our common bond, but her daughter was one of ours.

Imagine SIDS (Sudden Infant Death Syndrome, what used to be called crib death) being a risk forever.  Imagine a life where there is no age where the doctor says you don’t have to worry about that for your child anymore.  In our world that’s called SUDEP (Sudden Unexplained Death in Epilepsy).  Certainly not a common risk, but one that’s all too real.  I’m tempted to say it’s the fear and knowledge of SUDEP that brought our group so close together, but I don’t think so.  Many of us didn’t even know this existed until we were years into our common journey.

Imaginary friends?  Maybe, but much like the mysterious life in my planter, the flowers that have bloomed, flowers of laughter, love, tears, and mourning–are very real.

Rest in peace, sweet girl.