Monday, October 20, 2014

Should We Have the Right to Die?

Where do our personal freedoms begin and end? In this country, we pride ourselves on having many rights, but do we have the right to end our lives?

The answer isn't as simple as you might think.

Brittany Maynard has reopened this topic for discussion. She has urged people to start having the tough conversations about what their wishes for the ends of their lives might someday be. She had shined a light on the realities that those facing terminal diseases deal with, particularly those who aren't willing to wait out the process without interference.

Brittany Maynard, a 29 year old, has brought this issue to the forefront because she's made the decision not just to end her life, but to open up her reasons for doing so publicly. She was diagnosed with glioblastoma, a terminal brain cancer earlier this year and given a short period of time to live. She moved, along with her husband, to Oregon, one of the only five states that allows a patient some degree of control over their own death in situations like hers.

She decided to come forward publicly with her plans when she realized that most people in a position like hers do not have the ability to end their lives with dignity. As soon as her story began to circulate through the media, it seemed that everyone felt compelled to comment on her situation.

Some understood her choices, some thought she'd given up, some urged her to seek alternative treatments. Some told her she was making a mistake, some urged her to turn to faith, some wanted her to get another opinion. Some just said she was depressed.

As the famous line in The Fault in Our Stars says, "Depression isn't a side effect of cancer. It's a side effect of dying. 

What Brittany hoped and hasn't happened, at least not that I have seen, is a widescale conversation about the right to die generally. People have focused on the specifics of her situation alone, missing the larger point.

She wanted to open a larger dialogue, not have people all over the world tell her that she's wrong.

She didn't ask for public input, she didn't post a poll about who supported her and who didn't. She opened herself up to criticism and commentary voluntarily, but it never ceases to amaze me how much people will try and insert themselves into the choices of other people when clearly it is none of their business.

There were even open letters to Brittany posted all over the internet from people trying to advocate whatever their position was.

Her choices are hers, this journey is hers alone. None of us know what it is like to be her, having to deal with the diagnosis she faces. I've been told that the particular tumor she has results in a great deal of pain, along with other horrible side effects, before it finally takes the life of the person suffering from it.

I honor her choice to end her life in the manner she sees fit, at a time when she deems it to be appropriate.

Then again, my own grandfather was a member of the Hemlock Society long ago, and I was raised to advocate forcefully for the right of individuals to make these choices.

Already planning to write about this, I came across a story last night on CBS highlighting another aspect of the issue. A story about a woman named Barbara Mancini, her father Joe and the end of his life, an ending which law enforcement authorities deemed criminal. Barbara was investigated in the death of her father because he asked her to hand him the bottle of morphine he had been prescribed and she gave it to him. 

Joe was ill with a laundry list of conditions, and he was tired of it all. After taking more of the morphine than he was prescribed, he sat with his daughter and talked. A hospice nurse visited later that day, and Barbara told the nurse that he had asked for the bottle, which she had handed him, then he had drank some.

The nurse contacted the authorities. Joe was taken to the hospital against his wishes where he lived four days with interventions before finally dying. He attempted to remove the wires at least once in those days.

He didn't want to die in the hospital.

Barbara was arrested. Over a year later, the charges against her were dismissed, but the case took its toll on her financially and emotionally.

Her father didn't tell her that he intended to kill himself prior to her giving him the morphine. They both knew that he was dying anyway. Her crime, aside from being a compassionate daughter who just wanted to spend those last hours talking to her father, was that she didn't call 911 and tell them that he had overdosed.


The five states that allow death with dignity require the involvement of clear wishes that have been discussed with a physician. They all vary slightly in effect, but none of them permits the involvement of a third party in the manner of death. The patient must be able to end their own life without assistance and must find a physician willing to prescribe the medications to be used.

Any involvement by friends or family can be cause for arrest as it was for Barbara Mancini.

In this country, we champion HIPAA. We talk endlessly about patient rights and autonomy. We want to believe, in fact most people probably believe, that we have the ability to make our own decisions about health care treatment in this country.

Spend any length of time in a hospital and really pay attention to what is happening around you, and you'll quickly realize that isn't the case.

Even when individuals write out their wishes ahead of time, even when they choose an agent to make those decisions on their behalf in the event they are unable, there is no legal requirement that health care professionals must adhere to those wishes. Without proof of the documentation, those wishes mean nothing. Even with all the necessary paperwork, those wishes can be (and frequently are) overridden, erring on the side of treatment in a patient who would otherwise refuse consent.

I've seen it play out personally, where a patient that doesn't want interventions is connected to every machine known to man to keep them alive. Lives prolonged when there is no chance of recovery.

When my own father was on hospice, we knew that him signing the DNR wasn't good enough. He had to avoid going to the hospital for any reason if he wanted his wishes adhered to. There was no way that we could call 911 for any reason if he wanted to be home at the end. We knew that.

Many people don't understand that. I can't even tell you how many families I have known that experienced something awful at the end of a loved one's life. The process of death isn't always linear and can be disconcerting to those unfamiliar with the process. There tends to be a period of irritability that prompts some to call 911. Sometimes a family member is in denial and calls. Sometimes they don't want to honor the wishes of the patient and want heroic measures taken. Sometimes pain isn't being managed correctly.

Regardless of the reason someone dials 911, once that call is made, there is a chance the wishes of the patient aren't going to matter all that much anymore.

We don't talk about death in this country because it makes us uncomfortable. We'd rather have unyielding faith in medicine, in the idea that everyone can be fixed and cured and saved.

Death is part of life, and if we don't talk about it, people we love, maybe even us ourselves, are going to die in a hospital connected to machines regardless of what we want.

Those facing a terminal diagnosis are in a place that those of us who haven't been can't possible understand. We are not in any position to judge their choices, to tell them that they are wrong, to urge them to keep living simply because we want that.

Life isn't just about the number of days someone lives.

It's about the quality of those days.

When someone decides the scale has tipped, who are we to say they are wrong?

Most who argue against death with dignity do so for religious reasons. The inherent flaw in those arguments is that not everyone has the same faith system. What one believes isn't necessarily what another believes. Our laws are not based in religion, certainly not in any one faith. Whether a religion condemns suicide or not shouldn't be a factor in the creation of laws. While we all have the right to our beliefs, none of us has the right to impose our beliefs on someone else.

The states that permit death with dignity have processes in place to ensure that patients are indeed terminal. They all have some level of psychiatric examination involved to ensure that the patient isn't just depressed. They all require that the patient communicates their wishes clearly to the medical professional.

Five states get it. The people living in the other 45 need to push for these laws as well. We need to talk about death, we need to accept that it is the only thing certain in life for us all. We need to understand the futility of treatment at the end of life, and how much our society is burdened with the cost of providing care to people who are never getting better. We need to honor the wishes of those who are done and allow them the means to go if that is what they choose.

We believe in the humane treatment of animals without question, but for some reason we stubbornly insist that life in any capacity is the goal for humans.

Watch someone dying, watch someone suffer. You just might change your mind.

Life is beautiful, death can be too.

I wish Brittany, her husband, her family and her friends peace and strength on this last part of her journey. 

Friday, October 17, 2014

On This Side

When I walked into the orthodontist's office for an unscheduled appointment with my oldest son yesterday, an older gentleman followed me in the door. He was alone and looked a little bit lost. The receptionist asked him if he needed help.

He told her that he was waiting for his daughter and grandchildren. The kids had a consult and he was there to help his daughter make the decisions about their treatment plans. He said something about being in the industry.

The lump in my throat had already formed.

She walked in a few moments later with her children. She was frazzled in a way all too familiar to me as the mother of children that age at nine in the morning. She seemed annoyed with her father when he asked questions. Were the xrays really necessary, he wondered? That was a lot of radiation that might not be needed if there were films from the dentist available. He cautioned her about making decisions about treatment, particularly if the recommendations were aggressive ones.

I understand where the annoyance comes in, really I do. I know how frustrating it is to have a parent hovering over you, questioning every single choice you make about parenting.

And yet, there was a huge part of me that wanted to sit down beside her, this frazzled mother and frustrated daughter. I wanted to hold her hand and look into her eyes and tell her to be grateful that she has this moment. To be grateful not just that her father is still here, but that he cares enough to show up at an orthodontist's office at nine in the morning. To be grateful that her son and he had such an effortless banter about them, one that hurt me to watch because it is something that my own children will never have with my father. I wanted to tell her that I was so grateful for the wisdom my father shared with me when it came to these decisions about the kids and their teeth, and that even though he's been gone over three years now, his words are still guiding my choices.

I wanted to.

I didn't, of course.

I didn't because I know why I feel this way and I know why she felt the way it seemed she felt.


I know that the longing in my heart to be frustrated and annoyed with my parents exists only because I am on this side of it all now, in this life without either of them. What I wouldn't give to just share a waiting room with my father again, to see the sparkle in his eye when his grandkids walked into the room just one more time.

That was all yesterday.

Today, even harder. A year ago, my mother took her last breath, far away from all of us.

I don't write about how she died. I don't write about why she died. I don't write about why she was there and I wasn't. I don't write about the things that happened. I don't write about how I found out she was gone.

Maybe someday I will tell those stories. Maybe, but I know that I am no closer to being ready to tell them now than I was 365 days ago.

There is a part of me, a growing part of me, that longs for resolution. Not with her because it is an impossibility, but with the others left behind. The family that I haven't spoken to since then. I want to pick up the phone, and there are times that I have even started scrolling through my contacts in a half hearted attempt to dial a number. I want to, but I pause every time.

I pause because I know they won't answer.

The damage done is too great, and I was the fall guy.

The funny thing is that I understand. I get it. I know why they all needed to blame me, and I don't blame them for the way they feel. They certainly feel justified. The part they never understood is that there was another side to it all. Mine.

I didn't matter then, and I don't matter now. And I understand. It just hurts.

I didn't just lose her, I lost them.

Without paying attention to the date, I scheduled an appointment for the baby to have an ultrasound of his hips today. At the hospital. They hospital that she spent so much time at while she was here. The one where so much changed. The one that they wheeled her out of and into a helicopter when it threatened again. The one she went to time and again.

Oh, the things those halls have seen.

It was about the last place I should have been today.

Or maybe it was exactly where I needed to be.

Who knows. I've given up trying to figure it out anymore.

All I do know is that my mother and I, we had our share of problems. There were things about her that I am relieved that I never have to deal with again. There are other pieces of who she was that I miss every single day.

A few weeks ago, I came across the memorial piece the Robert Downey Jr. had written about his mother upon her death. I didn't have occasion to write anything for my mother because there were never any services. Even if there had been, I likely wouldn't have been given that opportunity.

What I did write here made me a marked woman for a while. So I stopped.

His words resonated so deeply with me, they were so simple and yet so profound. Although his experience with his mother was necessarily different than mine, the circumstances of her life and death and the circumstances of his were dissimilar to mine and hers, it was all so deeply relevant.

She had much in common with my mother.

I've told you all for years that RDJ is basically my spirit animal.

Here is a portion of what he wrote. You can read the entire post on his Facebook page here. 

Her doctors basically titled her a "Medical Incredible," said there was little they could do, and were frankly amazed she was up and walking....

Many fond memories of her in the last few years...holidays, kid-stuff, her strutting around with a walking stick. I knew it was difficult, and understood as the visits got shorter.

In March, she suffered another cardiac arrest and was put on life support.

Her wishes were to be left to die if there wasn't a reasonable chance of recovery, which for some time there was.

I returned from filming the "Avengers" sequel in June, went straight to see her.

To my amazement, she was completely lucid, interactive, mugging + pulling faces.

We couldn't speak 'cause she had a tracheal tube. I wondered if she might just beat the odds once more.

Another set of seizures answered that, and we brought her home for hospice.

She died @ 11 p.m., September 22nd, survived by her extremely loving and tolerant partner of 37 years, Jonas Kerr.

She was my role model as an actor, and as a woman who got sober and stayed that way.

She was also reclusive, self-deprecating, a stoic Scotch-German rural Pennsylvanian, a ball buster, stubborn, and happy to hold a grudge.

My ambition, tenacity, loyalty, "moods," grandiosity, occasional passive aggression, and my faith....

That's all her...and I wouldn't have it any other way.

If anyone out there has a mother, and she's not perfect, please call her and say you love her anyway...

Elsie Ann Downey. 1934-2014



My mother wasn't perfect. I loved her anyway.

If you have a mother and she's not perfect, please call her. There will come a time when you won't have the chance anymore.



Being on this side is hard.

I miss you, Mom. 

I love you.

Thursday, October 16, 2014

In Defense of Dads

This post right here...it's something that I have been thinking about writing for a long time. I've put it off for a few reasons, not the least of which is the fact that it will almost certainly generate some controversy. I'm sure that I will get yelled at for what I am going to write, I am sure that there are people who will tell me that I am wrong. I'm even more certain that there are people out there who will use their particular situations to try and generalize about all men, all fathers, and so on.

I'm going to do it anyway because I am sick and tired of not saying anything.

You guys know that I don't do meek and quiet well.

So, here we are.

Defending Dads.

Not that they actually need my defense, incidentally.

There is this thing in society where men are bashed almost as routine, where fathers are belittled by television, by movies, and most frequently, by commercials.

I mean, seriously....commercials are almost always insulting to fathers. They are trying to sell whatever their product is, and they're trying to pander to a mostly female audience because they know that women do most of the grocery shopping. Apparently, they think that if they make men seem like bumbling idiots when it comes to all things parental that we'll somehow feel more motivated to buy their widgets.

I don't understand it.

Honestly.

Are there guys out there who don't have a vested interest in parenting? Sure.

There are women like that too.

Are there men out there who are totally clueless about how to raise a child/mop a floor/make a sandwich/change a diaper? Absolutely.

There are women like that too.

Are there men who bail on their responsibilities, who leave, who run away from being a grown up, who refuse to step up and be the parent they need to be? Of course.

There are women who do the same thing.

It's socially acceptable to slam men as a whole in ways that we would never tolerate of women. There are blog post after blog post after blog post dedicated to making fun of fathers. Can you imagine the backlash if there was this level of finger pointing at mothers? If there were this many socially acceptable assumptions made about the ability of women to properly parent their children?

While this generation of men is, in general, far more involved in fatherhood than prior generations have been, they are also probably the most made fun of.

They are hands on parents now, they are involved from the earliest parts of pregnancy through the delivery. They baby wear, they are informed decision makers, they are room parents and stay at home fathers. They do a hell of a lot more than most of our fathers ever did, and they still can't catch a break.

Why?

I don't understand it honestly. I know men, many men, who are the primary parent. The one home almost all the time, the go-to parent, the one dealing with juggling all the kids and a job and making it all work somehow. I know fathers who have quit their jobs entirely to stay home. I know dads who permanently alter their work schedules to walk their kids to class and make sure they are home when the bell rings at the end of the day.

I know some amazing fathers.

Even still, they have to deal with the snide remarks, the jokes, the ribbing from others. These guys probably deal with it more than anyone else, because in addition to all the people who assume they aren't adequately prepared to actually parent, they have to deal with the people who harass them for actually being good fathers. The ones who question their choices to put their families before their careers, who tease them for staying home, who call them Mr. Mom or imply that they are somehow less of a man because they are an involved parent.

When we mock fathers, whether we are doing it for their perceived failings or for the things they are good at, we are doing a great disservice. The fathers of this generation are in a place of damned if you do, damned if you don't.

If you're not a good enough father, society is going to call you on it.
If you're too good of a father, society is going to make fun of you for it.

What the hell?

Fatherhood is important. It is something we should be encouraging, not mocking.

Let dads do their thing the way they do it.

Sure, they might parent differently than we do, but that's not necessarily a bad thing.

We should stop acting like it is. I know my husband is better at many aspects of parenting than I am.

We should stop making fun of them online.

We should stop complaining about what we think they do wrong.

We should stop acting like it's a miracle that they are capable.

We should start treating them as the equal parents they are.

We should be teaching our children that parenting is a partnership, not a competition.

And this?

This is sexy.


High fives to all the good fathers out there.

Wednesday, October 15, 2014

Body Image, Booty, Music and Missing the Point

I've seen more than a few articles in the last week declaring that 2014 is the year of the booty.

Which seems strange to me. I grew up in the 80s. I came of age during a time when Baby Got Back stood on its own merits without being relegated to a sampled line from a Nicki Minaj song.

Come on. You remember this album cover...of him
standing on these gigantic magnificent fake ass cheeks?
Incidentally, if you're referring to your man parts as an anaconda in a song, I'm just going to assume you're taking a bit of creative license. Perhaps stretching the truth. Ahem.

Anyhow, it seems silly to me that 2014 would be declared the year of the booty since clearly we've already enjoyed the year of the booty. Or years.

Whatever.

As always happens these days, though, once the declaration was made, the articles challenging said declaration were written too. For the most part, I agree with the response pieces because they point out the history and relevance of the booty in prior decades, and get into the whole issue of why anyone is going about declaring 2014 the year of the booty...which has to do with the fact that white girls are the ones singing about the size of their asses now, when before it wasn't the white girls.

The points are valid ones, truly.

The song that seems to have triggered the most conversation about this is All About That Bass by Meghan Trainor.

You know, this one. The one that you can't avoid on the radio no matter what you do.


Sorry, I don't love it. I'm not one for bubblegum pop as it is, and this song annoys me more than normal. I'll tell you why.

(Of course I'm going to tell you why...that's why we are here, right?)

It bugs me because this song, the one that is being held up as the body love anthem of the year of the booty, is just as destructive as all the other songs that objectify women.

Just because the women are the ones doing the objectifying doesn't make it better.

Just because the song celebrates the virtues of a curvy figure doesn't make it okay.

Here's the thing.

There are lines in the song that I take issue with, big time. Assumptions made about women and girls who are naturally thin. Assumptions made about any female human who has undergone plastic surgery, or just looks like she has.

Why is it okay to sing about "stick figure silicone Barbie dolls" or "skinny bitches"?

It's not.

It's not okay and it's just as degrading as anything slamming women for being overweight. Or thick. Or basic. Or whatever it is that they are being slammed for.

You can rant all you want about the overuse of photoshop and the damage it does to women.

You can celebrate the body you have without putting other people down.

What you can't do, though, is declare that a song that celebrates one group of women at the expense of another is about body love. It's just another song pitting women against each other, where one group of women is standing on the shoulders of another to make themselves feel better.

Why can't we, why can't women, just celebrate who we are without resorting to insulting others?

Sigh.

Also. The song seems to imply that she has value as a person because the boys like a little more booty to hold at night. Um. Meghan, your value isn't determined by how many men want to grab your ass. Please don't teach my daughters to think that way. Lord knows I'm working hard enough as it is to teach them otherwise.

A song like this isn't about empowerment nearly as much as we want it to be.

It's just another song talking about the size of a woman's ass as though that is all that matters.

Every inch of you IS perfect from the bottom to the top, regardless of what the woman beside you looks like, and regardless of what the boys like.

Now go ahead, and move along.

Tuesday, October 14, 2014

Things That Piss Me Off Tuesday - the leave that girl alone edition

I haven't written a good rant in a while now, and it's long overdue.

Of course, I haven't exactly had the energy to devote to being pissed off lately either. I haven't had the energy to devote to much if I am being honest.

You forget how little sleep you get, just like you forget how tiny babies are when they are born.

Parental amnesia.

It's a thing.

Anyway...off we go.


Being Residually Pissed
You guys know that I'm still residually pissed off about the whole c-section thing and that my being residually pissed off won't be going away any time soon. That's well established.

Right now, today, I'm more annoyed at the crooked scar on my abdomen. Seriously. How hard is it to make it straight? You can't take a person with high anxiety levels, with long standing body image issues, with a tendency towards OCD-like behaviors anyway and give them something permanently asymmetrical. Not cool, you guys. I'm also pissed at the fact that my elbow is just starting to heal from being rubbed raw back when I could hardly get in and out of the hospital bed without a huge production.

I made an appointment with my regular obgyn, the one that I didn't see during the pregnancy for insurance reasons. I'm just not going back to the other office. Nope. If I ever had to step foot in there again, I'd probably have an overwhelming urge to start throwing things, and that's generally frowned upon.

Ebola 24/7
Do you ever feel compelled to take the entire news media and just shake them?!?!?!  I do. Like all the time. It's bad enough generally, but right now with the Ebola virus it has become so far beyond ridiculous and irresponsible.

They rush to hit the airwaves first with any information, regardless of whether it's factually accurate or not. They spout off opinions as though they are facts. They pass off misinformation as though it's something that can be relied upon.

This virus, it's something that we should all be aware of. Those exposed need to follow quarantine measures. Health care workers need to follow protocols. Screening needs to be happening.

Speculation about the disease, fear mongering in the press, irresponsible behavior by those who flipping know better (I'm so looking at you, Nancy Snyderman), none of that is going to make anything better.

Half truths, lies and assholery
It's election season, you guys. That means that all the air time on the television and radio has been bought and paid for by someone with a dog in the fight.

Someone who wants to manipulate you. Someone who doesn't seem to mind dropping millions of dollars to affect the outcome of an election with an expected turnout rate of about 3-4%.

These ads are full of lies. They are spun, they are misleading, they are overly generalized. They feed on your fears and insecurities and they do it because it works. 

Three weeks left. Tick tock.

Then it's back to commercials full of bathtubs pushing wiener pills.

Personally, I miss the wiener pills.

Leave her alone
Amanda Bynes is in the news again, and not for a good reason. I mean, it's not like she has been in the news for a good reason in a while now.

She's mentally unstable, that much should be painfully obvious...and yet she is the punchline of a million cruel jokes being told.

What the hell, world???

She needs help. Mental illness isn't funny. It is so far beyond frustrating to live with it, to love someone who is in such a bad place. The shittiest thing about mental illness that gets lost in all these conversations about how messed up her life is the fact that the hands of her friends and family are, for the most part, tied.

They can't really do much to help her because of how fucked up our system is.

We talk and talk and talk about patient rights and autonomy, which are hugely important and necessary. Most of the time. When you are dealing with a person who either can't or won't admit there is something wrong, who refuses to see that they need help...you can't do anything. Your hands are tied.

Unless they are enough of a physical threat to their own safety or that of someone else, enough to have them involuntarily committed for 72 whole hours, there's not a goddamn thing you can do. You can't make them see a doctor. You can't make them go to a therapist. You can't make them take meds. You can't do anything.

The idea of having the life of someone you love played out through the lens of a paparazzi's camera....awful.

Leave her alone.

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