Friday, October 24, 2014

Voicemail Time Travel

Last week, I was chatting with a friend online about voicemail of all things. Sharing a date full of memories, her and I, we talked about how voicemail can hold reminders of the past. In our particular cases, we were talking about the messages left by those who aren't here any more.

For me, it was the outgoing message on my Dad's cell phone. 

I have to admit that I called it more than a few times in the first weeks and months after he passed. I just wanted to hear his voice again and I knew that once the service was disconnected, that message would be gone. 

There aren't many recordings of my father's voice. I have a few home movies that we took when our kids were young, but Dad wasn't really a talker. He was more of the sit on the couch in the corner and observe kind of guy. 

I come by that part of my personality honestly. 

These days, years after his death now, I have to go looking for his voice. Fortunately, I know exactly where to find it. 

He recorded some books for the kids. I know that he hated doing it at the time, that my Mom totally made him do it, but I am ever so grateful that he did. I keep them on a particular shelf in a particular cabinet and the kids all know that they are special books. 

Whenever one of them wants to listen/read those ones, hearing his voice stops me in my tracks. It's like he was just here all over again. 

We take pictures, us humans, believing that they are the best way to capture memories. Those of us who've lost the ones we love though, we know that pictures aren't the best medium to conserve those memories, just the easiest. Smell and sound, now that's where the good stuff is. 

I've smelled my Dad's scent exactly once since he died. I was in a grocery store a few months later when a man walked past me with the same combination of aerosol hair spray, Brut aftershave and Stetson cologne that he wore. Damn near brought me to my knees. I don't even know how long I was standing there, unmoved in the same spot, when this man passed by me. A store employee had come over to ask if I was okay, bringing me back to reality again. 

For that moment though, it was like my father was just here again. 

Pictures are good. 

Smells are better.

And voices. Oh, the voices.

It's funny that my friend and I were just talking about this issue so recently, though we were doing so in a reflective place of grief. It's funny because only a few days later, I had occasion to revisit the past again thanks to voicemail, albeit in a different way.

Earlier this week, on an afternoon that ended up not going according to plan, I was trying to get a hold of my older kids after school. They all have cell phones, so this shouldn't be so difficult, at least in theory. Of course that would require them to charge their phones, remember to turn them back on after the bell rings at the end of the day and actually answer them...a series of events that clearly is impossible to expect. 

Anyway, I had called each of them more than once, never reaching any of them. I called Mini-Me's phone again. Usually she is the most likely to answer. 

She still didn't answer and it went to voicemail. The outgoing message played and something registered in my head. 

She said her brother's name. 

Why would she say her brother's name?

It didn't make sense, so I called it back, this time out of curiosity about the message as much as out of the need to talk to her. 

The line rang and rang, then the voicemail picked up. I listened intently this time.

The message wasn't one she had recorded at all.

It was him, The Oldest. It was the message he had recorded years ago when that number was still his. It was his voice. His 10 year old, pre-pubescent voice. His tiny little boy voice.

I don't even really remember him sounding like that.

These days, his voice is low and booming. The squeaks lessen with each passing day as his transition from boy to young man progresses. He's over a foot taller than he was when he recorded that message. 

I have pictures of what he looked like, certainly. I can recall the subtle changes in his face as he's aged. 

His voice, though, I'd forgotten. 

When my husband came home from work, I told him he needed to hear something. He asked what. I told him just to listen as I dialed his youngest daughter's phone number and handed him my phone, the dial tone running in the earpiece. He was confused.

Then he heard it and the smile spread across his face, the smile that told me that he'd recognized whose voice that really was and what it really said. 

We can't keep our children young, we can't stop them from growing up, and we certainly can't go back in time, but sometimes moments like this one come along unexpectedly and remind us of who they used to be. Sometimes the past can be revisited just for a little while.

When she realized what was going on, Mini Me asked if she should change the outgoing message. 

Not yet, honey...not yet. Let me listen a few more times first.

Wednesday, October 22, 2014

The False Promises of Frozen Eggs

Last week, the news broke that Apple and Facebook are both offering a new benefit to female employees. Both companies will now cover up to $20,000 of the cost for women to extract and freeze their eggs as an elective procedure, a sizable financial commitment on their part.

It is easy to see that number and be impressed. It's easy to think that these companies are investing soundly in the individuals in their workforce, that they are making a huge leap forward here. It's easy to believe that they are doing this to benefit the women who work for them, for their futures, for the families they plan to someday create.

It's easy, but it's misleading.

The truth is that this policy of covering these procedures isn't really being extended for the benefit of the female employees nearly as much as it is being done for the benefit of the companies.

In encouraging women to delay motherhood, the companies are hoping to keep a solid workforce, one that isn't marked by women leaving either temporarily or permanently to have children. They want to keep their most productive employees in the building and are willing to pay a little extra this way to keep them there. This is not much different than the firms that entice workers with on-site gyms and other amenities.

"You have no reason to leave work!", the recruiters say with a subtle mischievous grin.

Wait. This is work. This isn't life.

You're supposed to leave work. 

These companies are banking on the idea that freezing eggs will be enough of a security blanket for the women climbing the workplace ladder. They are telling their female employees this: We value you, but we value you more if you choose to delay having a family. In fact, we value you without a family so much that we'll pay for you to not have children now.

Doesn't seem like such a generous benefit anymore, does it?

Egg freezing isn't a guarantee of future pregnancies. The idea that it exists as a guarantee is false, and feeds into this bizarre societal insistence that we should be in control of things that we can't control. The pregnancy success rate using frozen, unfertilized eggs isn't nearly as high as most people believe it to be. Current studies put that number at somewhere around 3 in 10, though those studies involve women using the process because of diagnosed infertility, not because of the election to delay motherhood.

The science of freezing eggs is something that developed only within the last few decades. Originally for women undergoing cancer treatments or who had some other compelling medical reason to extract and freeze eggs, the process is now looked at as just another way to put off parenthood, even though it was never intended for that use. ACOG and the American Society of Reproductive Medicine both discourage egg retrieval and freezing for elective reasons. 


Egg retrieval can be dangerous. They recommend against elective retrieval and freezing because it isn't a simple process. To extract eggs, a women must undergo a fairly involved process of hormone injections and procedures, all of which carry some health risks, not the least of which is the potential for fatal blood clots.

The hormones involved in extraction are administered in high dosages, which can lead to all kinds of side effects including emotional disturbances.

Who pays for the IVF down the line? The egg retrievals are covered, but what about ten or fifteen years from now when these female employees decide it is time to have a child? Assuming they need to tap into the frozen egg vault for whatever reason, that they cannot become pregnant without using those eggs, who is going to pay for the fertilization and implantation, for all the additional hormone regimens and procedures later on down the road to attempt to create successful pregnancies with these long-ago frozen eggs? None of that is cheap, and unless the companies are also willing to pay for the rest of the process down the road, what is the point other than to just give women hope that they can have it all - the wildly successful career now, the family later?
These companies are asking their female employees to put their trust in a medical process that isn't a guarantee, to delay motherhood in order to focus on their careers alone, and they are doing it for their own purposes. Rolling it out to seem like it is just for the benefit of the employees is misleading at best.

There are many who say that companies have done this for decades, and it's true. Women have had to face choices in their lives about this issue for a long time. Do they focus on their career, put off the family and hope for the best? Do they choose to start their families when they are younger, potentially derailing their careers? Do they attempt to have it all - the career and the family?

Some come to the defense of the companies in this respect because at least now they are providing women with a tangible option to help make that decision to delay childbearing for their career. Freezing eggs gives women a marginally better chance to be able to have children later on, this is true, but is this really being done for the benefit of those future families?

Even more important, what does it say about work/life issues for everyone?

If these companies really wanted to demonstrate their commitment to the choices of their employees when it comes to a work/life balance, perhaps they should be thinking about extending other benefits. They should be talking about the kind of benefits that could help employees in every position achieve a better work/life balance - whether they are male or female, parents or not.

- Paid maternity leaves. Most women save up time off, then tack on an unpaid FMLA leave for 6 weeks. Apple and Facebook both have generous leave policies as compared to national averages, but this is a larger issue that needs to be addressed.

- Add paid paternity leaves.

- Give employees more time off generally.

- Allow employees to take time off or work from home when their children are ill.

- In-house daycare.

- Flexible work schedules.

- Job sharing.

- Telecommuting.

- Salary equality among men and women in the same positions.

The way the world works these days, we are all connected 24/7 it seems, tethered to the internet with the phones and tablets we carry everywhere we go. Why then do we need to still feel confined by the traditional 8 hour work day, housed in an office when we do everything on a computer anyway?

Simple. We don't. These companies could acknowledge that truth, extend more flexibility to all their employees, and make a much more salient point about wanting their workers to have a good work/life balance.

Instead, what they have done here is the exact opposite. Under the guise of providing women options, they are instead dangling a carrot in front of the faces of women who are already being pressured to delay motherhood. Except that this carrot, as much as it looks perfect now is a carrot that they may never reach, a carrot that might be useless when they need it.

Telling women they can freeze their eggs and trick the clock is just another way to manipulate us into believing that we can have it all, that we can control every single aspect of our lives, that we can put our lives into tiny boxes, separate ourselves into decades of production, delay something that biology tells us we shouldn't.

As humans, we are kidding ourselves if we think we can fool time.

Now, some of us are just getting paid for it.

Tuesday, October 21, 2014

Things That Piss Me Off Tuesday - the sleep deprivation Ebola czar edition

Yawn. Hi.

It's after 3 p.m. and I just opened the computer for the first time, if that's any indication of how today is going so far.

I haven't been getting much sleep lately, not that I'd necessarily have expected that I should be at this point with a five week old. In the last week or so, though, it seems like he has developed reflux. And when I say it seems like he has developed reflux, what I really mean is that he's a barf machine. A cranky barf machine. He smells, I smell, all the clothes and sheets and blankets and burp cloths are getting barfed on.

If you happen to see us out in public somewhere and I resemble a zombie, appear covered in curdled milk...that's why.

Seriously though, I just hope that he's still gaining weight with the amount that he's not keeping down.

I'm not watching much news at this point, mostly because almost all of the news cycle seems to be dedicated to Ebola fear mongering, and that's not my thing. The schools closing and putting employees on leave are making me crazy. I saw an article today that a college is actually refusing admission to students from Nigeria over this whole thing.

In a lot of ways, this irrational fear isn't a whole lot different than in the early portion of the AIDS crisis. Except that back then, the President was in denial that the disease even existed, people assumed they couldn't get it if they weren't gay.

These days, the President isn't in denial at all. The whole situation hasn't been handled splendidly, but it's certainly not elevated to the level of full blown denial like Reagan did. There isn't enough funding for disease research, but that isn't a new problem and it isn't something Obama has anything to do with. We still don't have a Surgeon General, and this "crisis" hasn't lit a fire under the Senate's ass to get on with the confirmation hearings.

The reason Dr. Murthy hasn't been confirmed, and likely won't be any time soon, has nothing to do with Ebola or any disease for that matter. It has to do with the fact that he believes that guns and the deaths caused by guns in this country are a public health problem.

And he's right.

Over 30,000 people were killed by guns last year. 

Ebola has killed one person here in the United States so far.

So, let's just get this straight. Because this doctor believes that something directly involved in the deaths of thousands of people every year is a legitimate public health issue, he hasn't been confirmed, leaving a vacancy in the office. As a result, since we don't have a sitting Surgeon General, we've now invented the position of Ebola czar to deal with a "crisis" that thus far extends to three diagnosed cases.

The guy tagged, Ron Klain? Yeah, he doesn't have a health care background at all. 

Someone want to explain this to me?

Never mind.


I got this far before the baby decided I was done writing for the day. So, that's all I'm going to have time to be pissed off about today. What about you? What's pissing you off this week?

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.

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