The Right to Die

This is a follow-up to the previous post, Without a Sound:

There’s a lot that bothers me about the handling of the news about Brittany Maynard, the 29 year-old woman who chose to hasten the end of her life after she was diagnosed with Glioblastoma Multiforme (GBM).  Probably the thing that disturbs me the most is the confident way that so many people have commented on her story and her decisions, as if they have any idea what has really been going on behind closed doors in her life.

As someone who was there on the scene for most of the 75 days between my dad’s diagnosis of GBM and his death, I feel like I have a fairly good idea what was going on, but I also know as a result of my experience that there are some things – even in highly publicized cases like hers – that anyone on the fringe or further out cannot know, and that’s the way it should be.  Health issues are private and personal.  The fact of the matter is that even with as healthy as Brittany looked when her image appeared in the news just days before her death we don’t know what the cancer inside her brain was doing to her, and we don’t know the intricacies of her diagnosis or prognosis.

Another thing that disturbs me is the way the media has portrayed Brittany as a hero, as if she was a crusader of sorts because of a personal choice she made to make another personal choice public.  To me, it seem like this implies that a person who does not make the same choices that she made is not as important or as courageous.  I'm glad that Brittany and her family had the opportunity to make the choices that they made, but I also think that people in other situations need an equal amount of respect and compassion. And my bet is that she neither viewed herself as a hero nor wanted to be viewed as one; like the rest of us, she was probably just doing the best she could to get through life and the hand that she was dealt in life.

The tricky thing about commenting on such an emotionally charged topic is that logic often takes a back seat in such a situation, as does respect for the views of others. I have had a hard time figuring out exactly what I want to say about Brittany’s story because I see the irony in producing commentary about the error I think others are making by commenting about the case.  The potential for expressing bias as fact, judgment, condemnation, shaming, and labeling is huge; this is what we tend to resort to when threatened or frightened -- and there's not much, if anything, in life that's scarier than facing pain and the end of life. When I think about the many comments that have been made about how Brittany chose to handle her medical condition, most of which have seemed judgmental and harsh to me, I can't quite get past the hypocrisy of saying "Shame on you for shaming someone else" or the irony of judging someone for being judgmental.

Here’s a confession: when I read about Brittany’s success in doing some of the things on her Bucket List, I felt jealous and even a little angry.  My dad had a Bucket List too, but he wasn’t able to get to any of the items on his agenda because of what GBM took from him from the moment the condition revealed itself.  I also felt jealous that Brittany’s medical team seemed to have communicated with her clearly about her options … or maybe she was just more able to figure out what her options were because the cancer in her brain hadn’t impaired that cognitive skill in her … yet.

My dad’s doctors, especially his oncologist, didn’t seem to have an accurate view of what was happening when he went into a downward spiral.  It seems like an oncologist would be much better attuned to medical facts so as not to succumb to the attraction of denial, but that was not the situation in my dad’s case.

I honestly don’t know what my dad would have done had we had all of the facts, had he been able to adequately process things, and had he had an opportunity to make a choice that would not put his family in jeopardy in any way.  I know that it would have been nice to have someone – anyone – ask him, or us, about his priorities.  The medical team was evidently too rushed, too uneducated, or too something to think to ask him, and we didn’t know to ask (or what to ask or how to ask it) or to speak up on his behalf until the very end.

As I've said and written about, the diagnosis of brain cancer, especially GBM, is particularly devastating for many reasons.  As a result of the attention brought to GBM by Brittany’s case, NBC news wrote an article about the unique challenges with brain cancer:

Why Brain Cancer is So Lethal

The neuro-oncologist who called me to announce that my dad’s case had been accepted by Duke University is quoted in the article:  “Brain tumors,” he says, “particularly but not exclusively the malignant ones … are in such an eloquent area of the body that surgical intervention may not be possible and other interventions such as radiation therapy may come with a fierce price.”  Yet another thing I wish I wasn’t in a position to have to know truth of.

Recurrence of GBM, the article says, is inevitable, at least as the treatment options now stand.  As I wrote about in the last post, this is especially true in certain variations of GBM. 

Another thing that bothers me about the coverage of Brittany’s story is the overuse of the phrase “death with dignity.”  Maybe it’s just a weird point of sensitivity of mine, but I don’t like the fact that that phrase seems to imply that there is no dignity in making a different choice – or in not having a choice – about the specifics of an impending death.  That feels like a really sick kind of competitiveness: who did death better???  Even the phrase “the right to die” seems muddled to me: I’m pretty sure that dying is a natural process rooted in science, not a “right.”  I think better terminology is “to hasten the end of one’s life” or something similar that better captures the fact that one's time on this earth is not going to be long with a diagnosis like this, no matter how things are handled.

We can’t know what the specifics of Brittany’s medical condition were, and we can’t know what she thought or felt when the news of the prognosis and the path she would likely have to travel were delivered.  In an instant, though, her choices - and life as she knew it - were stripped away.  I think, like a lot of people with terminal diagnoses who consider “physician-assisted suicide,” that she was desperately trying to gain some control in a situation that was horribly out of control, and I get that.  If you’ve ever seen someone have a seizure, if you’ve ever seen the terror and confusion in the eyes of someone who is aware that their own mental state is impaired, or if you’ve ever seen the look of humiliation and angst on the face of an adult who has wet his pants because he couldn’t make it to the bathroom in time, then you might have a little bit of an idea of what she and her family were feeling.  If you love a person who is having to endure things like this, plus a significant amount of often unrelenting physical and emotional pain - and who is being told that death is imminent, then there’s a chance that maybe you can relate to what it’s like to feel such a desperate need to try to establish order and control. 

I wish I could say that I can’t imagine what it took for Brittany’s family to support her decision; I’ve tried thinking about what it must have been like on their last night with her or in the last hour they had together before what they knew was going to happen happened; it’s a different kind of horror, I would imagine, than what my dad and my family experienced – but, I would guess, the same kind of love.

 This is a song that my dad loved, played by a musician named

Bernard Stanley"Acker" Bilk who died earlier this week. 

The Art of Sportsmanship

One of the things I love about the Olympics is that through watching the Games, we occasionally get to see little glimpses of good sportsmanship that are unlike anything seen in mainstream sports.  Good sportsmanship, to me, comes from having a genuine love of one's sport and can only really be experienced when one has the right perspective; it's about being grateful for having the chance to compete, no matter what the outcome.  

I think perhaps everybody's favorite competitor based on sportsmanship this summer was South African Oscar Pistorius, who advanced to compete in the 400-meter finals despite having two prosthetic legs.  

Another example of an athlete who was a good sport in the face of competition was Sam Mikulak, the U.S. gymnast who was in third place in the men's vaulting event as he openly cheered on the competitors who performed after him and ultimately bumped him out of medal position.

But my favorite moment of sportsmanship was in the mens' 10,000 meter run during track and field; skip ahead to 2:40 on this video clip and you'll see Mo Farah, the British distance runner, cross the finish line first to take the gold, followed by his training buddy and my pick for Best Sport of the 2012 Games, Galen Rupp of the U.S.:

In my years of competitive running while I was growing up, my dad always encouraged me before every race to gut it out and to give it my all, to do the homework (and by that he meant to put in the miles and the training beforehand AND to learn whatever I could about both my competition and the course ahead of time), but to leave it all on the track.  He taught me that when the race was over, my competitors were my friends, that our mutual love of running made us allies in a sense.  Through advice that my dad gave me about running, I learned that how one behaves before, during, and after the event is every bit if not more important that who stands on the awards podium at the finish and that sometimes it's your day to have a good race and sometimes it's someone else's day.  That's how I came to value Sportmanship and all it embodies - respect, fairness, kindness, and honesty.  

Anger - Part Two

To read the first entry on Anger, click here.

I recently came across this quote by Maya Angelou:  “Bitterness is like cancer. It eats upon the host. But anger is like fire. It burns it all clean.”   That started me thinking about what the difference is between bitterness and anger.

The dictionary defines bitterness as a state of being angry, hurt, or resentful because of one’s bad experiences or a sense of unjust treatment, and anger is defined as a strong feeling of annoyance, displeasure, or hostility. 

Hmmm.  I’m not sure that helps me.

I think there definitely is a difference; it seems like it’s ok in society to be “angry” but not to be “bitter.”  Maybe they start out the same but end up differently:  anger can be expressed and, in theory, decreased or eliminated, and bitterness stays the same or gets even worse over time.  

I’m still not sure which one I am at this point.  Maybe both.  I want to say I’m not bitter about my dad’s illness and death; I’m not so self-absorbed as to be unaware that illness and death happen to someone (and someone’s loved ones) every minute of every day.  I get that our story is unique to us, but it’s not really unique.  I’m still mad, but I’m trying to get it out, to turn it into something productive if that’s at all possible, to look for a Silver Lining in all of this, to count my blessings in addition to feeling the burn of the anger.  Hopefully that puts me in good standing in the Anger vs. Bitterness contest (Have I mentioned that I’m a tad competitive?), because it’s really all I know how to do right now.

Someone asked me recently what it is that I’m so mad at, besides the obvious loss of my dad.  For me, it’s also the statements that people make, to me, to others, and in general, about cancer, death, and grief.  I don’t know why that infuriates me so much, but it sure as hell does. 

Someone I know recently posted a link on Facebook to an article about how people should take control of their destinies with healthier lifestyle choices.  The author even went so far as to imply that those who did would – you guessed it - avoid cancer.  Um, no.

I had to duct tape my hands together for a few hours to keep from typing a blistering response to the posting.  I realize that kind of stuff is meant to be helpful, I really do, but speaking like that author did and then seeing people give him credit for putting out info like that (Thanks, Captain Obvious!) pisses me off.  I want to yell, “You don’t know what you are talking about!”  It would seem like this would translate into me feeling protective or advisory towards people who say things that I now see as ignorant and uninformed:  “Be glad you don’t know that no one is safe!” but I don’t; I’m just mad.  Mad that I have to know that claims about how cancer can be avoided are ridiculous and that I have to know that there are no guarantees, even when we follow “the rules.”  

It also upsets me when people try to shut down grief, presumably because the emotions or memories or perspective of those that are grieving make them uncomfortable.  Sorry!

I spent lots of time running with my dad when I was a teenager, and he was always a better runner that I was.  Sometimes when I was lagging on a run, he would speed-walk beside me in step with my slow-jog pace.  Every time he did that, it made me mad.  I felt like he was taunting me and that he didn’t understand that I was just having an “off” day.  Most of the time, I responded by speeding up my pace, maybe in annoyance and maybe even to get to the end of the run faster so I could dodge him for awhile. 

I feel like something similar happens fairly often in the grief process for me these days, not with Dad of course but with lots of other people I know.  So what if I’m at a slow-jog pace in grieving?  I tell myself they can walk alongside me (or away from me!) if they so choose, but I cannot let myself speed up the pace in response to what they are doing, feeling, or thinking.

I hope that I can just go about my business, wading through my own grief, without that anger entering into any more relationships than it already has.  I need support, or, failing that, peace and time.  Like that expression we heard so much as kids, “If you can’t say something nice, don’t say anything at all,” except I want to substitute the word “supportive” for the word “nice.”  

I want to push through the Red Door of anger; I want to focus on feeling fortunate for what I had and what I have instead of what I have lost over the past year.  I want to find a way to, as we say in the South, make sense of this mess!

I hope that I can keep myself together, especially through the next few months when the one-year anniversary passes for Dad’s diagnosis, surgery, last birthday, last holiday season, and for the time when he went on ahead.

I hope the anger burns clean. I hope I don’t get stuck in this process. I hope I can keep my perspective and avoid bitterness.

Questions

Nope, this is not going to be about what you think it’s going to be about; I’m not going to bring up questions like how did a very healthy person get brain cancer, how did the “Magic Bullet” treatment not work at all, what happened that caused his rapid decline at the end, etc., right now.  This is about a different set of questions.

From the time Dad was admitted to the hospital on October 23, 2010, every time a medical professional entered the scene, he or she asked Dad a set of questions as part of a check on his neurological status.  Sometimes the questions were more detailed and complex, but the basic ones were always the same:

         *What’s your name?

         *What’s today’s date?

         *How old are you?

         *Where are we?

         And sometimes, a Bonus: How did you get here?

As I’ve mentioned, Competitiveness runs in our family.  For example, when my grandmother was mobile and somewhat alert in the nursing home where she spent the last few years of her life, she told us repeatedly (and on several occasions actually demonstrated for us) that she was the fastest person there on her walker and, later, in her wheelchair.

I don’t think Dad fully realized why these Questions were being asked of him on a regular basis, but, because of this Competitiveness, he did NOT want to answer any of them incorrectly.  

The first few times they were asked of him when he was awaiting surgery in the neuro-ICU, he threw out guesses for all except the first one. I’m sure he could see the shock and disappointment all-around when he didn’t get the majority of them right.  That plus the Competitiveness equaled Fierce Motivation: Dad started saying, “I’ve got to start getting those damn Questions right!”

And so, like any good nerd/competitive person would do, we started a Study Group.  “Quiz me!” Dad said, over and over, especially when he thought the nurse or doctor was about to come into his hospital room. 

I’m sure any of the medical people who suspected that quizzing or prompting might be going on thought it was because we were all in Denial that something was so wrong that Dad couldn’t correctly answer the Questions.  And maybe that was part of the reason, but, honestly, it was more the Competitiveness. 

And so I coached him, just like Dad had coached me in so many training sessions when I was running competitively in middle school and high school.  Sometimes his answers were correct but in a veiled way that required explanation from one of us who knew him so well and knew what he meant; for example, the first dozen times he was asked about his location, his answer involved something about working out or swimming, as in “I’m where I can swim laps in a great pool.” 

Admittedly, this seems like an answer that should have resulted in a Big Red “X” going into the chart, unless it was accompanied by the Assist:  The hospital was directly across the street from a very nice gym that was one of the places Dad went to train for the Ironman, including swimming in their Olympic-sized pool.  HE WAS CORRECT BY PROXY, and we wanted the record to reflect that. 

The other question for which he needed back-up when it was posed to him the day before his surgery was the Date Question.  He repeatedly said the date was “10-26-43,” which seems like material for another Big Red “X” until it’s put into context:  that was his date of birth; it was his birthday that day, and, instead of saying the month, day, and year that it actually was, he was substituting a rotely-learned year, one that he had written countless times over his 67 years.

He eventually got most of them right, at least when we provided the Assist, except for the Bonus Question, which he was never really clear on.  But then again, neither was anyone else, so let’s just say that one doesn’t count.

                                                

                             I heard Dad sing this song hundreds of time over the years.