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. 

Chapter One, Part 2: The Fabric of Our Lives

Not long after my youngest sister Nancy was born, my mom crocheted an afghan blanket that ended up being kept on the back of the couch in the den.  It was half decoration, half functional item, and it was part of the landscape of the various houses in which we lived over the course of the next twenty years or so.  The colors of the yarn in the blanket were those of popular décor back in the 1970’s, mostly different shades of browns.  Looking at the blanket, though, it was easy to spot the one color in the mix that really stood out, not because it took up the most space in the pattern but because it was the brightest, a brilliant shade of orange, like the tip of a flame in a campfire that has been burning for awhile. 

The orange in that blanket is like the sport of running has been in my family over the years, something that stood out amongst whatever else was happening at the time, a mainstay or maybe even a theme sorts.  Not everybody in my family is a runner, but everyone in the family knows about running and appreciates the talent and the dedication behind it, because of what we assimilated through my dad’s enthusiasm for it. 

My dad started running when he was in elementary school; he said that he liked to race the bus to his house after school.  In high school, he was a competitive middle-distance runner on his school’s track team, and he was awarded an athletic scholarship to Troy State (now Troy University) in Troy, Alabama, after graduation from high school.  He continued to excel as a runner through his tour in Vietnam, which started a year later, and then again as a college student on the GI Bill at Auburn University. 

After he graduated from college, my dad got a job with Cook Industries, a company for which he worked for the next ten years, a time during which the company required my dad and my family to move many times.  Through it all and in the decades that followed, my dad ran, for sport, for social reasons, and for health and fitness.  I heard him say many times that he loved to run because it made it feel better, because he got to meet all kinds of people and see all kinds of things through doing it, and because he liked to have a goal.  “Plus,” he almost always added with a smile, “That way I can drink a few beers without worrying about putting on weight!”

Dad called on me to join him as a runner when I was in the fourth grade.  I’d run laps around the track here and there while I was waiting for him to finish his workout a few times in the past as a young child, but it wasn’t until I was in late elementary school that he thought I was ready for an actual training program.  With the two of us in training, there were always smelly running clothes and shoes and endless bottles of Gatorade around the house.  As a family, our weekends began to center around road races in the area in which we ran; occasionally my sisters joined in the effort too with Mom backing us up as Head Cheerleader/Nurse/Logistics Manager. This continued throughout my middle school and high school years, and then, when I became more of a recreational runner during my college years, it extended to the running days of my sister Nancy, who was also competitive in cross-country and track during her time in high school. 

During this time, Dad was typically running in excess of 100 miles per week, often in training for a marathon or some other big race in which he was set to compete.  Sometimes we cheered him on from the sidelines as spectators, and sometimes we joined him in his running efforts, whether training for an event or running in a race, always with him running along with persistence and triumph etched into the expression his face and a can-do attitude that, in victory and in defeat, through challenges and transitions, eventually also became one of the strands of the fabric of our lives as a family.

Not Knowing: Grandmom's Story, Part 4

Continued from Part 3 - Grandmom's Story 

One of the things that my dad worried about the most when he was sick and even before then was his mom, who, since the death of my grandfather many years before, had been living alone in a small town in southern Alabama until she suffered a stroke at the age of 87.

My daughters and my dad, with Grandmom, Sept. 2010

For all of my life, I'd thought of my grandmother as one of the most fiercely independent individuals I knew, a person whose goal it was to leave the earth a better place than she'd found it, without asking for much help or (as she put it) "without burdening" others and without using anything as an excuse for not doing her part to help others in need.  Grandmom has perhaps one of the most interesting life stories I've ever heard, with lots of adventures and even more challenges faced along the way.  She pinched pennies, cut corners, and made due for all of her life, but, a deeply religious person, she never failed to tithe or to give of her time when her church or someone in her community needed assistance.  She was well-read, and maybe that was one thing that contributed to her acceptance of people from all walks of life, of all backgrounds and all races, which was not a practice often seen in that time.  From the way I saw things, Grandmom didn't concern herself too much with what a person's income or job title was or with how fancy of a car or house a person had; as long as someone seemed to have a good heart, seemed to be trying to "do right," and seemed to be genuine and kindhearted, Grandmom liked that person, and, like my dad, she extended courtesy and respect to most everyone she met.

Although the level of anxiety and extreme depression that Grandmom had been experiencing seemed to leveled off for the most part over the course of the weeks after she had been told about my dad's illness and subsequent death, her overall health did not improve.  On the afternoon of April 18, 2011, my mom got a call from the nursing home and was told that Grandmom's condition had worsened.  Mom called my sisters and me to update us as she hurried to get to Grandmom's side, where she stayed for the remainder of the day.  With Grandmom's breathing labored and her skin color changed, Mom talked to the nurses and decided to spend the night with Grandmom so she would not be left alone even for a minute.  The staff at the nursing home was kind enough to move Grandmom's roommate to another room so Mom could sit at Grandmom's bedside in privacy.  Throughout the night, Mom read to Grandmom, talked to her, and tried to reassure her that it was ok for her to go on ahead, reminding her that she was so loved and that my dad and my grandfather were waiting for her in heaven.  Grandmom seemed to be at peace, and, as the first light of day could be seen through the big window in the room and with my mom holding her hand, Grandmom took her last breath.

My sister Nancy joined my mom soon afterwards at the nursing home, and together they dealt with the things that needed to done, including calling the funeral home, packing up Grandmom's belongings, and saying their goodbyes.  There were some haunting similarities to what had had to be done after my dad's death just three months earlier, but at the same time this was a different situation for many reasons.  Given all that had happened to impact her quality of life and given her age and overall health, we all knew that Grandmom was prepared to go on ahead and that she very likely welcomed her own passing from this life.  From my perspective, it seemed that she had been leaning into the light for quite some time, dearly missing her husband of 50 years and many others who had gone before her - and feeling that her purpose on this earth had been served.  Personally, I will say that the news of her death hit me hard but that my mourning was much more for my own sake than for hers, and the grief from her passing and from that from my dad's was so enmeshed it was like pouring gas on a fire.  

I found a group email that my dad had sent out just before he'd gotten sick to update people about Grandmom, and I used that set of contact information to communicate the news to many extended family members and friends about Grandmom's passing and to let them know that we had decided to hold a memorial service for Grandmom in her hometown over Memorial Day weekend to give those traveling from out of town time to make the necessary arrangements.  Mom had the obituary run in the newspaper in Grandmom's town and contacted Grandmom's church to let them know as well.  

A couple of weeks later, a violent storm came through the area where I live overnight.  The noise of the thunder actually woke me up in the night, interrupting a dream that I had been having about my grandfather's brother Hilyard, whom I had only seen a few times in my life.  The last couple of times I remember seeing him, he was using a walker to get around; it had been many years since his passing and many more since I had seen him.  In the dream, though, he walked up to me unaided, looking younger than I remembered ever having seen him but so closely resembling my grandfather that it was easy for me to recognize who he was.  He looked at me and said very simply, "Your grandmother and your dad want me to tell you that they are ok," and then, before I could respond, he turned on his heel and strolled away.

When I checked my email early that next morning, I saw that I had a message from my dad's second cousin Carl, Hilyard's grandson, who had heard on the news that the storm had left damage to many homes in my city.  I was touched that Carl was checking in on us; I had not corresponded with him in the past except for the recent message about Grandmom - but I was stunned at the timing of the communication, just about an hour after I had had the dream about his grandfather.  I emailed Carl back and told him that we hadn't sustained any damage in the storm, but, not knowing what he would think if I told him about the dream, I didn't mention it then - but I did a few weeks later at the memorial service for Grandmom.

To be continued ... 

Measuring the Course

As far back as I can remember, one of my dad's routines after he got home from a long run was to immediately jump into the car to drive the route he had run to measure the exact distance of the course.  (This was WAY before GPS systems existed.) Most people would probably choose to sit down to rest as soon as they could after a strenuous workout, but Dad was the kind of person who couldn't stand to let grass grow under his feet.  He taught us to have honor and priorities, to set goals, to set our mind to doing things and then to follow through. WAY before Nike said it, he used to say “Just Do It” whenever he heard someone make an excuse for not doing something they should have been doing; I remember so many tough runs when he would tell me to tuck in behind him so that he could block the wind for me after he'd said “Put your head down and let's just do it.”

If Dad could have “driven the course” at the end of his life, if he could have had the opportunity to examine what he had done and the choices that he had made along the way – I wonder to what he would’ve made adjustments.  Not much, I would venture to guess, and I think that’s pretty damn remarkable.  I'm not sure there are many people in this world who would be able to say the same.

Here's a question with some Food for Thought: What would your biggest regret be if today was your last day of life, and how can you attempt to right that regret?

Bronnie Ware is an Australian nurse who spent several years working in palliative care, caring for patients in the last few weeks or months of their lives. She recorded their dying epiphanies in a blog called Inspiration and Chai, and later she put her observations into a book called The Top Five Regrets of the Dying.  Ware writes of the clarity of vision that people often acquire towards the end of their lives and of how others can learn from their wisdom. "When questioned about any regrets they had or anything they would do differently," she says, "common themes surfaced again and again."

Here are the top five end-of-life regrets, according to Ware:

"I wish I'd had the courage to live a life true to myself, not the life others expected of me."  Looking back over the course of their lives (measuring the course), people often recognize that certain dreams they've had that have not been fulfilled, making this the most common regret of the dying.  And, as we learned when my dad got sick, by the time a person realizes that he needs to hurry to try to realize those remaining dreams, his health (and sometimes other obstacles) often restricts those goals from being attainable.

"I wish I didn't work so hard." Ware says that this was a regret shared by every male patient she cared for (and some of the women too).  What they wished they had done instead of staying late at the office so many times was to have gone to their children's ball games or school programs or to have spent more time with their spouse or other loved ones.  

"I wish I'd had the courage to express my feelings."  Ware says that many people reported that they had suppressed their emotions in order to keep peace with others.  They regretted not having told someone that they were angry with them - or that they loved them.  Sometimes this is a regret that can be addressed in the final stages of life, but many times the years that have passed since the issue began make it impossible to right on down the road.

"I wish I had stayed in touch with my friends."  In the midst of our hectic daily lives, it's easy to lose track of people who have meant so much to you and whose impact you may not realize until it's too late.  Again, sometimes when the person who is dying expresses this regret, loved ones from the past can be contacted, but many times it isn't possible.  

"I wish that I had let myself be happier."   The realization that death is near can give a person new perspective on things, and one of the things that is commonly realized is that happiness is a choice.  The clarity that often comes at this stage of life helps people to see the good in their lives much more clearly than they did before.  Other things like material goods no longer seem important.  People do want to get their financial affairs in order if possible, but it is not money or status that hold true value for them as they near the finish line - it's love, both given and received.  

In Search of Comfort

In the hours, days, weeks, and months after my dad went on ahead, I became aware of a phenomenon that I hadn't ever been in a position to notice before, and that was one of feeling as if I myself were the source of pain each time I had to tell someone else that my dad had gotten sick and that he didn't make it. I felt guilty and somehow responsible for the shock and the sadness that I witnessed descending upon each person as soon as the words left my mouth.  I felt as if I should be able to comfort them.  I wished I could spare them having to know what had happened and I wished I could explain why, but I couldn't do either.  Instead, I had to stand by and witness their pain, their sadness, and their grief, while I was deep in the midst of those feeling on my own. 

If I'd had to guess before I had any inside knowledge of one who has lost a loved one, I would have said that the worst would be when someone didn't know what had happened and I had to tell them.  But what I discovered was that the hardest thing to get through was when I knew someone knew how sick my dad was or even knew he had died but then they said nothing to me afterwards.  It felt like they didn't care, like it didn't matter to anyone except those of us who were so deep in our grief that we could barely function.  It was like salt in a wound; it was like watching and not be able to stop the waves from washing up on the shore and wiping out a one-of-a-kind sand castle in the process.

About six weeks after Dad went on ahead, my husband, my mom, and I attended a business convention that my dad had been a big part of for decades.  Everyone at the convention knew (had known? Damn I hate having to change that verb tense) my dad; he had known many of the people who were there since I was a child or longer and had served as a mentor for many of them over the years.  

The last time any of those people had seen my dad was one year ago, ten months before he died and eight months before he got sick.  They still thought of him as being the picture of good health; he was the guy who was the life of the party, working the crowd and cutting up on the dance floor at night and then heading up a meeting after an early morning run the next day.  People asked what had happened, and I didn't know how to respond. I could hardly have finished processing the series of events over the ten weeks.   Most of the people there had heard about Dad's illness and his death, but it was like they couldn't process it or accept it until they showed up at the convention and saw that he wasn't there for the first time in decades. His absence was blaring, to put it mildly.  In the midst of their shock and in what I guess was an awkward attempt to process the news themselves, several people told stories about other people they knew who had gotten some serious kind of cancer and had survived.  That didn't make me feel any better, and I don't think it served that purpose for them, either; actually, I think it only fueled their sense of disbelief.  We heard a lot of "I'm sorry's" but it seemed like mostly what was said was "I just can't believe it."  Yep, me neither, I said.  What I guess I wanted them to say was that sucks and I'll miss him too.  I wished they had something that would comfort me and my family; I wished I had something that could comfort them - or myself.  But there was no protection, and there was no comfort to be had.  

Sliding Doors

I recently had a conversation with a friend of mine about both of our parents' battles with cancer, his mom and my dad.  Both were diagnosed at an age when they appeared to be in the prime of their lives, on the cusp of retirement, in seemingly good health.  My friend's mom was a long-time smoker but at his insistence had quit smoking a few months before she was diagnosed with the lung cancer that took her life a short time later.  As he was talking about her illness, he told me that he will always wonder if by encouraging his mom to quit smoking he had somehow caused her to get cancer.  He said he knew it wasn't really rational to think that but that he couldn't shake the thought that somehow the thing that had changed in her life before the diagnosis was made was not fortuitous, that there was a link.  I think in the greater scheme of things, human beings tend to want to believe that cancer (or anything else) happens for a reason, that where there's an effect, there must be a cause.  That's what our logical minds often tell us, and it's our way of allowing ourselves to feel like we have some sort of control over, well, anything, when in many cases we just don't.  No matter what the case is, no matter what the cause - if any - cancer is always unfair, and that's really the bottom line. 

Hearing my friend say that he felt on some level responsible for his mother's death made me think about the way that in any death, in any circumstance, there is always room to wonder: what could I have done differently, how could the outcome have been avoided, WHERE DID I LOSE CONTROL?

That conversation also started me thinking about the difference between guilt and regret, two emotions that are different from each other yet are often confused, especially when people are grieving.  In my opinion, the term "guilt" is frequently misused; the term actually refers to something that one feels he shouldn't have done because it was wrong.  In many ways, guilt can be a disabling affliction, just like Cancer.  And, also like Cancer, guilt is something that can happen to anyone at any time, no matter the circumstances.

Regret, on the other hand, is what is felt when when something has happened that has resulted in a loss or a missed opportunity, despite the fact that the person had no control over the result.  Regret occurs when there were circumstances beyond one's control; in short, regret can arise when one makes a mistake. The difference is that what was done in the case of regret wasn't wrong, even though what happened as a result was undesired.  

Many times I've heard people say they feel guilty when a loved one gets cancer, even when that loved one becomes a "Survivor."  I've heard people say they feel guilty for not doing more or for not being there for a friend or family member who has Cancer.   What they more likely mean in both cases is that they regret what happened, even though it wasn't an outcome of their actions.  

I know personally how cumbersome it is to harbor feelings of guilt and/or regret; it is, in a word, awful.  But the most awful thing of all is when the person who is sick feels guilty: They may feel guilty that those who are caring for them are missing work and other things, they may worry about the money involved in the treatment of Cancer, they may feel that they are a burden on others.  They may wonder if they did something to have caused the Cancer or if they didn't do what they should have done to prevent it.  One of my friends who battled Cancer years ago once told me that while she was sick she felt guilty for feeling jealous of people she knew who were healthy, and she said that after she was done with treatment she felt guilty for getting better when so many with Cancer don't.   And although "regret" is the better word to use here, we tend to say "guilt" much more often.

Why does that distinction matter?  Maybe because feeling guilty is, in a sense, blaming ourselves for something that was in no way under our control and/or for something that occurred as a result of an innocent action.  If someone is justifiably guilty for something, they should take responsibility for what they did and then make an effort to make amends whenever possible.  Inaccurately labeling regret as guilt can serve as a huge barrier in the grief process; when one feels responsible for a loss when in fact that person had only the best intentions and had no control over what ended up going wrong, it's easy for him or her to get "stuck" because their perception of what happened isn't based in reality.

All of this reminds me of the concept of the movie “Sliding Doors” (If you haven’t seen it I recommend that you do **Caution: not for kids!**), which is that it is possible for even a small decision to forever change the course of a life.  Surely the vast majority of adults have done some things in their past that they wished they’d done differently.  And when someone you love dies of a terminal illness (or maybe when they die from ANYTHING), it doesn't seem like it would be that unusual to feel at least a little bit of regret, and in some cases some guilt may play a role as well.

Looking back to the time when my dad was sick, part of me wonders – and will always wonder – if I did enough.  If I could’ve done more.  If I should’ve played something differently.  And if I had, would it have made a difference?  

Sometimes I think about the Sliding Doors concept, about different ways that things might or might not have been done as we tried to cope with his illness.  I guess technically mixed in with that wondering are some blame and some anger, both of which I feel are completely justifiably directed towards the health care professionals who in my opinion didn't do what they should have done.  (More on that later ... )  But I also find myself thinking about what-ifs from other time periods in my dad's life - both from before he got sick and whenever I imagine how things would be if he were still here, either having been miraculously cured or still fighting.

As I've mentioned, my dad was involved in lots of accidents during his life, most of which occurred out on the road during his physical pursuits.  Although I can't for the life of me figure out why I do this, I sometimes think about how things would have been had he sustained an injury with long-term effects in one of these accidents.  I always thought Dad had somehow ended up with nine lives (Maybe that's why he considered himself a cat person more than a dog person.)  Now I am left to wonder if he did but I somehow lost count along the way.  To some people, I guess it might seem like my family should have discouraged him from doing things like the running and the biking and the adventure races that sometimes resulted in serious injuries for him, but we always protected and defended his right to continue despite the risks because he loved it and, to be really honest, maybe because we caught a little bit of his "I'm too lucky for anything really bad to ever happen" fever along the way.  

When Dad talked about people he knew whom he thought had "gone downhill" over the years, he always said he hoped that didn't happen to him.  In fact, I distinctly remember several times hearing him say that he hoped when his time came that he went out running.  In a way, I guess he got his wish.

Why is it that "If games" are so common with grief: If only _____, things would be different. If I'd encouraged him to go to the doctor.  If we'd found out sooner.  If we'd chosen a different hospital or different doctors.  I guess it's because whenever our minds create these alternative scenarios, we can imagine an alternate reality to the one that we just don’t want to accept. These counterfactuals allow us to hide the truth, to conceal the reality of pain, if only for a little while.