The Wilderness of Grief

On this day four years ago, I watched one of the best people I have known take his very last breath.  I held my dad’s hand, kissed his cheek, and with tears rolling down my face told him I love him for the very last time.  It was a day at the end of a lot of days that I will never forget, and it was the beginning of an endeavor of a difficulty level that I could not have imagined – and one for which I could never have adequately prepared.

 I’m not sure if I knew it when I spoke the last words I would ever have the chance to say to him, but I told my dad something that day that wasn’t the truth: I told him that I would be ok without him.  I had to say it; I knew that I needed to let him go on ahead with as much peace as I could offer him after all that he had been through.  But, even four years later … I can’t honestly say that I’m ok, at least not as I used to think of as ok.  I’m different, in many ways, and I guess there is some ok in that.  The anguish of missing him every day and of knowing that he wanted to stay here on this earth with us so damn bad, along with the things that my family and I learned during his illness have transformed me forever, for sure.

Grieving in our culture is often very hard: people seem to expect – and to want – those who are in mourning to be ok.  Messages like “Be strong!” and “He would want you to be happy” are the standard, and that is one of the things that makes grieving feel like swimming upstream. 

I remember talking to a friend whose dad had died many years before not long after my dad died.  She was still really grieving, she told me, and I was stunned.  How conveniently naïve I was, about grief and about a lot of things, before the lines were blurred.  Sometimes, when I think about my dad’s going on ahead, about not having him with us here on this earth anymore, my breath catches in my throat and I think, "I am not ready for this."  I know now that, like my friend and like so many others who have walked this path, I will never be really done grieving … and I think that’s the ok that I am left with.

                                                        I miss you, Dad//

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. 

Finding My Way

Four years ago today, I was presenting - for the first time in my career - at a national conference.  I had spent the first part of the week with my family at my sister’s family’s house in California and had flown from there to Minneapolis to go to the conference.  My husband and my daughters had taken a flight from L.A. back home where I planned to meet them in a few days after the conference had ended.

Things were humming along.  I actually remember walking out the door of my house to leave on the trip to go to L.A.; I wouldn’t normally remember something like that from years ago, but there were two things that have made that memory stick in my head.  I remember feeling a little more jittery than I typically do when I leave to go out of town, because this time I was traveling in a triangular pattern, first for pleasure and then for business, and I was nervous that I was forgetting something that I would need on the trip.  The second reason that I still remember leaving my house that day four years ago is that I got a concerning text message from my dad just as I was getting into the car to go to the airport.  As it turned out, that was the last text that I ever got from him - but that's not why I thought the text was important at the time I received my dad's message.

When I heard the ding on my phone indicating that I’d gotten a text, I grabbed my cell phone out of my purse so I could read the message as my husband drove to the airport.  “Met with grandmom’s dr to sign hospice papers.  Hope the girls take news ok,” Dad had typed in his typical shorthand form of texting.   As usual, I was able to read between the lines to understand what he meant despite the somewhat cryptic qualities of his message: At the age of 90, my grandmother (his mother) had been very ill for over two years. My parents had just met with her doctor to discuss her plan of care because of health problems she had been experiencing.  She had been moved into a nursing home a couple of years before due to significant cognitive decline, and at that point she had severe swallowing problems and progressing overall physical weakness.  In the meeting, I found out later, my parents had been told that her condition was continuing to worsen and that she likely only had a few weeks left to live.  My dad, acting as her representative for medical power of attorney, agreed that adding hospice services to supplement the care she was getting in the skilled nursing facility was in her best interest.  As his message conveyed, he was concerned about how my daughters and the other grandchildren would take the news of Grandmom's worsening condition.

Although I could tell what he meant by what he had written, what I realized I didn’t know as I processed the news was how he felt.  Like his mother, my dad was never very touchy-feely; there were many occasions in my life that I witnessed him keeping a stiff upper lip so as not to show his emotions and several other times when it seemed like he was just more of the mindset of “Let’s get this over with” than “Let’s think it over and share how we feel about it.”  As he liked to say: “It is what it is … because what else would it be?”  But on this day, as my husband drove down the interstate, I felt like I needed to somehow acknowledge the emotions I thought it was safe to guess that he was experiencing, and so I texted back, “You are a good son.  Your mom knows that you love her, and you are doing all the right things to care for her.”  I don’t know why I chose those words or even why I decided to say something that sentimental to him at that time; it isn’t usually how we communicated, and that’s why that moment sticks in my head.  Well, that, and the fact that, as I realized later, in what seemed like such an ordinary instant when I walked out of my house and closed the door behind me that day, I was stepping into a life so different from the way I had known it to be.

When I was about ten years old, my dad entered me into one of the first road races I had entered as a runner, and, for reasons that escape me now, it was one of the few times in my running career that I ran in a road race in which he didn’t also run. 

Like many of the races I participated in during my childhood, this one took place in a small town in Mississippi.  In my mind, the scene at the starting line that day blurs into the hundreds of other scenes like it, but what happened over the next hour stands out as a memory all of its own.  In this race, to my surprise, I found myself in a small group of runners that had broken away from the rest of the field about at the first mile marker.  Or, I should say, about at the point where I thought the first mile marker should have been.  For the first seven or eight minutes of the race, there was silence amongst the four other runners and me except for the sound of our breathing as we ran.  Gradually, each of us realized that we had probably covered a distance of more than a mile, and one of the other runners asked if the rest of us were sure that we were going the right way.  None of us were; we had counted on being able to follow signs or directions given by volunteers along the way so that we would know when we had passed each of the mile marks and where to turn on the course.  As we found out later, though, we'd passed by the first turn faster than the race director had expected, and so there was nothing/no one there to tell us to make the turn and we had continued to run straight down the street.  By the time we realized that we were probably off the course, we were well over a mile past that place where we should have changed direction.  We kept running and eventually saw an old man watering his front lawn, at which point we slowed to a jog and one of the other runners shouted to him, “How do we get back to the community center?” which is where the race finished.  The man looked at us like we were crazy and then pointed back over his shoulder in almost the opposite direction from the way we were running.  For some reason, the five of us still didn’t stop running; without speaking, we all hung a right at the next street corner to head in the direction the man had indicated, and eventually we found our way to the finish line.

Since October 23, 2010, the day when the cancer in my dad’s brain was discovered, in many ways I have felt like I did out there on the course in that race so many years ago: lost, confused, exhausted, and in a state of disbelief as to how the whole thing even happened.  But, also like my experience in that race, I am comforted by the fact that I am not having to cover the distance by myself, and somehow that gives me the strength I need to continue along the course.

And that, I guess, is one way that I have changed, in increments over the past few years: I have come to see and to believe that it is human tendency to adjust despite pain and loss – and that resilience is born of character and nurtured by love and connection.

A Push Towards Perspective

I recently came across something written by a woman that I found to be simultaneously heartbreaking and inspiring.  This article, which ran in Vogue magazine entitled "The Long Road Back: How to Keep Going After the Unimaginable Happens," is the story of tragedy - but it is even more about love and strength and coping.

I found some of the words of the author, whose name is Madonna Badger, to be particularly moving.  When she recounts the two things that happened that she found helpful as she was going through the boxes in the warehouse, it makes me think back to the students with whom I worked in the months after my dad died.  Like Badger, through my work, I saw two things occur that nudged me in the right direction in the early depths of my grief: I too had to stay "in the present moment," and I saw for the first time that, although there was often ample opportunity for the grief that was upon others around me to incapacitate them, the people who made certain choices in the midst of hardship were able to survive without losing more of themselves than they had been forced to through the adversity. That, I guess, was my push towards perspective.

The Marker

Before my dad went on ahead, I’d never really considered the way that the birthday of a loved one can transform from something that fills you with anticipation and excitement to something that seems so sad.  It seems so odd to me the way that happens; certainly I still want to recognize and celebrate the birth of one of the most important people in my life, even when he isn’t still here to celebrate himself.  I think for my family, the sense of enhanced sorrow and grief that comes with this week is exacerbated by the fact that it was the same week that he was diagnosed with the brain cancer that took his life only ten short weeks later.  That, as much as his absence, makes it seem counterintuitive to celebrate.

For me, in fact, it feels like salt is being rubbed into a wound, and a lot of the emotions that are usually just hanging out beneath the surface on a typical day seem to be bubbling up and threatening to erupt with the week when everything changed for my dad, for my family, and for me.  The annual marker, which I prefer to avoid thinking of as an anniversary since I tend to think of anniversaries as happy and worthy of celebration, approaches without hesitation and haunts us without regard to our ongoing pain. The week represents such a major shift - an ending of things as they were and an awareness of what should have been.

I long for just one more hour, one more conversation, one more hug, one more anything with him.  I want to push through the pain and focus on the importance of the day of the year on which the man who means so much to me came into this world; the challenge to do so is far greater than I ever imagined it would be. There are so many things that my dad will not get to experience now, things he would so love to be a part of or to know about or to see.  His presence in my life continues to shape me on a daily basis, and I do celebrate that fact as much as the grief will allow. Sometimes though, especially when I can’t avoid the what if, the should have, or the should be kind of thinking pattern, I am overwhelmed by it all, missing him so much that I struggle to move through the ache. The only thing that seems to be of comfort to me when I think about those things is to remember the life that he led that I know he considered to be a great one, to recall the way he was filled with such joy and gratitude, and to recognize the fact that I know if he knew anything at all for certain during the days of his illness it was that he was loved.  Happy birthday, Dad; you are loved and you are missed.