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. 

Juxtaposition

It was a cold morning, and I was alone in the car when the call came the first time.  It was my mom calling, telling me that I needed to come as quickly as possible because my dad’s condition was getting worse.

It was on another cold morning just over two years later when the call came the second time, and I was alone in the kitchen of my house when I answered the phone and heard that I needed to come.  But this time it was my brother-in-law David, calling to tell me that my sister Nancy was in labor, news that I was so happy and excited to hear.

Looking back to the time just before the first call, I was expecting the call to come at some point, although on some level I believed that there could be another outcome, better news coming instead or at least the bad news being delayed for a long time.  The second time, though, I knew the call was coming soon, and I had been eagerly awaiting hearing the words at the other end of the line.  We would be gaining a new member of the family this time.

Both times when the calls came, I dropped what I was doing and frantically packed a suitcase.  Both times, as I backed out of the driveway, I promised to my husband that I would keep him posted about what was going on after I’d gotten there.  Both times as soon as I'd gotten on the road, I called my sister Jennifer to talk to her about her plans for travel from where she was in California, and then I drove in silence while so many thoughts and emotions ran through my head that I finally had to turn on some music.  When Jennifer gave me her flight information after the second call, we both realized that the departure and arrival times of her flight that day were identical to those after the first time the call had come.  And we both knew that she would again be racing the clock to get there in time, with none of us having any control over whether or not she would make it there soon enough.

Both times after I’d started my drive along the same route, I struggled to control the panic I felt rising up in my chest.  Both times, I felt desperate to talk to the person about whom the call had been made: the first time, my dad, and the second time, Nancy. I wanted to call one of the people already there but knew my call would be intrusive in the midst of what was happening there.  Both times I knew that there would be little to nothing I could do to make things any better, and yet both times I felt an almost indescribably pressing need to get there, a magnetic force pulling me east along the interstate.  As I drove, I thought about how odd it was that that particular day was just a regular day for the people in other vehicles I was passing along the road. 

I stopped for gas along the way both times, and, as the fuel pumped into the car, I texted others in my family to see what was going on and to report on my estimated time of arrival.  Both times I called Jennifer again once I got back on the road, and we talked about what we thought would be the quickest way for her to get from the airport to where I would be when she arrived.  Both times I heard the rising panic in her voice when she talked about having to be cut off from communication with the rest of us while she was in the air, and both times I assured her that I would take care of things until she could get there and that transportation would be arranged for her by the time her flight had landed.  Both times I told her that I believed she would make it there in time, and both times I could only hope that that prediction would hold true.

The first time when the call had come, my destination was my parents’ house, but the second time it was the hospital, one chosen by Nancy for her delivery because it was a different hospital from where we had been both times during my dad’s inpatient stays.  Both times when I arrived, I turned the car off and made myself take a few deep breaths before I hit the ground running.  Both times I was acutely aware that life for everyone in my family was about to change.

On both of those days, there was a flurry of text messages and emails being sent between family members across the country.  Both times, I knew my mom and my brother-in-law David were keeping things under control as I traveled, but I wanted to be there to see what was going on for myself.  After I had arrived and had checked things out, both times I reported in to the rest of the family, and only then did I feel like I could breathe. 

On both of those days, I considered driving to the airport to pick up Jennifer when her flight came in but was afraid to leave, and so both times I asked my aunt to get Jennifer to us as quickly as possible.  Both times I remember feeling relieved to be there but at the same time feeling restless, as if I needed to have something to do in the chaos of what was going on around me.  On both occasions, there was an air of surrealism in the knowledge of what was about to occur, and both times the room was filled with emotion.

Jennifer swept in with a sense of purpose like I’d seldom seen before in both cases.  Both times I watched her hug Nancy, David, and my mom, and then when she hugged me I felt such a sense of relief that she was there with us.  There was an intimacy in the room that is difficult to describe, one that created an odd sense of control in a situation that we knew could not be controlled.

The second time, the tears we cried were of joy and excitement and relief; the happiness in the room was like a salve.  Again, those of us in the room made phone calls and sent messages to others who weren’t there, this time with the news of a new beginning.

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.