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//

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.

Cancer Myths - and Grief and Anger

I remember studying about the stages of grief when I was in college over two decades ago – and I remember reading almost incessantly about grief just after my dad died three years ago.  There is so much that I didn’t know about grief or grieving before I was thrust into it myself; even while I was reading the words written by the “experts” and professionals in the field, I realized that what had been put down on those pages was just the tip of the iceberg, understated and addressed only in general terms.

Some people think the information that’s out there about the five stages of grief is baseless.  Others seem to think that the stages exist but that the grief process isn’t nearly as clear-cut or as linear as they suggest.  I remember the grief counselor that led the grief support group I attended showing a picture of a graphic representation of the grief process: in that rendition, it looked more like a tornado, spiraling and circling back and forth, which seemed much more accurate to me. 

For me, anger and sadness are two of the emotions associated with grief that keep resurfacing the most often. Sadness, mainly because I miss my dad so much that my heart hurts, and anger, for that same reason and so many other reasons too.  

I’ve written many times about my feelings of anger associated with my dad’s cancer diagnosis and death.  I’ve always thought that I had a long fuse – slow to anger, fairly quick to try to put out the fire whenever possible.  But in the me that I am now, I’m not sure that’s the case – or if it ever will be again.  There are certain things now that launch me into white-hot fury in the blink of an eye, sometimes for reasons that I can’t identify, explain, or understand.  Seeing information like this is one of those things:

“Big Hospital Finally Telling the Truth About Cancer,Johns Hopkins”

I’ve seen this and similar bullshit information posted on Facebook and other sites on the Internet at an increasing rate lately.  It isn’t those who re-post or share the info who make me so angry; it’s the idiots people who write the articles, posing as authorities on a subject about which they obviously enjoy spewing shit like the septic tank hose coming out of an RV of frat boys after a weekend at a music festival fabricating and embellishing for reasons that are lost on me. 

I'm pretty sure he said this in about 400 B.C. and that he didn't mean it literally, because he also said this:

For the record, Johns Hopkins did not publish or endorse the article in the link above, and neither did any other medical institution or research body.  The assholes authors have apparently hooked many readers by weaving some true information in with the idiotic crap exaggerations and falsehoods – and it doesn’t hurt their efforts that the bottom line is that we as a society want to believe that we have control over something as horrible as cancer and death.  As is stated on the Johns Hopkins website, “the gist of this [unscientifically based article full of misinformation]… is that cancer therapies of surgery, chemotherapy, and radiation therapy do not work against the disease and people should instead choose a variety of dietary strategies.”

OBVIOUSLY it’s probably a better idea for health reasons to eat a balanced diet and to exercise than it is to not do those things.  OBVIOUSLY there are cases in which traditional standards of care are not effective against cancer and in which sometimes a supplemental or alternative treatment is advisable when more research-based interventions have failed.  OBVIOUSLY it makes sense to adopt habits that boost one’s immune system.  However … cancer isn’t caused by nutritional deficiencies, nor can it be “corrected” (even just that terminology makes me mad) or avoided by taking supplements, breathing deeply, exercising, or eating foods like blueberries.  Surgery does not cause cancer to spread – and spreading that kind of information could absolutely be harmful if people believe it. 

I remember being told by more than one person (who was well-meaning, I GUESS) while my dad was undergoing treatment for brain cancer that we should keep him from ingesting any sugar because “cancer feeds on sugar.” 

REALLY?  Is that all it would have taken to save him?  ("Ever heard of the Krebs cycle, idiot?" is what I wanted to say in response.  Somehow I held back - but maybe I shouldn't have.)

Of all the ridiculous bullshit fiction out there about causes/treatments/cures for cancer, probably the one that offends me the most is this one: “Cancer is a disease of the mind, body, and spirit."  Some of the most spiritually fulfilled, healthy living, intelligent people I’ve ever known have been diagnosed with cancer.  Both before and after their diagnoses, these people did not have diseased minds or spirits - and it's beyond nonsensical to imply otherwise.

Perhaps worse than the false hope this misinformation seems to seek to provide is the implication that the power to avoid or cure all types of cancers is within each of us, which is an absolute untruth.  I remember the guilt and the pain in my dad's eyes when he asked if he had done something to cause himself to get cancer, and it almost kills me.  A person who is diagnosed with cancer does not need to be made to feel guilty - or contaminated or in need of spiritual "correction" - on top of everything else they are having to cope with.  

I only wish that diet and "spirit" alone could prevent or cure cancer.  If that were true, I wouldn't know what I know today about grief, because my dad would still be here on this earth, happy and healthy.

If you come across one of the articles on the Internet perpetuating misinformation about cancer, I urge you to post a rebuttal, even if it’s just a link to one of these scientifically-based websites:

The Cancer Update is a Hoax (Johns Hopkins)

Don't Believe the Hype: 10 Persistent Cancer Myths Debunked

Let's Beat Cancer Sooner - New Treatment Info

Chapter One, Part 1: Foreshadowing

Isn’t it odd the way that, without a crisis, foreshadowing is just another event that occurs, leading to nothing, with no hidden agenda or meaning.  I guess that’s how life works, though: we go along about our business, day after day, and then one day something big happens and things change.  Things are changed, sometimes forever.  And when the sting of it all eases up even the slightest bit, we wonder if we could have somehow altered the outcome or even if we could have seen whatever happened coming. 

One thing I’ve learned over the course of the last few years is that even hindsight isn’t always 20/20.  Later, when I thought back to the day when my family and I climbed the rope course at the Adirondack Extreme Adventure Course, it did seem like foreshadowing, because it was the first time I’d ever felt like I needed to protect my dad.  It was also, as it turned out, the last time I ever saw him when he wasn’t sick.

For many years, it had been the tradition of my parents, my siblings, and I and our families to get together for a family vacation during the month of July.  The exact dates and the location and even the activities we did on each trip varied each year, but we always made sure our time together included time for hanging out and catching up, one of ways we stayed connected despite the geography in between where each of us lived.  Our gathering place in the summer of 2010 was Lake George in upstate New York. 

One of the activities we did during that time was to go to the Adirondack Extreme Adventure Course, an intense rope course composed of stunts involving zip-lines, Tarzan swings, hanging nets, wobbly bridges, and suspended logs.  Through an Internet search of things to do in the area, I had found information about the park and had encouraged others in the family to sign up.  Unfortunately, I didn't pay much attention to the term "extreme" in the title beforehand. I also didn't realize just how high in the trees the majority of the course would be situated or how long the course was (we later found out it usually takes 3-4 hours to complete the course).  

When we got to the park, we were given instructions and a quick safety lesson, and then we lined up and started climbing.  I knew Dad was afraid of heights, but, as I said, I didn't think the course was going to be roughly twenty feet off the ground.  I was pretty nervous while we were on the course, both for my own sake and because of a few other people in the family whom I knew were struggling for various reasons, including Dad.  In the many athletic pursuits in which I had participated over the years with my dad, I had never felt such a sense of protectiveness towards him; he was the one who was typically having to assist me.  Dad was completely capable of managing the physical demands of the course - he was already in training for the Ironman triathlon at that point - but he was anxious about the distance to the ground.  He wasn't about to quit or even to admit that he was scared, though; that was for sure.  As always, Dad stuck with it and finished, laughing and cutting up along the way.

No one could have possibly predicted what would be going in the months ahead – Dad’s diagnosis, his struggles with the many challenges that his illness brought, or his death.  While Dad was sick, I often thought back to the time when I was watching him on the Adirondack course that day.  I could clearly remember feeling like I needed to safeguard him, to shield him or "spot him" on the bridges and ropes, maybe not as much from what was required of him along the course but more from his apprehensiveness; I didn't want him to be scared.  It was a weird kind of foreshadowing for the way we would have to guard and encourage him though the fear and instability during his fight with cancer.  

At the end of that trip to upstate New York, my immediate family ended up being stuck at the airport in Albany because of a delayed flight due to thunderstorms across the country; my parents made it out on their flight on time.  After they had gotten home, Dad texted me to check on us and commiserated with me about the inconvenience of the lateness of our adjusted schedule.  "I hope you make it home ok," he texted when I told him that our plane had finally been cleared for take off, the second-to-last time he would text me, ever.  And, only five months later, I said goodbye to my dad for the very last time, and, in the early hours of the morning later that night, I laid my head down on the pillow to try to sleep and found myself crying so hard that tears threatened to fill my ears.  I tried to stop but couldn't, and then I squeezed my eyes shut and felt that same message flash from me to my dad:  "I hope you make it home ok," I thought between sobs, and then I added,  "I miss you, I can't believe this whole thing happened, and I don't think I can make it without you" - thoughts that would run through my head at least a thousand times in the days and months to come.