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.

In Terms of Pain

There’s a weird thing about relativity that goes on after watching a loved one suffer and then die from cancer: pretty much no ailment really seems all that bad.

When I start to think that I don’t feel well, my thoughts immediately go to the look on my dad’s face when he was so sick, the confusion in his eyes when he asked over and over “Why am I not getting better?” and the desperation in his voice when we brought him home from the hospital for the last time and he asked me, “Are you sure we have enough medicine?”  I feel certain that the emotional pain he was in and the stress he felt for so many reasons were worse than the physical pain towards the end; all of it was nothing short of torturous.

So these days when I think about something like pneumonia, I think: not that bad.  A bout of the flu?  You’ll get over it.  A migraine?  Take some medicine and quit your whining.  Throw your back out?  Give it a couple of days and it’ll be like it never happened.  Common cold?  Jesus, get ahold of yourself you freaking wimp.  These are not things I say to other people (not out loud, at least), but I definitely say them to myself, just one more way that my perspective has changed.

I remember both times my dad was in the hospital and the staff seemed to be constantly asking him to rate his pain. Every time he was asked, he was shown a little visual guide; it seemed to annoy him much more than it helped him.  He always did what I came to think of as "white coating" his response (sugar-coating for the white coats); the number that he gave and that was recorded in his medical chart was always lower than it actually seemed to be to those of us who spent a lot of time with him.  Many times Dad was very obviously in pain, grimacing and asking for a cold cloth to be placed on his head, and then when a health care worker walked into the room his demeanor shifted:  "How's it going, Doc?" or "I hope your shift ends soon - it seems like you've been here for days and I know you're tired!" he would say. Truth be told, sometimes it made me angry, not necessarily at him or at the staff member but just in general at the fact that he felt like he needed to pretend to feel better than he was actually feeling.

Several times I thought about following the nurse or whoever had asked him to rate his pain out into the hallway to ask them to put a footnote explanation alongside the number Dad had given, but for some reason I never actually did it.  What they didn't realize besides the fact that Dad tended to "round down" was that his natural pain tolerance was about 100 times that of most other people, the result of decades of enduring grueling athletic workouts.

I know it’s not a contest, and I know that pain is pain and sometimes it just helps to let out a moan or a cuss word in complaint of the discomfort that’s ailing a person.  But, like pretty much everything else in life, pain is linked to perspective.  I WISH I STILL THOUGHT A HANGNAIL or even a raging case of poison ivy was worthy of whining.

A Changed Form

It’s difficult to know what to do or say or even think on a day like today; how does one mark a milestone that they wish didn’t have to be?

Today marks three years since my dad went on ahead.  Three years – that seems so unbelievable.  There has been so much pain, and mourning, and missing him in that time.  There has been a lot of change, too, some for the better and some, well, probably not so much. 

Here's what I am working on at this point: living - and thinking - so as not to allow cancer or sadness or grief to rob me or my family of anything more.  Because what I have learned in this past year is that it's so important to see the good in the moments, even when the grief makes things look blurry. What I have been working on since I sat in this same place a year ago is finding ways to make sure I don't miss the good, the happy, the important moments, even as much as I miss my dad.

It would be so easy to fall into the habit of viewing things as a misfortune, an unfairness, or even a disaster; one thing I've learned for sure since my dad died is that getting a foothold on perspective doesn't always come naturally - it often takes work and effort.  For me, at this point, there are times when the grief is still really thick, but I can tell that it has changed form. I think so often that Dad would be shocked and probably even more disappointed than touched that there are those of us who are still so much in mourning; I know he would want those of us he loved and cared for to be happy. That thought pushes me to try to do better, to be better, to do my best, just as my dad pushed me to do so when he was physically on this earth.

And so, through effort and dedication, I continue to be transformed as time marches on, and so does my grief. Instead of leading me as it has, the grief mostly seems to accompany me these days, still present but in a changed form.  I find myself sometimes having to reach to feel him around me lately, which brings about a new type of fear and a new form of heartbreak.  I am able to say that I am happy and grateful in the midst of it all, though, even though when the tears and anger come as they still sometimes do, I miss Life for him - and I miss him more than I ever thought possible.

Worrying

For as many things as I like to think that I got from my dad, whether by nature or by nurture, we had one core difference: I am a worrier and, simply put, he wasn’t.

I, like others with tendencies similar to mine, call it planning, organizing, taking care of the details.  I consider it a necessary part of life and, truth be told, I do it pretty often; his philosophy was that whether or not one worries is a personal choice.  He and I had many conversations about this topic over the years, including several during the weeks that he was sick, and he told me many times that from his perspective there were alternatives to worrying, like “just doing it,” or “going with the flow.”  He was a great list-maker, often leaving sticky notes and legal pad pages of reminders for himself around the house, on his desk at work, and even in his car.  That, he said, was a way to get worry off his mind.

That stuff doesn't work for me, though.  I don't feel like it's my choice to worry or not to worry, and making lists (as I do as often as my dad did) lessens the worry but doesn't turn it off. 

This is what a supreme worrier I am: I often read books while thinking about trying not to leave a mark on the book that will affect its condition.  I try my best not to get smudges or water marks or creases on the pages as I read.  My dad, in contrast, concentrated on thoroughly enjoying a book as he read through its pages.  What a joy I have found it to be to look back through the books he read and to see the marks he left behind, the crumpled pages, the sticky notes, the underlined and notated passages, and the dog-eared corners.  What pleasure it brings me to look at those things and to know that my eyes are where his once were and that he so completely basked in the moment when he was there, on that page in that book.  It’s like seeing the scrawled “I was here” written somewhere, and it makes me smile and warms my heart.  It also sometimes makes me think again about the benefits of worrying less, or, as my dad would say, choosing to do something besides worrying. 

Maybe that’s why the anxiety that Dad experienced during his illness, especially during the last two weeks of his life, still haunts me so much.  It was so uncharacteristic of him to be worried, and the rest of my family and I felt so powerless in our ability to quiet his fears and quell his distress.  More than anything during his last days on this earth, I wanted to take away that worry, which I knew would ease his pain. I think back to his last night in the hospital and to the next two nights after that when I took a turn sitting up with him as he struggled to sleep and as we worked to get control of the panic and the pain, and my heart hurts to remember the worry etched in his face.  Sometimes the medicine would help, but more often it was the presence of someone he trusted completely that seemed to help ease his mind.

I remember sitting beside his hospital bed in the semi-darkness of my parents’ den after he’d come home and listening to him worry aloud about things that he could not control.  I tried telling him not to worry, I tried to let him know that we only needed to focus on the really important things, and I tried to convince him that others of us would take care of the things that seemed to be on his mental to-do list, but that just seemed to agitate him more.  Finally, I waited for him to pause to take a breath, and I said, “It’s going to be okay, Dad; I hope you can choose not to worry so much,” and he turned toward the sound of my voice in the darkness as if those words were my arms going around him.  A minute later, the talking stopped and his breathing slowed into the rhythmic pattern of sleep.  I stood up to cover him with an extra blanket and then tucked in beside him, half on the couch and half on his bed, with my head on his shoulder, thinking that maybe I could absorb the burden of the rest of his worries during the remainder of the night.