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.

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.

Lessons

Life, for the most part, is full of the mundane, the predictable, the obvious, the day-in/day-out routine.  We get up each morning, get dressed, eat breakfast, go to work or school, run errands, take care of the kids, make dinner, clean up, and go to bed.  Repeat.  It is easy to become complacent, to take it for granted, and even to sometimes complain about the little things without realizing what a blessing things around us really are.

And then, in the blink of an eye, everything changes.  We are jolted out of our reverie, forced to refocus and to reevaluate pretty much everything.  And even as much as we might wish that things would go back to the way they were, things are changed.  We are changed.  And, for better or for worse, so is our perspective.

In a way, the holiday season was part of the repeating loop for me over the years.  Certainly the joy and the excitement were there, especially seeing the wonder and the happiness in the faces of the children in the family.  Looking back from this vantage point, though, I can see that I spent too much time worrying leading up to and during the holiday season each year.  I worried about when and how the Christmas decorations got put up, I worried about having the “perfect” gift for everyone on my list, I worried about what I would prepare for holiday get-togethers, I worried about getting a photo for the annual Christmas card and getting the cards addressed and mailed out in a timely manner, and I worried about making sure that my kids had an action-packed, memorable (at least what I thought was memorable at the time) holiday season.  A lot of the stress I felt during the season was admittedly self-inflicted.  And, as I see it now, a lot of it was unnecessary and unproductive. 

 As I got out the Christmas decorations this year, I thought about years past when I did the same thing and I thought about when my dad was sick.  The hustle and bustle was still present that year - it was just focused on a different set of priorities.  My kids did most of the decorating at my house that year; I was out of town helping to care for my dad a good bit during that the time.  I did 100% of my Christmas shopping online, much of it late at night in between conversations with Dad.  Some of the gifts did not get wrapped, and a few even got left behind in the transport between my house and my parents’ house, where my extended family gathered on Christmas Eve and Christmas Day, taking shifts being with Dad who was in the hospital in the ICU at that point. 

I will never forget how awful it was being in the hospital that Christmas.  The hospital cafeteria closed after lunch on Christmas Eve, and families of patients in the hospital had to fend for themselves for food for the next day and a half after that.  The roads were icy and travel was precarious, and everyone in my family was so, so sleep deprived and concerned about Dad and about each other.  None of us cared about opening gifts or celebrating; the only thing we really wanted to do was to spend time together and to do whatever we could to try to help Dad.

I thought about that a lot as I lifted each string of lights and each ornament out of the boxes again this year, and here’s what I realized:  As tough as things were that Christmas, not for one second did any of us lose sight of the value of being there together.  No one in the family ever said anything like this isn't fair or I'd rather be somewhere else or doing something else.  Together we struggled through my dad’s illness and death and together we have struggled through the grief since then, the day-to-day routines as well as the holidays that have come since then now colored in a very different way.  The lessons I learned from all that we went through that holiday season are things that I am certain will never leave me – things like how it’s more important to focus on the joy and togetherness of today than to worry about the details of tomorrow, especially when much of tomorrow is out of our control.  Like how it’s important to ask for help when help is needed and how stuff is just stuff.  Like how when one of us is sad or exhausted or discouraged or sick or hurt, we are strong as a whole.  And like how, even in the midst of the everyday, it's possible for perspective to reflect the riches that we are fortunate enough to hold in the moment.

Well Worth the Effort

Many mornings when I get up before the sun rises to see my daughter off to high school it reminds me of how I used to drag myself out of bed in the early morning on school days when I was her age.  I got up then, though, not because my school started really early like hers does, but because I had to get in a run before school when I was in the midst of a training season for track or cross-country. 

Early morning running with my dad

I’ve never been a morning person.  On most days, I get up because I have to, not because I want to at that particular time, and, truth be told, I hated getting up for those early morning runs.  It was always dark, and the temperature always seemed to be cooler than I preferred, even in the late spring or early fall months.  I was always a little stiff and often so tired at that time of day that I could hardly keep my eyes open as I ran down the street, guided by the streetlights, counting freshly thrown rolled-up newspapers in the driveways to pass the time as I went along.  Many afternoons or evenings when I ran, often for the second time in the same day, I did it because I loved it, but, on those mornings, I did it because my dad expected me to put in the extra effort.  It was part of the plan he had written out for me each week, the training program that he said would pay off at the next race, which, for me, was always just around the corner.  I loved the racing part, too, but not those morning runs – those I just struggled through.

I remember on so many occasions looking up as I crossed the finish line at the end of a race so that I could see the look on my dad’s face.  I judged my performance in each event by the look I saw in my dad’s eyes at the end of the race; in an instant, I could tell what he was thinking – and many times it was this: it was well worth the effort. 

I knew it then, and I know it even more now: there is such privilege that comes with knowing someone well enough to know what he or she is thinking, a secret code of which it is an honor to have an understanding.  I often think back to the few episodes of perhaps oddly placed confidence that I had when I was helping my dad during the weeks of his illness. One instance in particular occurred on the day my dad went from the hospital to a rehab facility across town. The hospital staff wanted to have him transported by ambulance, but I felt it was essential to his mental state not to have to ride in another ambulance at that juncture in his recovery. Somehow, from out of necessity I guess, I found the confidence to tell the nurses that I was certain I could safely help him get from a wheelchair to the car at the hospital and then from the car to the wheelchair and inside the rehab facility.  "I have no doubt I can keep him safe," I remember saying to a couple of nurses in the hallway outside his hospital room.  I felt like they were looking at me doubtfully, but they said ok and that was that.  I am trained in assisting with patient transfers like that, but I work with children, not adults.  I felt sure though; I knew I would do anything to help my dad, and I was confident that together our effort would pay off.

Doing whatever it takes, with both of us wearing the same expression of determination

There were a few more things that happened like that while he was sick, with my certainty coming from almost out of the blue, each time tied to the fact that I was completely determined to do whatever it took to help take care of my dad.  The most striking bout of unexplainable conviction that I experienced during his illness, though, was when he asked me how we would know what he wanted if he lost the ability to talk.

“I’ll just know,” I told him, somehow without missing a beat after he threw that question out into the room.  I cannot explain the sense of sureness I felt in the moment; looking back, I realize that it would have been much more reasonable for me to feel a sense of terror and uncertainty in the moment.  We were in the den of my parents’ house, the day after we’d brought him home from the hospital for the last time.  It was New Year’s Day, and my dad had not rebounded the way I’d thought he would once he was on his home turf.  He was still trying to eat to get his strength back, and he had been asking for small servings of food since he’d woken up that morning: “maybe a piece of bacon,” “some fruity dessert,” (which is what he called the cut-up pieces of fruit in a plastic bowl purchased from the produce section at the grocery store), and, the request always accompanied by a gesture of the quiet snapping of his fingers, “just a little piece of chocolate.” He’d asked for and had eaten a little of each, along with a sip of his favorite beer, Foster’s, which he drank through a straw while he sat up against the cranked-up mattress of the hospital bed in the middle of the den.  His voice was hoarse and breathy, and it seemed to be getting weaker as time went on despite the efforts of my dad to eat and take medicine that was supposed to make him feel better.

His concern about losing his ability to talk was legitimate, and I honestly don’t know the source of the confidence I heard in my own voice when I answered his question that day in the second-to-last verbal exchange I ever had with him.  I guess I would have to say it was an accolade of sorts for the extra time the rest of my family and I had been lucky enough to have with him over the weeks of his illness as we battled along with him.  I knew that if necessary, I would look at my dad and just know what he was thinking, just like those times many years ago when I crossed the finish line of a race. And again, it was well worth the effort.