The Shift

It always feels strange to have something significant going on in my life that people around me aren’t aware of.  I’m sure that’s true for most people; one common example of this is when it’s a person’s birthday and most of the people with whom he or she crosses paths that day don’t know that it is. Whether it’s something good or bad, oftentimes it seems like the information just isn’t comfortable or appropriate or relevant enough to share.  In many cases, I think it would feel awkward, somehow attention-seeking  or maybe even like bragging, to tell the people around me, and in some cases I don’t really even want them to know for various reasons – but it still feels odd, as if I am driving on a side street or an access road alongside the main highway.

That’s how it feels to me going into the week that marks three years from the time my life – and essentially my perspective and my bearings – shifted, the week that holds the series of days during which my dad was taken to the hospital by ambulance, when we found out about the mass in his head, when he had surgery, when we got the definitive diagnosis – and his 67^th birthday which we spent hunkered down in the Neuro-ICU, in shock and in terror.

There is such a maelstrom of emotions and thoughts going on in my head right now, a source of confusion that makes it difficult to know how to identify my feelings or what needs to be done to get me through the time ahead, by me or by anyone else.  Over and over, I wonder in shock how a span of three years has passed already.  I wonder how we got through those days that seem even more unbelievably difficult from my perspective now than they did at the time.  I wonder when each of the series of shifts in me occurred after that first shift – and when, if ever, the process will slow down or come to a halt.  I wonder whether it is better to try to forget about the panic and the pain of the days of my dad's illness or to let the remaining sadness and the swirl of other emotions that goes along with the anniversary of that first week play out; I wonder if sharing my feelings and my perspective is the right thing to do.  

Remembering what was happening at this exact time three years ago is oddly both grounding and disconcerting.  Thinking back about what my dad and the rest of my family were doing in the weeks and the days leading up to the beginning of the trauma, it was as if we were on an airplane right before the plane hit an air pocket causing a sudden drop.  In regards to the significance for me of the upcoming days, a lot like the people around me now, back then I had no idea that a shift was happening, that something was occurring in those days that was affecting someone close to me and that would eventually change everything.

My dad, helping his youngest granddaughter across a rocky path, just weeks before his diagnosis

Anger, Of Course!

Imagine, if you will, that you were just going about your business one day, living your life, and suddenly you became seriously ill or injured.  Now imagine that in the process you became disoriented and started having problems remembering recent events, and then you were told that you wouldn't be able to return to work or do the things in life that you loved doing, maybe for a short period of time, maybe forever.  In fact, you were told that you couldn't have your cell phone or your computer, you were confined to your hospital bed like a prisoner, AND you were in pain that never really let up at all.  

And then: you were told you had a terrible disease, one with a very grim prognosis.

Do you think you might just be more than a little angry in this scenario?

While my dad was sick - from the day he was first admitted to the hospital, through the time of the surgery and the not-so-great stay in rehab, and finally to the time of his hospitalization when he was so weak that he literally couldn't lift his head off the pillow - we only saw a few brief bursts of anger from him.  It's unbelievable, really, given all that was going on with him, the little time he spent expressing this emotion, probably about three hours' worth total over the course of the ten weeks.  

If you know anything about traumatic brain injuries and neuroanatomy, you know that based on the very area of Dad's brain where the tumor was and the multiple traumas that he suffered, coupled with the massive dose of steroids he was on and the utter lack of sleep he got during that time, plus (let's not forget to mention) the (can't think of how else to phrase this that will convey the same meaning) SHITTY HAND he had been dealt in being diagnosed with brain cancer, Anger should have been present every moment of every day for him.  I will venture to speculate, though, that several things played a part in the fact that it wasn't: first and foremost, Dad's perspective, the usual (pre-illness) evenness of his emotions, and his internal happiness meter, which was almost always in the good-to-great range.  Next on the list was probably the fact that during that time one or more close family member was always right with him, which, as comforting as I like the think that was for him, likely resulted in an extreme effort to be positive and to hold it together by HIM so that he wouldn't risk upsetting or disappointing us, in his eyes.  Another factor probably came from Grief; I think lots of time Grief gets a bad wrap, kind of like peer pressure does for kids in many cases.  Sometimes, though, also like peer pressure, Grief can be useful - and for Dad as it was for the rest of my family at the time, the Shock and the Denial it brought about allowed us to Hope and even just to function in what was an almost impossible situation.  For Dad, the understanding of the horror of what was going on that he was able to grasp was likely tempered by the Denial that covered both him and the rest of us. Finally, I think ironically it is possible that the brain injury itself, with the effect it had on his short-term memory, might have allowed Dad to be short-sighted enough regarding his limitations and most especially his prognosis that he was able to dodge much of the Anger that logically should have been there.

The few episodes of Anger that I saw from him during those weeks seemed to stem from frustration, usually aimed himself for not being about to do basic things as effortlessly as he should have been able to, very understandable given the circumstances.  A couple of times, I witnessed him getting angry with another family member, and a few times he snapped at me, mostly from impatience when he was in pain. All were, in the eyes of those of us who were taking care of him, completely justified, and, from my perspective, the only reason they are worth mentioning at all is because it's such a wonder they didn't happen much more often.

One of the biggest bouts of anger he had occurred during a P.T. session on one of the last days he was in rehab.  I had just gotten to the rehab hospital and was rounding the corner in the hallway on my way to the gym, and, when I heard Dad's voice, I stopped short of where he could see me so I could see how he was doing in therapy without distracting him.  As I peeked around the corner, I saw Dad lying on his back on the mat in the Therapy Room, and I heard the Physical Therapist telling him to do ten leg lifts with each leg.  Obviously just wanting to get the whole thing over with, he hurriedly and haphazardly lifted one of his legs a few times and then said he was ready to go back to his room. The P.T. brusquely told him that he wasn't done, to which he responded, "Oh, HELL YES I AM.  A couple of weeks ago, I could run a marathon and not even be tired; I don't want to work on stupid leg raises."  My aunt, who was sitting in on the session, tried to ply him first by playing on his competitive spirit ("Come on, Bill!  Show them what you're made of!" she cheered.) and then, when that didn't work, she tried joking with him ("And a one, and a two, fly like a butterfly, sting like a bee," she chanted, after she'd laid down beside him on the mat and as she enthusiastically did the leg lifts he was supposed to be doing.).  Neither tactic was effective; in fact, he was getting angrier by the minute, and he finally shut things down with a burst of expletives that I won't repeat here.  Suffice to say, he was angry, he'd had all he could take for the day, and he got his point across in the best way he knew how in that moment.

I'm sure it's difficult not to equate sickness and weakness with a feeling of failure.  I can't even start to imagine having to go from doing what Dad was doing to not being able to do what he couldn't, literally overnight.  Thinking about that while he was in the midst of the fight made me realize that beating cancer isn't just about getting rid of those cancer cells.  It's about fighting to stay on top of that win-lose mentality, it's about finding a way to accept just enough and to forge ahead in a quest for just enough, and it's about charging full-speed ahead while somehow at the same time finding a way to stop and smell the roses and to create and hoard those memories along the way.  

From my family's experience when Dad was sick, I became acquainted with the harsh reality of how tough cancer treatment can be on one's body and, just as importantly, on one's spirit.  The very process of having to make what ends up being literally life-or-death decisions based on the Cliff-note version of information given while dealing with the illness,  the loss, and the reality of things is exhausting, to put it mildly.  It feels like it must feel to stand at the bottom of Mt. Everest without any experience and without a trustworthy guide or a map of any sort.

On the day that Dad went to the radiation oncologist for the second time, I had to work and so I didn't go with Mom to take him that day, which ended up being the day that he had to have the face mask made to hold his head in place for the radiation treatments that we thought were coming up.  Afterwards, when I asked him how it went, he told me it was no big deal.  I've since learned, though, that getting the mask made is not no big deal (To read a first-hand account of the process, click  HERE), and I cannot imagine how scary and confusing it must have been for him.  

And that, along with many other things that happened along the way while my dad was sick, makes me feel the burn of the anger that I don't think will ever fade.  

"I know I can't be with you; I do what I have to do.  I have the sense to recognize that I don't know how to let you go."