more than anger

    
     A hermit crab seemingly wanders aimlessly on the beach.  No discernible direction.  It can traverse underwater withstanding the rough surf while still being able to breathe; or, it can readily glide through the ephemeral medium of air picking for tidbits of food along the beach.  When in the shell, it is safer from danger, but unable to move.  In order to move, it risks exposure and emerges from the shell.  In order to grow, it must abandon its shell altogether in search of another that fits better.  Neither exclusively terrestrial nor aquatic, it is the embodiment of adaptable and aimless purpose.
     Cancer is named for just such a crab, specifically the zodiac sign of the crab which is Cancer.  Early healers observed that the tumor and its blood vessels ran in every direction, much like a crab would navigate.  The fact that a zodiac sign was used is curious to me.  Did it signify a feeling that dealing with this disease is akin to our fates being controlled by the stars?  In other words, much of cancer is out of our hands. 
     It takes us into places that we did not know existed, into areas where we cannot breathe, where the waves beat us senseless, where there simply is no direction.  Retreat into the shell or risk exposure by growing?  This particular hermit crab was found on our yearly pilgrammage to the beach but this trip was far different from previous years.  The planning of the trip always fell under the purview of my brother.  It first started out with just him and his wife when their kids were quite young.  It then slowly grew into a larger family affair centered on Mother's Day.  Last year, he delayed it because my finals overlapped with the traditional date.  I remember the trip well.  At the time, the chemo had worked well giving us a short lived sense of hope.  He and I were bodysurfing in the waves feeling the joy at life.
     This year, he died on the weekend that he had planned on having the trip.  We wondered about whether we should go at all this year.  The loss was still too raw, too soon, and the trip was his trip.  How could we go without him?  So many more feelings than just anger.  But we went.  A customer of my dad graciously offered us her beach house for free.  She had lost her husband to cancer recently and knew all too well its sting.  Shortly after my wife and I arrived at the beach house, my dad yelled from the other room, "COME AND READ THIS."
     "Hold on, mom's showing me something."
     "NO, COME NOW!"
     He had a message from MD Anderson.  One of his brothers tested positive for being a potential stem cell donor.  The trip became all the more imbued with confusing emotions.  Missing the lost, or celebrating the chance at life?  How does one do both?  Mourning and celebration are nearly mutually exclusive emotions.  I know that firsthand.  It's counterintuitive and requires emotional contortions, but it is possible.  It's a bit like a wandering crab moving from liquid to air, from the safety of the shell to the exposed danger of searching out a new shell.

anger - the bloom

     Just a few short days after my brother died, his son was staying down at our house in Houston.  He slept on our couch.  The next morning I asked him, "do you know your dad built this couch?"

     Of course he did.  He soaks up everything that touched his dad.  He even wears his dad's Michigan football sweatshirts in the Texas summers.  Like I said, he soaks up Everything.  Including the couch.  "Do you know why it's so long?"  That he didn't know.

     My brother made this couch when he was in college.  It served as his bed during one year of living in a house with some buddies so it had to be extra long to fit his 6'4" frame.  He gave it to my wife and I when we were newlyweds.  We had zilch so any furniture was well appreciated.  Come to think of it, we had zilch for anything.  He also gave us his car.  That's the kind of guy he was.  A heart as big as his height.  When we got on our feet, I offered the couch back to him.  His craft at woodworking had improved greatly so he turned it down.  He made that couch during his "Cargo" phase.  He had moved on past that.  My wife, however, developed an attachment to the couch.  So we kept it.  Who knew that couch would become a vessel to carry his memory.
     And after I told the story to my nephew, I felt hollow.  I'm not sure what I was expecting.  I guess that I hoped to give him some piece of his dad, no matter how small.  But that seemed such a futile effort.  How could it be anything but impotent?  What was I supposed to do for his son?  He didn't tell me.  He left no instructions, no guidance, no path.  I'm left sorting through my own anger while trying to figure out how to relate to those he left behind.  I began waking every morning with a sense of anger.

the needs of the dying

Even though this is a difficult time in my own life, often my main worry is about how my condition is affecting my loved ones.  They seem so lost, so burdened, so alone with all of the changes they are experienceing, and all the responsibilities they shoulder.  And what about their future?  How are they going to cope after I am gone?  I'm afraid I'm leaving them stranded and alone.  Some days, when everyone comes in with different emotions and needs, I am too weak to handle it all.  I can't possibly listen to everyone and all their burdens.

Very, very, very true.  My brother voiced concern over his kids and his wife on many an occassion to me.  Too many to count.

anger - the seeds

      I took the summer off from all school related activities.  The research project I had lined up went into the dustbin.  Instead, I planned on spending my summer grieving.  I figured that I have about 10 weeks to get to some level of functioning that allows me to engage and handle school.  If I haven't reached that stage, I will be in trouble.  Big trouble. 
     But grief doesn't exactly work that way.  As my dad told me, "let me know how that goes for ya.  I've never known emotions to follow a timeline very well."  I have no delusions about being over the grief by then.  I just have delusions about being able to engage school without having to forget the loss of my brother or the struggle of my dad.  If I have not attained some level of comfort with the pain by then, I will be forced to compartmentalize myself in order to finish school.  Emotions will be pushed aside in order to study.  I don't want to have to do that but I will, if necessary.  I am determined to finish what I have set out to experience.  To that end, I have one final demon to exorcise.  Well, that's probably naive to think it the final one.  Not probably.  Most certainly it's naive and foolhardy to think it's the last one.  But it's a biggie.  And a painful one.....

      Time was short.  I didn't know how much time was left but I knew we were entering into the final phases.  I figured it was time to lay my heart all and say what I needed to say before it was too late.  "Is there anything, anything at all, I can do for the kids?"
     "Like what?"  Perplexed or irritated, I could not tell.  Perhaps a little of both.  Was I being presumptious in thinking that there was anything I could do?  What could I possibly do that would lessen the coming sting of death felt by his kids?  Was he thinking he could still beat this disease?  Was he simply exhausted and in too much pain to discuss it?  I will never know.  He did not tell me.

needs of the dying

Here's the most important thing: I want you to see me as a whole person, not as a disease, or a tragedy, or a fragile piece of glass.  Do not look at me with pity but rather with all your love and compassion.  Even though I am facing death, I am still living.  I want people to treat me normally and to include me in their lives.  Don't think that you cannot be completely open with me.  It is okay to tell me if I am making your life harder, or that you are feeling afraid or sad.

     Wow.  That first one was definitely true for my brother.  True story.  I'm staying down at a hotel with him while he got the radiation treatments.  We were talking, a deep and hard conversation.  Then there was a silence that hung in the air.  I sat with him for maybe sixty seconds to see if anything else needed to be discussed.  He broke the silence with, "why are you looking at me?"
     "I was just making sure I didn't have anything else to say," was my response.
     "Well, mom will just stare at me and it freaks me out."  And with that, I retreated to the other side of the room.  It's hard to hide in a hotel room.  Not exactly a lot of corners and his condition precluded me from giving him his privacy by up and leaving.  I know what he meant, though.  He'd said it multiple times.  He despised how this disease had come to define him through it's limitations.  He wanted to be treated normally.  But there were things he couldn't do so we had to do them for him.  It left him feeling weak and burdensome.  It was a constant struggle because the disease kept changing the rules of the game.  We'd figure out what he needed help with and what he could do on his own.  He had some semblance of autonomy for a period.  But then the disease would take that away, too.  So he'd need more special treatment which just further fed the feeling of being treated as a disease instead of a person. 
     That last sentence was not true, at least for me as I related to him.  He hated feeling like a burden.  So I always told him that cancer was the burden, not him.  I never sensed that he was ok with that metaphor.

the needs of the dying

Do you know that I'm afraid to express my true thoughts and feelings?  What if everyone I care about runs away and leaves me all alone?  After all, you might not believe how hard this really is.  Thats why I need you to reassure me that you understand my suffering, and that you are willing to stay with me through the process of dying.  I need to know that you will listen to me, respect me, and accept me, no matter what sort of mood I am in on any particular day.

     I don't know if that first and second sentence was true for my brother.  Never said it to me.  There was definitely fear present.  In all of us.  Myself included.  Him, too.  I do know in the very beginning, he asked his wife to be strong for him.  Needed her to not let the emotions out in front of him.  Also expected it from my mom, now that I think about it.  Was he afraid that we might abandon him?  Wow.  I certainly hope not.  Did we give him enough reassurance?  Enough confidence in our love?  I believe so.
     But that third statement.  The one about how we as outsiders do not know how hard it truly is.  He said that to me.  Multiple times.  Usually with anger.  My dad, too.  His was with anger, too.  Definitely true.  Very true.  And they are right.  I don't know.  I don't have cancer.  And I never want to know what that's like.
     And the last part about acceptance?  We all need that one.  Regardless of living or dying.  Every single one of us.  No matter the depth of feeling.  Or, how dark the mood.  Every.  Single.  One of Us.

the needs of the dying

     On the recommendation of a professor, I started reading the book Facing Death and Finding Hope:  A guide to the emotional and spiritual care of the dying.  Her husband was diagnosed with acute leukemia at only 24 years of age and died about a year after.  And from where I sit, it doesn't matter much what kind of cancer a person has when it comes to dying.  A cancer death is a brutal death.  Her loss occurred back in the mid 70s when the hospice concept was just getting started.  After her husband's death she became heavily involved in the local hospice programs.  From her experience, she writes one chapter where she says:

After years of listening to many people who are dying, hearing them try to articulate what they need during this most difficult passage of their lives, I will try to speak for them to you, their loved ones and caregivers.  I will speak with one voice representing all their many voices, communicating the emotional, practical, and spiritual needs of a human being facing imminent death.

     Some ring true, very true, either from my perspective, from what I heard my brother express or from what I witnessed of us surrounding him.  I'd like to dole them out in small amounts.  Reading them all at once was a bit much, at least for me.

I am going through so many changes; I feel so uncertain about my future.  Sometimes all I can see in front of me are those future things I am afraid of.  And each day, my fear ignities a different emotion.  Some days I can't take it in and I need to believe it isn't happening.  So there might be days or even weeks that I will feel sad, or act irritated.  If you can listen and accept me, without trying to change or fix my mood, I will eventually get over it and be able to relax, and perhaps even laugh with you again.