Surviving Survivor's Guilt

"I miss you so much," I whispered, tears streaming down my face.

"I know," he said gently.

"It has been really hard for me without you."

He paused, and while lightly squeezing my hand, said "It doesn't have to be."

This was the actual dialogue between me and my late husband Patrick that happened during the first dream where he visited me since he died.  I woke up abruptly, grabbed my phone, and wrote it all down.  It was 2:26 A.M., just two months ago.  I don't remember many details of the dream, but I continued my note and wrote: "There is a deep knowing on his part of how I have suffered.  He has an intense desire to communicate that I don't have to live this pain anymore.  He wants to free me from the guilt associated with moving forward."

The concept of "survivor's guilt" is something that I thought applied only to events like car crashes or natural disasters.  According to Wikipedia, survivor's guilt is "a mental condition that occurs when a person believes they have done something wrong by surviving a traumatic event when others did not."  I did not know that this could apply to living through the trauma of my husband's brain cancer and death.  Of course, I also did not know that these events would lead to my diagnosis with post traumatic stress disorder - and apparently survivor's guilt is defined as a significant symptom of PTSD.  This was just one of the many unexpected consequences that appeared in the fallout after Patrick died, but it has been one of the most difficult to manage. 

I have talked a little about my experience with the guilt only those left behind will feel in my earlier posts.  But, since it has become one of the most pervasive leftovers of the grieving process, it seemed important enough to spend some time delving into.

I spent years putting Patrick on a pedestal before he got sick, so when he became ill, all I could think was that Patrick was a better person than me.  He spent his life serving others in our recovery fellowship and literally saving people from the brink of death.  He had two beautiful children who were his world, and he was theirs.  He was handsome.  He was funny.  He was in impeccably good shape for any age, let alone a man of 54.  His biggest vice was the obscene amount of Irish cream he put in his coffee every day.  Why would he, of all people, be delivered the grave news that he had glioblastoma, the worst type of brain cancer with a survival rate that all but guaranteed he would miss out on what could have been the best years of his life?  Why should he have to suffer the indignity of slowly losing his ability to take care of even his most basic needs, all while spending much of his remaining time unable to communicate due to the aphasia caused by his tumor?

I cannot tell you how many of my waking hours were spent wishing that I could trade places with Patrick.  I wanted to take away his suffering.  If I could have, I would have gladly made it my own.  I think that part of the reason why I took it upon myself to be his care partner, and to be at his side without fail through every day of his illness, is that at some level I believed that I was the one who deserved to be sick.  For all of my adolescence and adult life, I have dealt with depression, anxiety, and a multitude of addictions.  Before Patrick, I made terrible choices in romantic relationships.  My first real boyfriend was a violent, practicing (as opposed to sober) alcoholic and our relationship ended in a restraining order.  I thought I was destined for my happily-ever-after with my second boyfriend, but unfortunately he spent as much time romancing other women as he did wooing me.  Despite graduating second in my class from law school and making a good amount of money as a litigator, I truly felt I had nothing to show for my career choices besides chronic migraines and a mountain of debt.  I did not have any children.  I did not see any significant mark I had left on the world.

Shouldn't it be me?

It didn't make any sense.  And for me, with the eternal just-figure-it-out lawyer mind, it had to make sense.  I felt like I could make it right by fixing him.  Patrick would be the miracle, I told myself.  I just had to do my part, which was to be his advocate, get him the very best medical treatment, and love him every step of the way.  It would be like my penance for all of the crappy things I had done in my life.  I repeatedly promised God that if he would make Patrick whole again, I would be as good of a person as he was.  Patrick would survive, and things would go back to normal.  

But he didn't.  He died. 

Beyond the normal grief of losing the love of my life, I was completely wrought with the shame of not doing my part.  I didn't "fix" him.  I thought of a million scenarios where things might have turned out differently.  Maybe if I had insisted that he have a CT scan or MRI at the hospital when he was diagnosed with vertigo, three months before the seizure that led to his GBM diagnosis... Maybe if I had gotten him to UCSF sooner... Maybe if I had found the right clinical trial...  Maybe if I had forced him to continue treatment when he decided he had had enough... maybe, maybe, maybe. 

I tortured myself with these "maybe's" for a long time.  The logical side of me knew that the real cause of Patrick's death was the catastrophically aggressive tumor, which I could have had nothing to do with causing.  But try talking logically to a person who is in the throes of grief and see how far it gets you.  All I knew was that the scales were not evened, and that I did not want to be left behind.  I wished that death would come find me and take me back to him.  I did not deserve to make it, if he didn't.  

It was not until much later that I realized there is no "good person" exception for life's tragedies.  There is no grand tally board keeping score, determining that if you just do the right things you will be immune from catastrophe.  I found tremendous solace in the book "When Bad Things Happen to Good People" by Rabbi Harold Kushner.  Kushner had lost his young son to a cruel disease and found himself struggling with his faith during the grieving process.  In an article describing the book, Kushner writes "God does not cause our misfortunes.  Some are caused by bad luck, some are caused by bad people, and some are simply an inevitable consequence of our being human and being mortal, living in a world of inflexible natural laws.  The painful things that happen to us are not punishments for our misbehavior, nor are they in any way part of some grand design on God's part.  Because the tragedy is not God's will, we need not feel hurt or betrayed by God when tragedy strikes.  We can turn to Him for help in overcoming it, precisely because we can tell ourselves that God is as outraged by it as we are." (Read the full article here.)

The notion that God was as upset by what happened to Patrick as I was helped me in extraordinary ways.  I could not do business with a God that allowed him to suffer while letting me walk free, or worse, caused his suffering.  Instead, I could work with a God that grieved with me, and wanted to help me survive my own pain.  This may be offensive to people who live by the platitude of "Everything happens for a reason," but it worked for me.  I don't actually believe everything happens for a reason, or at least a good one.  Sometimes, shitty things happen to the best possible human beings.  This has been one of the most important lessons for me, and one that has gradually lifted the weight of feeling both responsible for Patrick's death and guilty for still being here.

Just like there is no grand tally for the living, there is no score being kept on how well you grieve.  It is not true that finding moments of happiness means you are a bad person, or that you did not truly love the one you've lost.  Some of the worst pain of my grieving has come immediately after enjoying myself,  when the guilt is so thick that it feels like it is dripping from my pores.  It comes from that same place the "maybe's" live, and it isn't helping anyone, or making my score higher.  And, newsflash to self: being miserable will not bring Patrick back.  

Earlier this week I drove up to the Bay Area, both where I grew up and where my love story with Patrick took place.  I had been avoiding the area of town where Patrick and I lived, got married, and where he died, ever since I had moved out.  Every time I had gone near it I would be overwhelmed by massive anxiety which more than once developed into a full-blown panic attack.  This avoidant behavior is typical for PTSD, and I was not interested in tempting fate.  But, throughout the four-hour drive, I kept getting the distinct feeling that I needed to go to the place we were married.  I tried ignoring it, but it got stronger and stronger the closer I got.  Since I have been trying to practice following my intuition in the course of my healing, I decided to heed the call, even though I was so afraid of what would happen.

As I entered the driveway of the apartment complex, I looked straight at the bridge over the pond where we held our wedding.  The weeping willow tree which served as our backdrop was as brilliantly green as it was that beautiful day in 2015.  I parked my car and slowly walked the pathway onto the bridge, where I stopped.  I closed my eyes, struck by a wave of memories, but there was no panic.  I remembered the look on Patrick's face when he saw me on that bridge that day.  I remembered looking out at our family and friends as we vowed to love each other forever.  I felt pulled to keep walking, to visit the home where we said goodbye.  I stood outside the door and stared, my breath catching in my throat.  I sat on the stoop and closed my eyes again.  I remembered it all.  Laughing and running hand-in-hand to the car.  Excitedly hurrying to the apartment at the end of the workday because I could not wait to see him.  Watching him pull up in his fancy new BMW which he assured me was not the result of a mid-life crisis.  And later, pushing him outside in the wheelchair once he was no longer able to walk to make sure he got some fresh air every day. Bathing him.  Feeding him.  Holding him as the life left him.  Loving him, loving us. 

In that moment, I felt Patrick's presence as strongly as I have since he's been gone.  I felt us.  And then, a soothing but firm voice said, "Okay Lisa.  It's done.  It's over now.  You're going to be okay."

I was taken aback by the significance of the moment.  I gathered myself and I stood.  As I walked away, I felt lighter than I had in years, still choking back tears.  I got in the car and one the songs I used to sing to Patrick when he was sick was playing on the radio.  I got to an appointment and when I walked in, another of our songs echoed through the waiting room.  There were endless reminders that day, releasing me gently back on my own.

I know that Patrick wants me to be happy.  He has given me permission to let go of my guilt and to build whatever kind of life brings me joy and meaning.  I now have my own permission.  And it's time for me to live.