Grief in the Raw

We’re all only one phone call away from a life altering experience that could change our lives forever.  I was at work when I received mine on August 12, 2008 at 12:40 p.m.  My husband was on his way to the emergency room with our 18 year old son Ben, who had collapsed at work.

Aside from a few minor symptoms in the previous weeks, Ben was otherwise a healthy, strong, athletic young man as the captain of the senior boy’s volleyball team.  He had played eighteen holes of golf with his dad three days earlier.  And hadn’t he just ridden his bike to work that morning?  Now standing in the chemotherapy wing, my husband and I were told that there was some erratic cell behavior with the prospect of leukemia.

While my world came to a crashing halt, the world around me accelerated as blood transfusions were initiated, medication was administered, and plans were made to get Ben to the nearest cancer care treatment facility ASAP.  The next day began a month’s worth of in-hospital procedures to begin what was to be a two-and-a-half year treatment plan for ALL (Acute Lymphoblastic Leukemia). 

Ben was put into a category all his own also having rare translocation of cells, putting him into a high risk category.  This meant it was highly unlikely Ben would go into remission, and if he did go into remission, he would very likely have a relapse.

We thanked God Ben went into remission one week shy of the completion of the induction phase of treatment.  But by the six month marker, Ben had spent half his days in the hospital dealing with one complication after another, including three weeks over Christmas and New Year’s that he didn’t even remember.

On March 27, 2009, Ben underwent a bone marrow transplant.  Then the unthinkable happened. Just two weeks before the transplant was scheduled, he relapsed, lessening his chances of survival.  For the second time on our journey the world stood still.  

Soon after, Ben had yet another relapse that led to one more month of in-hospital treatment.  Unfortunately, this round of chemo was unsuccessful in achieving remission, but with this news came our biggest reality check yet ─ Ben had days, maybe weeks, to live.  He was given a night to go home and decide between one of two options: 1) forget about any more treatment and spend the rest of his days in the hospital palliative care to keep him comfortable, or 2) go through with one final round of chemotherapy.  This was an experimental chemo, unfamiliar even to our medical team, giving him a very small percentile of achieving remission. 

It was a decision that wasn’t easy to make, but concluding a small percentage was still better than none, Ben, in typical Ben-like fashion, opted to take the chemo route.  It was a valiant attempt, but was unsuccessful.  After having spent two more months in the hospital, Ben decided he wanted to spend his last days in the comfort of his own bed, surrounded by the sights and sounds of home.  Our last days with Ben allowed him to finish well the fight he had so bravely fought.  Benjamin David Elliott was promoted to his heavenly home on August 19, 2009 at 12:35 a.m., one year and a week after his diagnosis. 

We are sad beyond words with the loss of our son and feel his life with us was far too short.  But the impact of his life and the Christ-like attitude he carried to his death have been far reaching.  A message he shared with our church family only ten days before he died has been said to be “the best sermon ever heard.”  It can be viewed on YouTube (enter Ben Elliott, Stratford).      

Many, including complete strangers, joined our journey of faith through a Facebook page, “The Ben Ripple.”  It soon became a venue for people to not only enter into the life of our family but also reap some “BENefits” of their own as they related it to their own lives.

One thing that came out of our journey was a GriefShare group.  One of the exercises encouraged us to write a letter to family and friends to express what our current state of grief was like and to inform them of what they could expect of us through this time.  I shared mine, and afterward the consensus was that I should share my letter beyond the class in case someone out there might be struggling to understand the effects of grief.  

The letter is entitled “My Grief in the Raw.”

Dear Family and Friends,

I thank you for your love and support throughout Ben’s illness and subsequent death.  It means so much to me knowing you’ve carried me and my family to Jesus over and over again on your knees in prayer. 

It’s hard to imagine that it’s been seven months since Ben changed addresses from his temporal home to his eternal home.  It seems at times that it was just yesterday that he was running through the door on his way out again.  And hence, it’s still hard to believe that he is now gone and that there will no longer be memories that include him.

I know that it must be so painful for you to watch me in pain.  I realize you may be at a loss for words or feel inadequate to reach into my pain.  No doubt there are times when you feel awkward around me as I shed tears or at other times when I seem unresponsive to your attempts to somehow make me feel better.   I thank you for your patience as in my raw state of grief I may respond harshly to you.  I apologize if I in any way have caused offense as I’ve worked through my grief.  

I’m tired and easily distracted.   I don’t have a lot of social energy right now.   In fact, I often feel like a caged animal looking for a quick escape route in social settings.  I am sad, but I’m not looking for anyone to make me happy.  I am broken, but I’m not looking for anyone to fix me.  I am not looking for answers.  I am not looking for sympathy.  I need people to be okay with my sadness, realizing that my tears are bringing healing.  I need people to be more interested in entering into my pain than trying to get me to the other side of it.

As much as I appreciate the loving motive behind them, assurances that “One day it’ll all make sense” or “One day you’ll feel better” only serve to project a future I can’t make sense of yet.  Words such as “Ben’s in a better place” or “Ben isn’t suffering any longer” don’t bring the comfort that I’m seeking but rather simply remind me of what I already know.  Although they hold elements of truth, words intended to help me “look at the bright side” make me feel that somehow I’m living “on the dark side.”  Words that encourage me to “think of all I have to be thankful for,” usually beginning with “Well, at least...” only suit to minimize my pain and imply that I’m not thankful for what I do have.  Words cheapen my pain.  Answers to questions I’m not asking frustrate me.

Be assured that there have been moments where there is a vaguely recognizable sense of relief. I like how Ben’s girlfriend described it.  She said, “It’s like coming up for air.  It’s like most of the time we’re in the ocean and every once in a while we come up and take a quick breath of air before being submerged again.”  That revelation in and of itself was refreshing!  Because, yes, grief can sometimes swallow you whole and suck the breath out of you!

I think all of us concerned have done well to “go on living life” even when it hurts.  Just as God’s grace sustained me and my family throughout Ben’s illness, I know He will continue to do so now in our grief.  God has strengthened us all to “do the next thing,” whatever that has been along the way.  It might amount to something as simple as taking a walk or having an extra cup of tea or just hanging together as a family.  God is comforting me with His quiet presence.  He is holding my hand as He’s guiding my steps.  He is entering into my pain rather than seeking to get me over it.   My pain is what God is using to reach deep into the recesses of my heart where He alone can speak powerful words of truth and comfort.  I believe He is using my pain for His glory as I share my journey with others.

I don't know what “being okay” will look like for me personally.  But I do know that I will not always feel as I do now.  I know that laughter and joy will emerge again someday.  And I do know that I will survive and eventually recover.  I cling to that knowledge, even though there are times when I don't feel it.  And I trust that I will be a better person, becoming more like Jesus as a result.

Please pray that I would come to see meaning in my loss and that God would continue to teach me valuable lessons in my pain.  Please feel free to talk about Ben and don’t be afraid of our tears when you do.  We long to hear mention of his name.  We want to know that his life and his death are still making an impact for the Kingdom of God.  We want to know that he’s not forgotten.  Most of the time, given the right time and place, we are bursting to share our all-consuming thoughts with anyone who will give ear.

Thank you for caring about me and my family.  Thank you for listening to me with no words. Thank you for validating my pain by simply crying with me.  Thank you for understanding when I've seemed distant or aloof or disengaged or uninterested in your life.  Thank you for giving me the necessary time and space to work through my grief.  Thank you for not giving up on me.

And finally, “Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God” (2 Cor. 1:3-4).

Lisa (Mom)