Wednesday, October 15, 2014

In the news...

Brittany Maynard’s recent news stories have made me physically ache.  I ache for the pain and anguish she is going through.  I have compassion for the fear she is facing. I am so sad that she feels the need to end her own life, but I also strongly feel that to understand her fear and her wishes is to validate her dignity and her life. Unless one has walked in her footsteps, how can we pass judgment on her decisions?

When Steve was first diagnosed with Stage 4 Gliobastoma Multiform he was given approximately 9-18 months to live.  We lived those 9-18 months waiting for the proverbial shoe to drop.  The physician side of Steve was keen and he knew better than anyone that his diagnosis was dire. In preparing me for the inevitable, Steve told me of one of his first medical lectures.  When told his prognosis was Glioblastoma, he said he vividly recalled sitting in a first year med school class and hearing the professor saying, “Stage 4 Glioblastoma, a death sentence.”

We lived on eggshells those first years.  Every scan, every follow-up appointment, we left stunned at our good fortune.  Steve’s response never changed, when told he was tumor free, would respond, “Are your serious?”  We lived in a dying state for over two years. We lived preparing for Steve’s death.  Steve would verse me in family, household and monetary matters. We tried to brace ourselves physically, emotionally, spiritually on all fronts, yet the scans kept coming back clear year after year. God had huge plans for Steve to fulfill before he left this earth, and all I can be is grateful that Steve was given this time.

It was around the end of year two that I finally hit the brakes and proclaimed no more talk of dying, we would be about living. Steve was reticent, perhaps feeling, if he wasn’t anticipating death, the tumor would certainly return. I was more adamant, and in the end he allowed me to have my way.  Death talk ended and life resumed.  

Steve often spoke of his last four years being the best of his entire life. We spent hours on end speaking of our time together, our love for one another, what we had brought to each other’s life. In those four plus years there was no stone left unturned. We were given the gift of time and we used it well, speaking our hearts and our souls to one another, discussing our joys and sorrows and fears. We arranged chairs on the Titanic, but they were our chairs and it was our Titanic.

I will be honest and admit we were both incredibly fearful of the reality of Steve’s actual death.  He was afraid of being trapped in a nonfunctioning body, unable to speak or move, fearful of being fully cognizant of the horror of living, trapped.  Can you even imagine such fear?  I lived with it, and I know what it is to love someone faced with that probability, but to say I understood his fears...I simply can’t comprehend how he did it. I, on the other hand was fearful of how I would take care of Steve.  How would I know his needs?  How would I physically help Steve through to the end? How could I emotionally watch the person I loved so deeply deconstruct?

We discussed our fears.  We talked about every scenario that might have happened.  Those were painful conversations, Steve was stoic and matter of fact, I would end most of those conversations with my head buried in this lap, crying as silently as possible and praying for God's mercy and strength.

I know Brittany Maynard is facing all of those same fears today, maybe even stronger fears, as she is so very young. There is a huge part of me that wants to run to her, wrap my arms around her and beg, plead her not to go through with ending her life in November.  There is also a part of me that remembers a conversation I had with Steve early on.  He asked me one evening if, ever the time came that he was completely incapacitated, could I ever consider helping him end his life? It was one of the most painful answers I ever gave him when I told him no.  As much as I loved Steve, as much as I valued his quality of life, I had to say there was nothing in me that could have positively answered his request.

If I could tell Brittany anything right now it would be that each of us who was given the gift of watching Steve die experienced the example of how to die with amazing honor and grace. There is some unspoken gift that is unwrapped when you are able to be a part of palliative care. It is exhausting, it is humbling and it is simply sharing the last of life with someone your greatly love who is soon to leave this world. 

I may be tainted because Steve said when he was first diagnosed that he had made a vow to himself, he was going to die well. Steve lived up to that vow and surpassed it with the Olympic gold. He taught everyone who he encountered how to live by dying with grace, dignity and humility and it was probably the finest gift he gave us. Steve taught us how to live well and he taught us how to die as he had lived.  To the very end, he took care of every need imaginable, he never complained, he never sunk into self pity.  Steve never gave up, and neither did we. We knew when God’s timing was perfect, and we each let go and allowed Steve’s gentle passing.

What would I say to Brittany Maynard if I could? I would say, we all have different paths to walk in this life. None of us walks the same path the same way. Our footprints leave different tracks and may lead us down other routes. All we can do is try to remain true to ourselves, true to our beliefs and to true those who love and care for us. 

What about those of us on the sidelines, what are we to do?  I believe the best gift we can give is to support, comfort and care for our dying loved one as they choose.  To care for them in a way that makes easing from this place to the next as gently as possible.

So to Brittany Maynard I say, I am praying that no matter what decision is made, our loving and almighty God will hold you with his right hand and lead you into his kingdom where you will be whole and healthy and free forever.

For what it’s worth,

Isaiah 41:13  "For I am the LORD your God, who takes hold of your right hand, who says to you, 'Don't be afraid. I'll help you."