Scary Conversations

hourglass

Death and dying. Not the topic most people would choose to spend their Saturday discussing but that is precisely how I spent yesterday. I had the opportunity to attend a conference on palliative care at Sacred Heart University. Attendees including students and working professionals from across several disciplines including doctors, nurses, social workers, physical therapists, occupational therapists, speech pathologists, and hospital chaplains as well as caretakers and family members from the community. What struck me most was that one of the biggest obstacles to obtaining palliative care for patients is fear. In the medical community, there is fear that referring a patient for palliative care means giving up and that “it’s too soon” – an attitude which often means patients suffer needlessly. For families, there is a fear that the suggestion of palliative care means death is imminent, which is often not the case. While education can dispel the myth that palliative care is the same thing as hospice care (it’s not), I’m not quite so confident that it can easily dispel the fear.

In a breakout group that focused on the spiritual aspect of making end-of-life health care choices, the same theme came up over and over. Families are terrified by the prospect of talking about death, whether it’s at the beginning of a serious decline in health or when death is staring them in the face. In some cases, families will do anything to keep a patient alive, despite knowing that death is inevitable. Some families want to extend life as long as possible,  holding out for a full physical healing miracle to happen. Their prayer can become so frantic that it is less about a relationship with God and more of a magic ritual. In such cases, families cannot seem to accept that the miracle may come in the form of a peaceful death. People who believe so deeply in a God who heals seem to struggle when it comes to believing in a God who is waiting to welcome their loved ones who will be released from their illness through death.

After listening to the war stories told by several of the chaplains and social workers, each one of them questioning how we change a culture that is so hung up on death avoidance, one of the young nursing students spoke up. She said that she’s of Finnish descent and in their culture, death is accepted as a unique part of life. Death is talked about and embraced as part of life from childhood. No one tries to hide from it or avoid it. People talk about their final wishes with family, including young children. She went on to say that her grandmother had called her last year to let her know that she had taken a woodworking class with another family member. The grandmother had designed and built her own casket and she wanted to make sure everyone in the family knew where it was being stored so when the time came, she could be buried in it. This is clearly a lady who is at peace with the reality that she will die one day.

I have to admit, as I listened to that story, the image that popped into my head almost immediately was of the third brother in the Tale of the Three Brothers from Harry Potter and the Deathly Hallows.  (If you’ve never seen it you can watch the short clip here.)

The third brother didn’t see death a power to be wielded or as something to be conquered. Rather, he lived his life well, knowing that death was inevitable, and when the time came, he greeted death as an old friend.

If we truly believe in the God we say we believe in, the God of everlasting life, isn’t that the way we should live? Let’s be honest here, death is inevitable for every single one of us. Wouldn’t it make more sense to talk about it? Rather than kicking and fighting death all the way to grave, wouldn’t it be better to acknowledge that death will come? Wouldn’t it simply be sensible to plan for the care we wish to receive to keep us comfortable and to maintain the best quality of life for as long as possible, while knowing that quality of life is not about extending life as long as medically possible. Admittedly, it’s much harder when illness strikes a young person, but knowing that death comes for every single one of us, why are we so afraid to accept it, to embrace it, and to talk about it?

As tends to happen with a really good conference, the questions asked raised more questions to take home and ponder for awhile. The biggest question on everyone’s mind was: How do we change the culture? One point that every professional and every speaker drove home was the same one: We need to start talking about these things. We need to help people understand what end-of-life care looks like before they get to that point. And in order to do that, we need to meet people where they are, which for many is stuck in a fear of death and dying. I think, for many, ultimately the fear of death is not so much a fear of the end of life as it is a fear of what comes next. And for Christians, what comes next is a face-to-face with God.

At the end of the day, I went home and, in classic introvert fashion, changed into pajamas, brewed a good strong cup of tea, and curled up with a new book. Eleven pages in, I came across this:

“I was afraid to make decisions for my life that would lead to greater happiness because I was afraid I’d get it wrong and end up on the wrong end of God’s wrath…

For those of us who get stuck in fear, we reach a point where indecision is no longer a plausible option if we want to truly live. The months and years of running from fear and abdication our full engagement with faith and life have a way of catching up to us. Eventually the walls close in. The trail ends. The sun dips below the horizon. We reach a point where we either have to close our eyes and spend the rest of our lives pretending we’re not dying or we need to embrace a bold authenticity about who we are and what we believe. We need to embrace life itself.”  [Benjamin Corey, Unafraid]

And it struck me that if we’re really going to meet people where they are when it comes to end-of-life care, we need to start talking about fear. Fear of illness. Fear of weakness. Fear of pain. Fear of dying. Fear of death itself. And especially, fear of what comes next. Because as Christians, we say we believe that God is love. And if we truly believe that, and if we truly believe that God walks with us through any illness, pain, suffering, and even dying, then we can trust that God will help us overcome our fear of talking about death. We can help our families to overcome their fears by talking about our own. And if we find that the fears people have are not just fears of dying but of God’s wrath, of hellfire and brimstone, then we need to start talking about that too. Because all of this fear is keeping people from living well and from dying well.

Of Life and Death

 

prince

Three deaths in ten days. That certainly got my attention. While none were family, each had touched a part of my life and it forced me to think about how often we impact the lives of those around us in ways we don’t always comprehend or even stop to consider. My son’s 16 year-old classmate who committed suicide, the 93 year-old priest I hadn’t seen in eighteen years, and the 57 year-old rockstar I knew only by his music, these three are the most unlikely combination and yet each touched my life in ways they never really knew.

I spent most of this semester trying to keep life and death confined to the five-page papers due in my ethics and bioethics classes. It’s not like I haven’t seen life and death up close and personal. I was raised being taught that death is merely a part of life, both are mystery and both are sacred. That makes losing someone I love an act of faith: a deeply held belief that God is good and a trust that God knows what God is doing even when it makes no sense to me. But as I listened to my much younger classmates talk about the death penalty, abortion, euthanasia and physician assisted suicide, I heard over and over that death is a right. And as a right, death is something that can be legislated, ruled, controlled, chosen, and even inflicted. There was no room left for faith.

“Jack Kevorkian is the Rosa Parks or Dr. King of our generation,” declared one nursing senior with reverence in her voice while several other chimed in their agreement. I heard business majors argue that terminal patients should be encouraged to commit suicide to free up beds for patients who might recover and patients diagnosed with dementia or Alzheimer’s should also consider suicide while they were still somewhat rational rather than become a burden to their families. Death has become cheap and sadly, in the process, so has life.

But what about life? And what about a right to life? Ah, yes that Right to Life movement sounds great on paper but, in the hands of a generation that has been more instilled with knowing their rights than with a deep faith, life has become just like any other right, meaning it can be legislated, ruled, controlled, chosen, and even revoked. “Violent criminals,” one young man vehemently argued, “have given up their right to life because of their choices. So now they should die and we as a society should say how and when they die.”

There was little reverence for the mystery or sanctity of life or of death. It worries me that these are the people who will be making policy decisions in years to come. But I had papers to write and these were topics to be considered and weighed and analyzed but best left impersonal. Funny how life and death refuse to remain impersonal for very long.

In the last ten days, it was the blog of teenage girl that reminded me of the incredible darkness I have had to overcome. It was a funeral for a priest that brought home to me that it was the kindness, gentleness, and openness of someone who touched into my life for the briefest of times that gave me the hope to overcome that darkness. And it was the death of a rockstar that shook me more than I would have thought possible which forced me to see that it was his pursuit of his passion that had given me the soundtrack for much of my teenage years; music that came before the darkness fell and still evokes memories of carefree days of untainted happiness and music that came later that touched into emotions that I had no language to express.

My life right this very moment would be different if not for any one of them. That’s the thing about life, just being alive is an act of faith: a deeply held belief that God is good and a trust that God knows what God is doing even when it makes no sense to me. And that gives me cause to wonder how my actions, my words, my writings, my pursuit of my passions, how all of those aspects of me being me could influence people I may never know. That is not a right. That is mystery and that is grace.

 

For Bella, Fr. Emidio Gregori, and Prince. Requiescat in pace.

 

Blind Ashes

I spent the last few days pulling together pictures to make a video scrapbook for my son Andrew’s fifteenth birthday. As I worked my way through the project, I realized I don’t have many photos from before 2007. When I walked away from my house and a bad marriage, I left nearly everything I owned behind, including box upon box of baby pictures. At the time, I simply did what needed to be done. To move in with Mom and Cathy, to sign away the house, to walk away with nothing but my name, to start rebuilding my life for myself and my boys: I’ve been told it was a bold and courageous thing to do. To my mind it was survival, plain and simple.

I tend to do that, to slip into survival mode. I come through hell, never look back and several years later I’m suddenly looking around wondering why I’m covered in ashes. Going through all those old pictures, I found a lot of ashes.

Every week during my pregnancy, my sister Kitty called me. She lived in Maryland and she was as excited as I was about my first baby. I mailed her copies of the ultrasound pictures and we ran through baby names. As my due date grew closer, our phone calls got longer and it wasn’t unusual for us to talk until the phone batteries would give out. The Wednesday before Mother’s Day was one of those nights. Kitty and I laughed about all the joys of late pregnancy, in particular having baby feet perpetually wedged in my ribcage. She told me that she was planning to come and stay with me for a few weeks after he was born. ‘I won’t come when he’s born,’ she said, ‘everybody comes then and you’ll have plenty of help. I’m going to come later, maybe for his Baptism and stay. That’s when you’ll need the most help.’ The phones started beeping in low-battery protest shortly after that. We said our I love you’s and hung up. I never talked to her again. On Saturday morning, Mom and Cathy knocked on my door at 7 AM. Kitty was gone. She’d died suddenly of a massive heart attack sometime Thursday night. The police found her on Friday. I literally felt my heart break. It was pain compounded when the doctors declared me too close to my due date to travel to the funeral. The day of her funeral, I was home screaming into a pillow on the living room floor, devastated by shock and grief.

Three weeks later Andrew was born. I refused the epidural. My tremendous fear of needles trumped the pain of labor and delivery. When he was born, the doctor laid him in my arms for only a moment. He had aspirated fluid and they wanted him rushed to NICU for observation. I was blind from the pain and while I heard his first cries, I couldn’t see him. Then they whisked him away. Two hours later, I was feeling weaker rather than stronger and the doctor, fearing I was bleeding internally, knocked me out so she could do stitches if necessary. She told me to count backwards from ten. I got to ‘ni…’ and everything went black.

Then Kitty was there with me. ‘I told you I’d come,’ she told me. ‘Wait until you see him, Chris, he’s perfect! He had the biggest blue eyes.’

‘You bitch! You cheated! You saw him first!’ But I was glad she’d seen him. ‘He’s okay? They took him away.’

‘He’s fine. Daddy’s with him.’ Dad had died eleven years earlier but somehow I knew what she said was true. ‘He’s breathing beautifully. He’s so precious.’

We talked about other things too but before she left me, she promised she’d stay with us. Maybe it was nothing more than a drug induced dream but it didn’t feel like one. When I finally came to, several hours later, that rip in my heart wasn’t quite so raw. Once I was upstairs in my room, they brought Andrew to me. Sure enough he had the biggest, brightest blue eyes and he was wide awake.

As I’m working on the video and pulling together pictures, I can’t help but think how much my life has changed in the last fifteen years. The hopes and dreams I had as a new mom at 25 seem so very far way from the way life has turned out at 40. Andrew is heading off to high school in the fall and Eugene isn’t all that far behind him. It’s been in the back of my mind since I turned 40 that Kitty was only 43 and her son was only 17 when she died. I find myself more and more aware of what things I want to pass on to my sons. As I talk to guidance counselors and teachers, I have a growing realization that I’m more concerned with raising intelligent, kind, compassionate, spiritually grounded young men than I am about raising successful A students. That usually doesn’t translate well in parent-teacher conferences but then I’ve always been one to do things my own way.

Now with Andrew’s birthday looming and memories of Kitty lurking, I decided I needed to go out and get lost this morning. I filled up the gas tank and queued up some new music, Ruthie Foster’s Let It Burn to be precise. There’s nothing better then a little blues gospel on such a perfect day for a long winding drive through the Naugatuck Valley. As I drove, I passed many old overgrown cemeteries with the lively new spring grass having little respect for the forgotten and neglected memorials of those long dead. I couldn’t help but think about how much birth and death have intertwined in my life. Dad died on my birthday. His funeral was on Kitty’s birthday three days later. It was an odd bond that we shared as sisters. Then too, Kitty’s death will be forever linked to both Mother’s Day and to Andrew’s birthday. And yet, every year the calendar slap in the the face becomes less about what I’ve lost and more about what remains, namely the love and guidance of my father and my big sister.

Years ago, my friend John told me, that having experienced neither in his immediate family, he considered me fortunate to have known so intimately the two greatest miracles of life: birth and death. I couldn’t, or perhaps wouldn’t, see it at the time. I know now that he was right all long. I just needed to rub the ashes out of my eyes.

Mary Margaret ‘Kitty’ Pelfrey 20130601-165719.jpg