Engage with Grace this Thanksgiving

For the past few years I have joined in the annual Thanksgiving blog rally, Engage with Grace: One Slide Project. This year, however, Engage with Grace holds special meaning and remembrance for me.  

On November 21, our community of Concord, Massachusetts lost an incredible teacher and mentor, David Prifti.  David, a gifted artist who taught photography at Concord-Carlisle High School, had the unique quality of connecting with each student to make them feel like they were the most amazing, talented kid in the world.  But more than that, David taught his students how to navigate life with grace, dignity, hope and humor.  

During the past two and a half years, as David lived with the diagnosis of pancreatic cancer, he allowed us all to become his students as he shared his journey through his widely read blog, Prifti News. Last month he shared with his blog readers his decision to enter hospice care and determine as best he could that the end of his life would be filled with the same beauty, grace and gentleness that had always been central to his life. One of the many gifts that David left with us is the recognition of the importance of communicating with others, expressing our wishes for the end of life.  

And so, this Thanksgiving, I dedicate my participation in Engage with Grace to David Prifti, in gratitude for teaching us all the meaning of grace, hope and peace.  

May your Thanksgiving be filled with mindful moments and shared conversations with those you love.
Pam


Engage with Grace 2011: Occupy With Grace

Once again, this Thanksgiving we are grateful to all the people who keep this mission alive day after day: to ensure that each and every one of us understands, communicates, and has honored their end of life wishes.

Seems almost more fitting than usual this year – the year of making change happen. 2011 gave us the Arab Spring – people on the ground using social media to organize a real political revolution. And now – love it or hate it – it’s the Occupy Wall Street movement that’s got people talking.

Smart people (like our good friend Susannah Fox) have made the point that unlike those political and economic movements, our mission isn’t an issue we need to raise our fists about…it’s an issue we have the luxury of being able to hold hands about.
It’s a mission that’s driven by all the personal stories we’ve heard of people who’ve seen their loved ones suffer unnecessarily at the end of their lives.
It’s driven by that ripping-off-the-band-aid feeling of relief you get when you’ve finally broached the subject of end of life wishes with your family, free from the burden of just not knowing what they’d want for themselves, and knowing you could advocate for these wishes if your loved one weren’t able to speak up for themselves.
And it’s driven by knowing that this is a conversation that needs to happen early, and often. One of the greatest gifts you can give the ones you love is making sure you’re all on the same page. In the words of the amazing Atul Gawande – you only die once! Die the way you want. Make sure your loved ones get that same gift. And there is a way to engage in this topic with grace…

Here are the five questions – read them, consider them, answer them (you can securely save your answers the Engage with Grace site, www.engagewithgrace.org), share your answers with your loved ones. It doesn’t matter what your answers are, it just matters that you know them for yourself, and for your loved ones. And they for you.

We all know the power of a group that decides to assemble. In fact, we recently spent an amazing couple days with the members of the Coalition to Transform Advanced Care -- or C-TAC – working together to channel so much of the extraordinary work that organizations are already doing to improve the quality of care for our country’s sickest and most vulnerable.

Noted journalist Eleanor Clift gave an amazing talk – finding a way to weave humor and joy into her telling of the story she shared in this Health Affairs article. She elegantly sums up (as only she can) the reason that we have this blog rally ever y year:

“For too many physicians, that conversation is hard to have, and families, too, are reluctant to initiate a discussion about what Mom or Dad might want until they’re in a crisis, which isn’t the best time to make these kinds of decisions. Ideally, that conversation should begin at the kitchen table with family members, rather than in a doctor’s office.”

It’s a conversation you need to have wherever and whenever you can – and the more people you can rope into it, the better!! Make this conversation a part of your Thanksgiving weekend – there will be a right moment – you just might not realize how right it was until you begin the conversation.

This is a time to be inspired, informed…to tackle our challenges in real, substantive, and scalable ways. Participating in this blog rally is just one small – yet huge – way that we can each keep that fire burning in our bellies, long after the turkey dinner is gone.

Wishing you and yours a happy and healthy holiday season. Let’s Engage with Grace together.

Choosing to Keep the Heart Open

Grief is universal.  As human beings we are fortunate that we can feel the emotion of love so strongly, but tightly bound to this intense love is the incredible grief we feel when one we love dies.  Some of you may know that my son, Nick, died of a rare form of cancer in 2001 when he was just 14 years old.  I was both humbled and honored when I was recently asked to deliver a speech at the 20th annual Pediatric Memorial Service at Massachusetts General Hospital to honor the children who had died and the parents, siblings, relatives, friends, and healthcare providers who they left behind.  A large part of my professional life is spent as a public speaker, so I am comfortable expressing myself before a large audience.  However, as you can imagine, this speech didn't come easily to me. As I worked on what I wanted to say to the audience gathered at Massachusetts General Hospital, it became clear that perhaps these words needed to travel further, so I am posting them here, in my blog, in hopes that someone who may find comfort in them will find them here.  It is with compassion, peace and hope that I offer these words to each of you ~ Pam

  

Sunday, November 6, 2011 ~ Massachusetts General Hospital, Boston, MA

"The only whole heart is a broken one...it lets the light in" ~Rabbi David Wolpe

There are few choices afforded to us in how to survive the loss of a child.  Well meaning friends, relatives and professionals may advise us "not to let this tragedy define who we are", but I will have to respectfully disagree with this advice.  The tragedy of losing a child is a life changing event like no other: We are confronted with not only the loss of one we deeply love, but with the loss of our future as we had envisioned.  We are shaken to the very core of our existence and essence. Yes, this event will define us for the rest of our lives whether we want it to or not.

When our loss is new, it is unfamiliar and terrifying in its intensity.  I vividly remember waking up the morning after Nick died and being absolutely amazed and incredulous that the sun had the audacity to rise, that the school bus continued on its scheduled route down my street, that  people went to the grocery store, commuted to work and  that the mail was delivered...the outside world continued to function as if nothing had occurred.  It was a surreal scene.  Because for me it was as if a nuclear bomb had been detonated.  The world as I had known it had been destroyed with the death of my son.  My world now was defined as a new normal even though I wished desperately for the old normal to return. 

Rabbi and author, David Wolpe, aptly describes the feeling of new loss in this way  "When we experience a loss, a hole opens up inside of us. It is almost as if the loss itself plows right through us, leaving us gasping for air" and we bleed profusely through this opening. During the early days, months and years after our loss, we focus on how to slow down this  hemorrhage, this continuous emptying of grief.  But then something begins to change, very, very slowly; the immediate agony subsides. Around the edges of that opening, things begin to heal and scar tissue begins to form.  This is the point at which we can choose how the tragedy of our loss will continue to define our lives...we can choose  to allow the scar tissue to continue to form and thicken, closing the hole within us -- hardening us to the world with the unfairness and unjustness of our loss; or we can choose to allow the hole to remain open, allowing not only the stream of grief to flow out but permitting light, hope and meaning to enter.  I have chosen to allow the hole within me to remain open and this is one of the gifts my son has given me. 

Rabbi Wolpe suggests that "The only whole heart is a broken one, it lets the light shine in."  Allowing the hole to remain open, has allowed me to be a more compassionate person to others and myself, perhaps a bit less judgmental and more empathetic than I was in my old normal.  Keeping the hole open has made it easier for me to prioritize what really matters and not what I think should matter -- it now OK to say no to mundane tasks and yes to things that feed my soul.  I do not fear many things now -- after all the worst has happened to me, so what do I have to be fearful of now?  And most important, by keeping the hole open, continuing to allow the grief out and the light in, I am able to hold Nick and the meaning of his life close.  

So, perhaps I have what the professionals call a "maladaptive coping strategy", but I embrace the notion that yes, I have let this tragedy define me in a way I never imaged would be possible; by allowing my heart to remain broken, and open, it is, in my new normal, whole once more.

I wish each of you peace, hope, and healing on your journeys.