What Matters Now

We're a nonprofit offering free, private patient websites for families and friends come together for comfort, inspiration and support: www.WhatMattersNow.org. Our intention is to support people to live fully as they are experiencing serious illness, in dignity and comfort, surrounded by the people they love. Posts are by Vanessa (@vcb), one of our co-founders.

[sharingwhatmatters]

Reflecting on Death: NHDD and Boston

Today, April 16th, is National Healthcare Decisions Day (NHDD) in the United States, cleverly set for the day after Tax Day (since, as Ben Franklin said, “in this world nothing can be said to be certain, except death and taxes”). It’s a day that emphasizes the importance of advance care planning—talking about and documenting our wishes for end of life.

It’s also the day after the bombing at the Boston Marathon, and my country is reeling. As I reflect on NHDD, and as I open my heart with compassion for Boston, I am looking death in the eye.

There’s a quote attributed to Buddha that keeps coming to my mind:

Of all footprints, that of the elephant is supreme. Of all mindfulness meditations, that on death is supreme.

Contemplating Buddha’s analogy, an elephant’s footprint doesn’t actually matter more than that of a lark or any other creature; it just makes a much heavier imprint on the ground than all other footprints. Similarly, you could spend time talking about the end of life (as NHDD encourages you to, and as acts of violence force you to), or you could be talking about what to make for dinner. Talking about death has the power to create a much bigger impact on your life than most other conversations.

Reflecting on and talking about my death inspires me to open my heart more fully to my life, to the people I love, and to everyone I encounter. I do not know which moment will be my last, but I do know that I’d like that moment to be one of kindness, grace and gratitude. I want to die in a condition of ease, with a heart full of love from a life lived well.

Have you been thinking about death too? Have you shared your wishes with family? Have these conversations illuminated what qualities matter most to you in life?

[sharingwhatmatters]

Illness, Dying and the Internet

Last week Mashable posted How 1 Billion People Are Coping With Death and Facebook. Most of the article focuses on how we use Facebook after someone has died, but the opening paragraphs begin earlier, in a hospital:

“I think I’m going to go online,” said Cheryl, logging in to Facebook from her hospital bed.

She soon reconsidered, however. “I don’t know what to write: ‘Hey I almost died last night. What’s up with you guys?’”

Months later, Cheryl died from Hodgkin’s lymphoma.

There is so much to Cheryl’s wry comment.

Illness, recovery, dying and grief are some of the hardest things that we experience, and when we’re going through them, we need authentic support.

Some people successfully share their experiences of illness on Facebook and beyond (for example, the beautiful and inspiring Suleika Jaouad). But for many of us, expressing what’s really happening is really hard.

Why What Matters Now Exists

We created What Matters Now to offer one of the best features of the internet—the ability to easily connect with people who are dear to us—in a space that honors all aspects of illness: our vulnerability, pain, sadness, anger, desperation, deep reflection, bravery, forgiveness, joy, grief, gratitude, love, and transformation.

Joy and a Sense of Adventure

One of our users, Dave, invited me along for the ride of his final months of life via his What Matters Now site. It was extraordinary to witness.

Just when he was ready to settle into a happy retirement with his wife, kids and grand babies, Dave was diagnosed with an aggressive form of cancer and given a prognosis of a few months to live. His health declined quickly. He didn’t have energy for very many visits or phone calls, but he was still online. Dave used What Matters Now to share his reflections on his life and his experience of dying with his family and friends.

In those final months, people from throughout his lifetime came together on his site and poured out hundreds of beautiful, sincere, heartfelt messages to him. They shared fond and funny memories and photos, explained how much Dave meant in their lives, and expressed their love. From one another’s posts, they learned about different parts of Dave’s life, and knew how incredibly loved and supported he was.

Dave passed away peacefully at home with his family by his side. The day after he died, his wife Rebecca posted his final message to his website, as he’d asked her to. He said:

My hope is that my experience will help some of you deal with the inevitable. Somehow, during the last three months, I have found a lot of joy and sense of adventure in this process. It is a beautiful world.

Our Hope

Our hope is that we all find and share the joy and adventure in our lives—during times of health and during times of illness. May we all live, and die, knowing we are deeply loved.

The blow of losing someone dear to us cannot be taken away, but it can be softened by love, gratitude and community.

About What Matters Now

We are a nonprofit offering free personal websites for families and friends to come together for comfort, inspiration and support. Our intention is to support people to live fully as they are experiencing serious illness, in dignity and comfort, surrounded by the people they love. Please share www.WhatMattersNow.org.

[sharingwhatmatters]

A Life Lived Well: Strongly, Gently, Beautifully

Fukuda Sensei died yesterday. She was 99 years old, just two months shy of 100, and had received her 10th degree black belt in Judo at age 98. In my mind, she was the most accomplished martial artist of our time. Judo was her life, her love, her passion and her teacher. Fukuda Sensei’s motto, Tsuyoku, Yasashiku, Utsukushiku, translates to “Be Strong, Gentle and Beautiful in Mind, Body and Spirit.” They are words to live well by. Fukuda Sensei began her study of Judo in 1935 and continued teaching all the way to her death. Through 78 years of practice and sharing the way, she found mastery and a fundamental truth about life. A few years ago, as one of Fukuda Sensei's white belt students, I had the honor of participating in her annual Joshi Judo Camp, special training for women Judokas. One moment from camp remains emblazoned in my heart. With all the Judokas gathered round her, Sensei shared with us that very recently, after more than 75 years of study, she had finally understood the true meaning of Ju, “gentleness.” She spoke humbly and powerfully, crying tears of deep insight.

Okage sama de, Sensei. Thank you.