Tag: healthcare

Finding courage

Omaha Beach, France

“Courage is not the absence of fear, but rather the judgement that something else is more important than fear.”

Ambrose Hollingworth Redmoon

I stood with my family above Omaha Beach this summer. From the safe distance of 75 years away, we learned about the 160,000 soldiers who landed on a 50-mile stretch of heavily guarded coast on June 6, 1944: the day often referred to as “the longest day,” one of the largest military actions in history.

Standing on the actual terrain in the wind and rain helped me take in just how little cover and safety there was on for these men. What made it possible for them to get through that day—to take a step off the landing craft, onto the beach, into the gunfire? Surely they were not fearless, but yet they did what they felt they needed to do in the face of great danger.

Since that trip I’ve been thinking about courage. Of being afraid but doing what needs to be done anyway.

The threats I face in my comfortable life are nothing compared to theirs of course. Yet I’m often afraid. As a parent of a child with multiple disabilities who needs lots of support, I can find so many things to be afraid of. (I wrote about this fear I called the Terror of Scarcity back in 2011.) In my work trying to help improve healthcare, I am often afraid to raise my hand or open my mouth. In my relationships, I’m afraid to say that I need help, that I’m sorry and even “I love you.”

It’s easy to feel ashamed of feeling afraid, and we rarely talk about it. But fear is like sneezing or the hiccups. It just arises naturally even if we don’t like to talk about it. (If you don’t believe me, a web search for fear quotes reveals that we’ve been trying to psych ourselves up as a species for a long time.)

But less natural and automatic is courage. Courage is sometimes used as a synonym for fearlessness, but for me, it means facing a challenge in spite of fear. The root of the word courage is cor, the Latin word for heart, and suggests that when we bring our heart into the situation, we find the power to act despite the fear. When I listen to my heart tell me what is more important to me than avoiding an immediate threat, the courage to act can suddenly appear.

Poet Mary Oliver captures this so well in The Journey: “One day you finally knew
/ what you had to do, and began, / though the voices around you / kept shouting
their bad advice—/ though the whole house/ began to tremble /
and you felt the old tug / at your ankles.”

Listening to our hearts isn’t always easy. Luckily there are many people and organizations who help people do just that. I’ve found guidance in several places:

The Center for Courage and Renewal helps leaders bring integrity and trust into their organizations and communities. From them, I learned that it’s easier for me to live wholeheartedly (i.e. with courage) when I’m in the company of others who are seeking to do the same. Through their programs and books I’ve found my way back to my voice and my sense of adventure.

RAIN is a mindfulness technique that helps me with any emotion as it arises. Its four steps are Recognize what’s going on, Allow the feeling to be there, Investigate the feeling with curiosity and Non-identification or not equating who you are with your thoughts or emotions. Tara Brach has written about it shares talks about it frequently on her website. She is a wonderful teacher.

Vulnerability researcher Brené Brown shares the link between vulnerability and courage in much of her work, including her now famous TED talk and her recent Netflix special called The Call to Courage. She’s shifted the way we talk about fear and courage.

As I write this, there’s part of me wondering if I’ll actually share it publicly. It’s scary to admit I’m scared. But something tells me that you feel fear, too. And that just like me, you have things that are more important than fear.

What scares you? And what’s bigger than your fear?

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After spending years coordinating healthcare and other services for my son, I now lead and support initiatives in which patients and their families, clinicians and policy makers collaborate to create better health and care. I welcome you to join in an on-going conversation about healing health care by subscribing to this blog, in which I write regularly about the experience of living in a complex special needs family and working to create and support change, or by connecting on Twitter or LinkedIn.

Durga Tool 7: Getting into the driver’s seat

Here’s another in my toolbox series of techniques that inspire me to live with joy, compassion and courage, as inspired by the Hindu goddess Durga  – my nominee for patron saint of special needs parents. 

In my 10 years as a parent of a child with significant medical and developmental challenges, I had significant “a-ha” change in my level of consciousness just a couple of years ago. So significant that it almost deserves a personal equivalent to the B.C. and A.D. of our Western calendar. That’s how big a deal it feels, even now.

Before this shift, I was naïve, in denial and passive. After this shift, I was empowered and engaged. It was as if after years of being a passenger in my son’s care, when doctors, early intervention professionals and teachers had been driving, I decided to take the wheel.

So what happened? Health care workers would say that I got activated. Educational experts would say I got engaged. Family leaders might say I became an advocate.

I would say that I finally understood that when it came to my son’s life, the buck stopped with me. I understood that no matter how respectful or knowledgeable the experts were, they couldn’t connect all the dots of my son’s needs. They didn’t have the knowledge or resources to. To ask them to was unrealistic and even unfair. And the healthcare and education systems that I assumed were always looking out for the best for us…well, if feels almost foolish now to say that I did think things worked that way.

Suddenly, I got it. And that realization pushed me to gain so many new skills, so much knowledge and confidence. Some might call it grace. It sure feels like it.

I don’t have any answers as to why I was lucky enough to want to get behind the wheel. I do have a lot of empathy for those who don’t. It probably depends on many things—in my own case, my own personal and cultural views on both authority and expertise, a lack of access to a peer who had been through it before, challenges coping with fear and anxiety, anger at feeling that life had dealt me a bad hand, but to name a few. Mostly, I think, it was a bone-deep sense of overwhelm, a false assumption that there were too many questions, too few answers, too much bad news and not enough me to go around.

Since then, I’ve become passionate and curious about what makes one person “wake up” to the idea that they are in the driver’s seat of their own and their child’s well-being, and another person assume that the professionals caring for them can know what they need better than they know themselves. If I could wish for one single miraculous insight for others, it would probably be this acceptance of the absolute need for personal responsibility. Without this, nothing else will get done.

In the health care world, professionals talk about family or patient “readiness,” or our openness and ability to make a change.  Before we “wake up” or become what they call an activated, engaged patient, we must spend time getting ready for that change. Maybe it’s not a switch that gets flipped, but a series of awakenings, of small changes that slowly builds our confidence in our own ability to lead.

Yesterday I got the chance to observe an intervention at a waiting room in a health clinic designed by an organization called the Right Question Institute. A medical student, armed with a simple pamphlet and a friendly way about her, approached patients waiting to see their doctors and coached them through a brief activity that helped them prepare three well worded questions for their doctor.

Is this the grace I have been wishing for others? Perhaps so. After so many years of trying to support others to get in the driver’s seat by enthusiastically telling them they could do it, I watched a few folks learn how.

When did you figure out that you needed to be in the driver’s seat? Did you always know? How to you encourage others to take charge?

See you out there on the highway…zoom zoom!