The Death of Normalcy: Hugh Herr’s Mission

Photo above: Hugh Herr

An experience in our life that can appear at first to be “tragic” or “negative” can often be the impetus that leads us to transformation and perhaps even down a path that changes the world and improves the lives of millions.

Such is the case of MIT Professor and double amputee Hugh Herr, whose story captivated me when i saw it recently featured on a CNN Medical/Innovation segment.

An avid adventurer and mountain climber, Hugh Herr had a “tragic accident” while in his twenties on a mountain climbing adventure.

During what was supposed to be a one day climb, he got caught in a blizzard and when the rescue party reached him 4 days later, frostbite cost him the loss of both his legs.

Hugh Herr went on to create “Bionics,” an interplay of science and design that has revolutionized the field of prosthetics. Bionics are replacements for “broken body parts” using the latest generation of robotics that not only seamlessly integrate with the body, but outperforms the natural body part.

Professor Herr believes that the “death of normalcy” includes ridding the world of “disability” for we no longer look upon a person as “disabled” with technological advances allowing the broken body part to be replaced or augmented with superior body parts.

I believe that one of the reasons I was so drawn to this story is the fact that I had an older brother who was born seriously physically “disabled.” His “disability” was so severe he grew up in a special facility with other “seriously disabled” children.

Visiting him when I was a child forced me at a very early age to simultaneously feel tremendous gratitude that I simply had a “normally” functioning body and a loving home to grow up in, while getting a powerful lesson in how our culture’s “labels” and “judgements” have such profound implications we too rarely examine.

When I would see people make fun of, or whisper about a person who was physically or intellectually “disabled,” it was like a kick in the gut, for that could be my brother, who I knew had a beautiful mind and spirit.

We have come a long way since the 1950’s when my brother was born and our culture “hid away” children who were born this way.

Eunice Kennedy Shriver was a great hero of mine, not for creating games for those with intellectual “disabilities”, but for showing the world how truly “able” and lovable these human beings are.

Yet I know we still have far to go in challenging so many of our culturally held judgements on what is “beautiful” — on race, religion, sexual preference, and even on what is good and what is bad — and so many other ways we exhibit hate, ignorance or fear.

We need to move beyond these limiting definitions and views of ourselves and others. The Death of Normalcy asks us to constantly reexamine all our values and judgements, and recognize that in the end our only limitations are the boundaries of our collective imagination.

If The Death of Normalcy leads to a more loving, accepting, interconnected and limitless world, then I say, R.I.P. Normalcy!

God does, indeed, work in mysterious ways.

Let’s Create a State Within Ourselves

Last night, I had the pleasure of speaking at the launch event for the California Arts Council’s “Create a State” Arts Plate campaign here in Los Angeles.

California is second-to-last in in the United States in arts education funding per capita, and the Arts Plate is the primary source of California’s public arts funding.

Our goal is to get one million Arts Plates on the road, which will generate $40 million annually for arts education and local arts programs for children, schools and communities.

Having a chance to mingle with so many artistic thinkers (including the legendary architect Frank Gehry!) inspired me and got me thinking.

All of of us have the ability to “create a state” within — a state of hope, of inspiration, of love, of courage, of compassion and of possibility.

I refer to this state as The Open Field — a state beyond expectations, beyond fear, beyond judgments, beyond limitations, and beyond definitions.

It’s hard work (the work of our lives, really) but all of us must create this kind of state within ourselves.

I believe that before we can change the world, we must first change our world.

I also had an opportunity to introduce Azure Antoinette, a brilliant poet and and breath-taking spoken word artist. As I say in my remarks, Azure creates a state of awe in me every time I hear her.

Please watch the video below and then join the conversation in the comments section.

Tell us: What state is within you? What are the things in your life, and the experiences you’ve had, that create states of inspiration, courage, compassion, love and possibility within you?

And, if you happen to live in the great state of California, be sure to buy an Arts Plate and tell all your friends about it.

Together, we can empower beautiful, creative and imaginitive young minds to dream and create.

Calling All Alzheimer’s Caregivers: Share Your Story

I invite you to tune in tonight (2/18) for an Alzheimer’s special titled, Glen Campbell Fights Alzheimer’s.

Hosted by Shepard Smith, the hourlong special airs at 10pm EST / 7pm PST on Fox News. It will also re-air next Sunday, February 26 at 9pm EST / 6pm PST.

The piece will focus on the public figures who, through their living example and advocacy work, have raised much needed awareness of Alzheimer’s Disease.

As I was preparing for the interview, it dawned on me: this will be my first appearance on Fox News. I am thrilled that Fox News is taking on Alzheimer’s and I was honored that they asked me to participate. If we are going to defeat this devastating disease, we all need to come together, move beyond political definitions, discuss it openly, and navigate a new path to end it.

In the interview, I spoke about how this “mind-blowing” disease impacts families, what I’ve attempted to accomplish with my own advocacy work, and how important it is for caregivers to have a supportive community with which to share their stories and find practical information and resources.

Since launched just over a year ago, we have featured many powerful caregiver stories. We’ve all been touched by the journeys of two wives — Karen Henley and Angie Clarkson — who are dealing with the enormous challenges of Young Onset Alzheimer’s.

We’ve been inspired by the experiences of a self-described ‘sandwich mom’ who is raising her young daughter as well as caring for her ailing mother. We’ve been empowered by the ongoing wisdom and guidance of an Alzheimer’s caregiving couple, Ellen and Daniel Potts, and were inspired by Leeza Gibbon’s moving love letter to caregivers.

We’ve published articles on Alzheimer’s caregiving strategies and an ongoing series on Senior Care. We’ve showcased a lovely poem written to help explain Alzheimer’s to children, and featured essays on the power of love and the heart-wrenching pain of watching a loved one disappear before our eyes.

I hope these stories have moved you, given you comfort in times of need, and made you realize that you are not alone. Each of these writers stepped out of their comfort zones and moved beyond their personal pain to pass on their experiences and wisdom and life lessons to others.

For this reason, I believe it is an act of great courage to share one’s story with the world. So, in that same spirit, I invite any Alzheimer’s caregiver who may be reading this to share your story with this community.

In the comments section below, tell us about the challenges you’ve faced as an Alzheimer’s caregiver and how you’ve managed to overcome some of them. How has Alzheimer’s disease impacted your life and your family? Who in your life has stepped up to help you? What websites or organizations have you turned to for guidance? How have you found the strength to keep going?

We are always on the lookout for new perspectives and voices on this issue and regular contributors to write about their caregiving experience.

Valentine’s Day Message – What Barriers Have You Built Up Within Yourself?

Rumi is one of my favorite poets and philosophers. Reading his words always inspires me to move beyond my comfort zone, beyond my fears, and beyond my understanding.

I came across this thought-provoking message recently and thought it was worth sharing this week for Valentine’s Day. I find it to be such a true and profound insight.

I think all of us, at some point in our lives, build up barriers in response to (and to protect ourselves from) being disappointed, hurt, rejected or excluded. These internal barriers become a part of us over time and we can forget they are even there.

They typically stay in place much longer than we need them and they can hold us back from letting the fullness of love into our lives.

Join the conversation below: Do you agree or disagree with Rumi’s message? What barriers do you think you have built up within yourself? How have they affected your life?

Happy Valentine’s Day,

Message for the New Year: Gather Yourselves

Happy New Year to all you Architects of Change. I hope your holidays were a time of joy, gratitude and awe.

A dear friend sent me the following “Message from the Hopi Elders” on the last day of this year. It’s one of my favorites and I wanted to share it with you. It hits home every time I read it. In fact, I have a framed copy of it in my office next to Mary Oliver’s wonderful poem, The Journey.

Both are worth reading as we head into a new year, a new time, and a new journey. This Hopi message contains important questions that many of us already are — or will be — asking ourselves as we enter 2012. Think about these questions. Gather within and gather yourselves.

Join the conversation below: What are you looking forward to in the New Year? What are you doing? What are your relationships? Where is your water?


“A Message From the Hopi Elders,
You have been telling the people that this is the Eleventh Hour.
Now you must go back and tell the people that this is The Hour.
Here are the things that must be considered:
Where are you living?
What are you doing?
What are your relationships?
Are you in right relation?
Where is your water?
Know our garden.
It is time to speak your Truth.
Create your community.
Be good to each other.
And do not look outside yourself for the leader.
This could be a good time!
There is a river flowing now very fast.
It is so great and swift, that there are those who will be afraid.
They will try and hold onto the shore.
They will feel they are being torn apart and will suffer greatly.
Know the river has its destruction.
The elders say we must let go of the shore, push off into the middle of the river, keep our eyes open and our heads above the water.
And I say, see who is in there with you and celebrate.
At this time in history, we are to take nothing personally.
Least of all ourselves.
For the moment that we do, our spiritual growth and journey comes to a halt.
The time of the lone wolf is over.
Gather yourselves.
Banish the word “struggle” from your attitude and vocabulary.
All that we do now must be done in a sacred manner and celebration.
We are the ones we have been waiting for!”
–Oraibi, Arizona Hopi Nation


What’s At Stake At This Moment For You and Your Family?

I listened to President Obama’s speech about what’s at stake for our country in this “make or break moment” and it got me thinking…

What’s at stake at this moment for you and your family?

We have a crisis in this country. We have a poverty of the soul, a poverty of the spirit, and a poverty of the pocketbook.

Is there anything that can bring us together, any issue we can all gather around?

After all, we are the United States of America.

Did you have a chance to watch yesterday’s speech? If not, watch it below and join the conversation. I’d love to hear from you.

The Season Of Gathering

The holiday season has arrived. And I must say, Thanksgiving is my personal favorite. Why? That’s simple: it revolves around food, family, fun and great conversations!

I used to look forward to going home to Washington, DC to be with my parents. The football games, the walks in the park, the laughter and, yes, even some of our more high-pitched political discussions — I treasured it all.

For me, the holidays are about slowing down, being with my family and friends, and hearing what they are thinking about and reflecting on.

At the same time, I don’t have to remind anyone that the holidays can also be really stressful. We all have our own worries — about what to make, where to go, how to make it work for everyone.

As we approach this Thanksgiving week and the true beginning of the holiday season, let us gather together and empower each other with our stories.

Tell us: what is your favorite part of the holidays? Have any worries? What are you going to be talking about at your table this year? Do you have any family rules that keep conversations from getting out of control? Join the conversation.


Truly Funny: Operating Heavy Machinery

My friend sent me a hilarious email this morning about a mishap she had operating what she referred to as "heavy machinery" in her yard (See picture above).

The original email was sent to her children, but when she forwarded it to me, she noted that if she ever wrote a book about raising boys, this experience will fall in the chapter titled, It Sucks When They Leave Because the Moms Have to Learn How to Operate the Heavy Machinery.

This is what she sent me, word for word. Thankfully, she gave me permission to share it with you. It really cracked me up.

"This will be a lengthy email but I must set the scene in order for you to fully appreciate a simple household chore gone array. We woke up to find the downstairs furnace not working. It was 30 degrees outside so a mini rage was developing. I was asked what my plans were for the day, and when I responded that I needed to go to Tysons Corner to pick up hardware for the bathroom, Dad said there was a sh*tload of work to do in the garden. So I said I would leave my chore for tomorrow and was happy to help with the gardening. Not sure why I offered to help considering my past years of lack of gardening help but I thought: how hard could it be? At least it's not post hole digging?. We proceeded outside and were met with the dripping gutter that hasn’t been fixed in the 3 years by our contractor. I try to distract Dad with “so what's the project for today." The plan is to move the plants from the front of the house where the deer are ravaging the garden to the back of the house, which is now protected by a BRAND NEW 12 foot CUSTOM iron fence. Did I mention custom? I'm now directed to back the Gator [Editorial note: this is a Gator] out of the garage which has me a little fearful as I've never driven the thing before. I do it VERY SLOWLY and am very proud of myself as I haven’t hit anything yet. The plants are dug up and loaded into the Gator and I'm told to go through the gate near the garage to take it to the back. OK, so here's the problem: I thought me and the gator would fit, but guess what? I've managed to decimate the 12 x12 ft CUSTOM Iron Fence that weighs over 100 pounds! Clean off the hinges! OMG…I should have just gone to Tysons Corner?

My friend ended her email to me saying that she bets there are "a million women out there with similar funny stories."

So, let's test out her theory. Do you have any true-ly funny stories like this? Have you ever tried to do something for the first time and taken on a task outside of your comfort zone only to have it end comically like this?

You can write your story in the comments section below. Let's bring some humor into each other's lives.

Trying to Achieve a ‘Balanced Life’ Always Makes Me Feel Off Balance. How About an Integrated Life?

I’ve been thinking lately about the idea of living a balanced life. Everybody I talk to seems to be struggling in their lives with this mythical thing called balance. It always just seems out of reach, particularly for women. Truthfully, I believe the whole concept sets us all up for failure.

Based on a friend’s suggestion, I’m going to forget about balance and try to lead what I’m referring to as an integrated life.

I hosted a barbecue recently where I had my kids and their friends, family friends, personal friends and professional friends all mingling together. It was wonderful having all those different ages, experiences and relationships melded together. It felt real. It felt right.

Like many of you, I get in the habit of putting aspects of my life (family, personal, professional) into compartments and then trying to attend to all of them equally, at different times. That kind of balance is impossible, so I thought: why not bring my whole wide world together more often? I’d prefer look at my life as a whole, not as segregated parts that I need to juggle or balance on some life seesaw. I think the pursuit of integration could bring us much more joy than the pursuit of balance.

What do you think about the idea of living an integrated life as opposed to a balanced life?

I’d love to hear your thoughts below. Join the conversation.


Got Me Thinking: The Power of Being Part of a Team

Last night, I hosted a “Team Maria” fundraiser for Best Buddies, an organization my brother Anthony founded in 1989 to create friendship, employment and leadership opportunities for people with intellectual and developmental disabilities.

Seeing my family, friends and colleagues at this beautiful event put a smile on my face. I was happy to be working with so many staunch advocates to further a great cause.

And it was beyond wonderful just having the “team” back together.

It got me thinking about the power of being part of a team.

A friend recently gave me a card with a picture of a group of friends on the cover. The card read: “Call it a tribe, a clan, a network; whatever it is, you need one.”

That’s true, isn’t it? It is a fundamental human desire to feel as if we belong — and are included — with people of like minds and like hearts.

Is being being part of a tribe or a team important to you?

What is your team — and where and how did you find it?

Join the conversation. Share your stories and life lessons below. Pass it on…