Advocacy, activism, and becoming our own heroes

To disclose or not to disclose: why I sometimes hate labels

For the first time in my life I’m writing a blog post that I am dreading even as I type. As I sit here thinking about the topic on my mind I’d rather get up and do ANYTHING than finish this post. I forge on as an exercise in self discipline. I’ve had labels, privacy, and disclosure on my mind for the past couple of weeks. It’s interesting to think that after jealously guarding my privacy about limitations that have been a part of my life since a the Big Bang, a spinal cord injury in 1985, I’ve decided to haul out the Americans with Disabilities Act to enforce my rights for the first time ever. Once again, as he has been in the past, Hank the Tank has been the catalyst for my contemplation. This time on the fine art of labeling ourselves. […]

Childhood hints at the Aspergers label

As I described in yesterday’s post, I recently came to understand that I have lived with undiagnosed Aspergers Syndrome for 51 years. One of the first things people in the Autism community ask, especially as so many of us are arriving at the diagnosis as adults, is “Were you diagnosed or did you self-diagnose?” […]

By | March 30th, 2014|Patient Empowerment, The Body as Storyteller|1 Comment

What’s in a label?

This post was prompted by a recently discovered personal “label” after a half century of living without it.  I’m not a huge fan of labels – whether for my fellow human beings or for myself. And yet sometimes they’re extremely helpful, even necessary. When it comes to my health I’ve experienced that time after time when I could identify what was causing symptoms or dis-ease in my life I could rather quickly get better. So I’ve […]

By | March 29th, 2014|Patient Empowerment, The Body as Storyteller|3 Comments

When tragedy strikes

Anyone who is familiar with the popular music festival SXSW knows that tragedy struck my community this week. Not only is SXSW a city-wide celebration, I’ve participated professionally – both on the interactive side as a subject matter expert, and as the “momager” of an emerging hip hop artist who is performing this year. So this hurt hits close to home. This sad event comes right on the heels of an awful case for one of my patient advocacy clients. […]

A New Story: Why medical and wellness?

There's a medical renaissance sweeping the country. The practice of medicine is being redefined. Self-care and personal responsibility for outcomes are more important than ever. [...]

By | September 1st, 2013|Patient Empowerment, Peacock Omnimedia|0 Comments

The importance of telling our stories: raising the Patient Voice

I’ve decided to declare it patient advocacy month for White Horse Medicine! Continuing on the thread of my last blog on embracing our scars I want to celebrate some of the amazing patient advocate connections I’ve made in my efforts over the past few months to launch an innovative new patient-centered clinical model of care with Doctor Julie. One of the first things we undertook was to attend together a Harvard Medical School […]

I am Scar Clan

I recently ran into a great brand on Twitter and immediately ordered a tee shirt from them. RockScar Love was founded to “celebrate sexy scars, the lessons they teach us and the strength they create.” In this mission we are totally aligned. White Horse Medicine does much the same. I love the idea of celebrating scars. Celebrating them is not the same as […]

White medicine horse to meet Old Spice Man at Circuit of the Americas

In celebration of the conclusion of the V8 Supercars Austin 400, the spectacular international Arabian breeding stallion Nebras Al Rayyan will be participating in a media event and promotional photo shoot at the Circuit of The Americas from 12:30 – 1:00PM on Monday, May 20, 2013. […]

LIVESTRONG Challenge 2010 report: lessons learned on the road

It was a really special part of my cycling year to finally ride my first LIVESTRONG Challenge this past weekend after having to sit out last year and settle for photographing the event. This year I was able to ride thinking about the wonderful people in my life who had tragically been affected by cancer.  Every mile of the 45 miles that I rode was ridden thinking about each of them. Laura, Buddy, and Helen, three dear friends lost to cancer, were memorialized […]

By | October 26th, 2010|Healthy Lifestyle, Patient Empowerment|10 Comments

The choice between surviving and thriving: we all have it

If you keep telling the same small story you’ll keep getting the same small life.    –  Jean Houston Every once in a blue moon someone comes along that we know has crossed our path for a reason. One of the recent additions to my own roster of these kind of people – those that I hold in such high esteem I consider them chosen family members – is Nicolette Maroulis. Nico and I met recently while I was working […]

By | July 31st, 2010|Healthy Lifestyle, Patient Empowerment|15 Comments