It's funny how someone sends you the right thing at the right time, so often. I bit off more than I can possibly chew this week, without a doubt. Still struggling with C. diff, and still not able to spend a lot of time on the computer, etc, I agreed to a leadership position with the Scleroderma Foundation, Greater San Diego Chapter. I am trying to arrange our Education Day on June 18 (please come!!!) and have great aspirations and dreams of success. These were somewhat dampened at my visit with Dr. Furst this week when he cautioned me that starting a new event like this is going to take time. Expect 30 people or so, he said, and I cringed inside. All this work for 30 people? Wouldn't that feel like failure?
And then my wonderful friend, Sarah, sent out a little link on Facebook to a story about a man who started a nonprofit in Rhode Island meant to foster creativity. An audience member at a recent talk asked him what the best way is to go about that. And he answered:
So much of our existence is mediated. We're getting billions of messages every day telling us what we should wear, what we should eat, what we should drive, how we should look, who we should date, you know, whatever, and you come to AS220 and someone starts playing a guitar solo, and they fail.
And they start again.
That's human.
We could all identify with that.
It's amazing.
Okay?
And it's empowering to us to have that experience and make that connection. As opposed to being fed perfection. Something we cannot identify with. That's humbling - not humbling, it's, it's, it's, demoralizing -- you know? Because we can never live up to those expectations. So we keep buying more, to try to achieve these expectations that are false.
So I think [the answer is] creating environments where people feel safe to fail, and other people have the opportunity to experience that.
So, it's given me pause, these messages that I have been gently getting this week. I can't always expect perfection and will try to be satisfied with progress, slow and steady. And I will try to see my many failures in this new light.
I think there are far too many people in SD with scleroderma for that low turnout if you get the word out a couple months ahead. We did one in Phoenix (first one ever) and had a turnaway crowd. Dr. Furst was there so I'm puzzled at his response. You know we will help you with anything we can. Go get 'em! Hugs, Bonnie
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ReplyDeleteThought provoking post, Holly. As a society, we really do need to re-define "failure". As one of my favorite songs says, "failure only meant you didn't try." I know how many people you are touching... and even if only a handful of people show up at the meeting, I am sure that meeting you will be life-altering for those who do come. Brian's favorite quote, from Maya Angelou, “I've learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” And you make people feel awesome.
ReplyDeleteI love Brian's quote and I love Maya Angelou! Thanks!
ReplyDeleteEvery day you get up, make strives, and find something to smile at is a success! Count me as #31. lisa
ReplyDeleteCongratulations Holly on all that you are doing and your courage is an awesome exemple for us.
ReplyDeleteIf your meeting is on June 18th I shall try to get my ticket back to France on the 19th instead of the 15th as I had planned.
Love
Marie-Claude
Congratulations on your recovery from scleroderma with Dr Burts non myeloblaytive stem cell transplant. Being a physician it gave you the opportunity to make an informed decision on which regiment to choose. Others in the scleroderma community need to have the education so they also can have this option to have their lives given back to them. Dr Burt should be given the chance to address the scleroderma community at the national patient conference. Why are only the scot trial Drs allowed to have a voice within the scleroderma foundation when so many others need this chance?
ReplyDeleteThanks so much for your comment about the SCOT and ASSIST trials. I don't know the answer to your question, but I am speaking about my experience at the Southern California Scleroderma Foundation Education Day in March, and hope to have Dr. Burt speak at our San Diego Education Day in 2012--he has already agreed! :) So, the word may start to get out and patients should know their options.
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