“I finally got a shower.” The blonde woman with the damp hair on the screen in front of me laughed. “It’s been a couple days.” I commiserated. I understood. With the craziness of this Kickstarter campaign, I had to think for a moment and we laughed together as I hesitantly noted that I thought I had taken one the day before. I never imagined I would be the person who got so wrapped up in a project I couldn't remembered if I had showered or eaten. "It's a little crazy," I smiled. “This is the good kind of crazy though,” Colleen English said. “The kind that is meaningful.”
And I think it is.
We met on a rainy February day earlier this year in San Diego where we were both attending the Storyline conference. We immediately bonded over the fact that she had been raised in Scottsdale, AZ. I currently live there and neither of us quite fit the mold. Rebels. It's our thing.
Colleen’s life is already pretty busy with her children, one of them being a special needs child with Rett Syndrome. A little over a year ago, she was struggling to find time for rest. “I had forgotten how to be refreshed. I was away with a girlfriend for a spa weekend and I couldn’t slow down. My mind was going in a million directions.” She knew that her life held more than the busy she was filling it with but if she couldn’t slow down for rest, how would she find time for anything else?
So, Colleen became intentional about learning how to find moments of quiet and reflection in the midst of a hectic life. She started an art journal and picked watercoloring back up. Every three weeks she made time for some kind of time away to pamper herself. She began a practice of daily gratitude, “even on the darkest days when things are the most frustrating or the crappiest, it's important to be looking for the good in it." Each of these things she scheduled into her days and she began to find the rest her body, mind, and soul craved.
During this time, her family heard of a clinical trial for Rett Syndrome which they could apply for. “We were standing at physical therapy one day and I was just babbling on to the therapist as I usually do. I heard myself say, ‘Claire does so good when we’re consistent in our therapy appointments. I mean if we’re consistent in appointments we don’t really need to do the trial.’ They stopped in what they were doing and stared at me. I realized I hadn't mentioned the trial to them before.” She pauses in the telling of this story with a fierce look on her face. “I could see it in their eyes. Both of them. They were thinking, ‘We would rather do the trial than lead a safe life.’ And so we did.”
They applied for the trial and were accepted. Millions had been raised for the research. Only thirty families were needed to make the data count, but the families had to travel to Boston for the treatments. The financial strain to do this was too much for most of them who were already raising a special needs child, so the trial was having difficulty finding families who could participate even if accepted.
This is where intentionally rested, rebel hearted Colleen’s passion met her greatest need.
In one of the online communities that she and I both are a part of, she had just watched a group of people pull together to create a useful and amazing project in a very short time. Money had been raised and the power of community had worked practical miracles. Colleen was inspired. She knew if the trial was going to happen, she had to help these families be a part of it.
Barely a year ago, The Rettland Foundation was born. They initially raised $3000 and began helping families with a first night in a hotel or a plane ticket. One small thing. A boost to say, "you can do this thing. We are here. You are not alone." Community. It evolved into something more. Families in these situations need support. There are things you can’t talk about, like side effects or outcomes. There are things you need to talk about, like the constant travel, stress, and how it is all changing your life. Moderated support groups were formed out of the connections that were made through the foundation to ensure that the clinical trials wouldn’t be affected by the discussions but that the families would still have a healthy outlet.
“I didn’t know how we were going to raise money. But sometimes it just happened,” Colleen said. She told me of this moment when there was a specific need of $2500. Her and Claire were on the plane to Boston for another treatment and she was working on her laptop. The man in the seat next to her struck up conversation and happened to look over her shoulder. When she landed and settled in, she found that he had donated exactly $2500. She hadn’t told him about the need, but the provision occurred. “And it does,” she told me, as tears streamed down both of our faces.
The first trial finished faster because of the work that The Rettland Foundation was able to do in supporting the families involved in it. Colleen’s dream mutinied and is changing the face of a disease. As we were finishing our conversation, she said the most blunt and profound thing.
“People don't get it. We've lost friends, many friends. You will. People don't always know what to do or say when you're pursuing your dream. They're more comfortable with ordinary. I didn't do this to get friends. I did this because I'm awesome. That sounds conceited but it's not, because YOU'RE AWESOME TOO. Look, we fly on an AIRPLANE from California to Boston to cure Rett Syndrome. Do you know how many dreamers it takes and took to make that happen? So, why can't my dream happen? WHY CAN’T YOURS?.”
You have a choice. You can live a safe life or you can fly. It will be hard. As Colleen said, you will lose friends. People won’t understand. They will think you are crazy. But you can change the world. She is. Why not you? And why not now?
Mutiny Well, Dreamer.