I Am…Paying Attention
Today we are celebrating someone who has been at the heart of Smart Patients for 14 years. There aren't enough words to describe how we value Robin, so we will simply say this:
Smart Patients is better because she is in it every day, without fail.
The Toolshed: How Robin Became Robin
Robin has always been the one in her family who could read a journal article and remember the right detail months or years later. The one with what she calls an aptitude for understanding science, research, and putting it all together in ways others could understand it. Long before her husband Luch had cancer, she was the person his family came to when something medical needed digging into.
Luch (Lusindo), Robin, & their son Roberto (1994)
Then November 1988 came. Luch was diagnosed with clear cell kidney cancer. The prognosis was a couple of months.
What followed was nearly ten years. Surgeries, recurrences, medical adventures, the slow accumulation of knowledge that comes from sitting alongside someone you love through everything cancer brings. Robin helped him live nearly ten years instead of two months. He died peacefully in hospice in August 1998.
She came out the other side carrying something specific. It's like a big toolshed full of items collected from different places, never quite knowing in advance which one will be the right one until the moment arrives. Some of the tools came from her years as an editor. Some came from books and journals she'd been reading her whole life. Many came from her years with Luch.
She was still the person she'd always been…but now she had a calling. She volunteered for years at ACOR (the Association of Cancer Online Resources). Then, a little over 14 years ago, an old friend who'd been the founder of ACOR co-founded Smart Patients. When the new platform was ready, Robin was invited to join in the most fitting role imaginable: the person whose sole job was to serve the members. Her ACOR group was the first to move here.
Continuing her daily work of giving away what she'd learned, she's written nearly 53,000 posts for Smart Patients. By the time you read this, it's already higher.
"I have the opportunity to be authoritative and fun," she says. "I like to comment, and in this environment I am appreciated versus being seen as a busybody."
There is a scientific mind at work in those 53,000 posts. There is also something else. In her quiet way, Robin is a spiritual person.
"Coincidence," she says, "is how God remains anonymous."
She sees serendipitous occurrences. She pays attention to insouciant or startling thoughts. She likes getting chills when something lands exactly right.
She will sometimes post something and afterwards wonder why she said it, only to find out later it was exactly what someone needed to hear. She reads something, sets it down, and finds it's useful the next day or week or month when someone asks the right question. She has the rigor of the researcher and the openness of someone who believes that everything is a miracle. She holds both at once.
"As all those dealing personally with cancer know," she says, "you need a sense of humor to survive. You need a sense of the absurd and the miraculous along with the willingness to find evidence and seize opportunity."
When we celebrated her fourteenth anniversary recently, members paid tribute: "You are like an anchor in a storm when things are rough."
Robin responded to all of it with one line and an emoji.
"You're making me smile and blush at the same time. "
She is still at her keyboard. Still paying attention. Still keeping her mind open to signs others might miss. Still finding the exact right thing to say to someone she's never met, because she has been in that same living room before.
A toolshed full of science, serendipity, humor, and hard-won wisdom. Fourteen years. Nearly 53,000 posts. And counting.
"Follow your bliss," she says, quoting Joseph Campbell.
She has been following hers all along.