NEW: A collection of tweets from Frankl's followers.
CEDAR FALLS, Iowa --- It had been more than three years since Sara Frankl was well enough to leave her condominium.
It had been even longer since she was able to enjoy trips into the great outdoors. For years her only forays outside her home's four walls were for visits to the doctor or pharmacist.
But that never stopped her from living.
In the years, days and hours leading up to her death Saturday night, Frankl, 38, shared her story and inspired thousands of others through her online presence.
"Sara, when she started blogging, thought that maybe it would be a way to give back, to do something to help someone," said Steve Frankl, Sara's older brother. "She was humble, though. She thought that maybe God had given her this disease for a reason. She always thought if she didn't have the disease she might have been tied up in a career, but maybe God had a different calling for her, to take what she knows in life and help others. This was a passion for her."
Frankl had ankylosing spondylitis. A form of arthritis, it primarily affects the spine and causes inflammation of the spinal joints which can lead to severe and chronic pain. AS can also cause inflammation, pain and stiffness in the shoulders, hips, ribs, heels and other small joints. The lungs, eyes and heart can also be affected. She also had leucopenia; something as simple as a cough for a healthy person could turn into pneumonia in Sara's body.
Sara Frankl started her blog in May 2008. Less than one month later she wrote:
My life now, to put it bluntly, is painful.
If I'm having a good day it means my pain is moderately high at best, and I've showered and gotten around my house without having to give myself a pep talk first. I have someone who gets me groceries once a week and another person who cleans my condo every other week. A year ago I was able to drive myself periodically to Walgreen's for short little errands, but it's been a long time since that was an easy trip. I don't count out that I will be able to do that again, but it's not in my reality right now.
Her online following grew quickly. She would comment on a blog and others would follow the link back to find out more about the girl called Gitz. Shannon Hayward of Knoxville, Tenn., was one of the many online friends Sara made.
"I have a chronic disease, too," said Hayward, who has lupus. "Most people who have chronic illnesses don't talk about it. I was just so impressed with the way she put it out there."
Their friendship blossomed through email, eventually leading to nearly daily phone calls or Skype sessions. Hayward's daughters would join in on the fun, chatting with "Aunt" Sara and showing off their latest dance routines. They took a small Flip video recorder everywhere, and each night Hayward would upload the videos to send to Sara.
"She was able to be with us everywhere," she said. "It's amazing what technology did for our friendship."
Last Christmas the Hayward family traveled to Iowa to spend time with Sara.
"She was so excited because Santa finally got to come to her house. She didn't get to have kids, so she borrowed mine," Hayward said.
When Sara was too weak to entertain, they moved to her bed and watched home movies.
"She shined the whole day, no matter how tired she was, even in the midst of feeling so crummy. I'm so thankful we had that Christmas with her."
Stories like that abound on the Internet, where Sara maintained her blog, Facebook and Twitter accounts and was a regular contributor at (in)courage, a blogging community for women. A small group of (in)courage bloggers recently traveled to Hilton Head, S.C., for a get-together. Sara couldn't make the trip, but that didn't stop her from joining the festivities. The women used Skype to connect with Sara. They even turned the computer toward the water so she could see and hear the waves crashing on the beach.
"She felt she lived a wonderful life. She had zero regrets. She hadn't been outside her condo in three years, but she felt she led the most full life of anybody in existence," Steve Frankl said. "... She had friends in countries all over the world that she never met in person, and they opened up a world to her where she had exposure to people I haven't had the opportunity to meet in my normal world of going back and forth to work."
When it mattered most those friends were the first ones to step up and help. In July 2010 Sara's father died unexpectedly. An online friend boarded a plane for Iowa and stayed with Sara. Despite being bedridden Sara was able to participate in the receiving line and view the funeral via Skype.
Candy Steele lives only a few miles from Sara's front door, but it took a chance encounter on a Tennessee pastor's blog to bring the two together. They talked online and on the phone, but it wasn't until Sara needed an after-hours prescription filled that the two finally met face-to-face.
Yep, I totally made her do me a favor the first time we were meeting in person. Yep, that really drove me nuts. I kind of thought I'd have her over for dinner or something before I started bossing her around, but I guess she's initiated now. :)
Steele didn't mind. She knew Sara would only ask if she truly needed help and the payback would come tenfold.
"Her ability and her grace in loving people is amazing," Steele said in an interview just before Sara's death. "She just loves so much, and that says so much about her, not just as a Christian but as a person."
Just before Sara's death, Steele stopped by the condo unannounced to leave a single flower on Sara's window sill --- she couldn't have them inside. Steve Frankl saw Steele outside and ushered her into the home.
"We talked for a half hour that night, and in true Sara fashion she asked me about my granddaughter. I feel so fortunate to have been able to spend that time with her," Steele said.
Later that night Steele returned with a small group of friends for a candlelight vigil. Sara smiled and waved from inside while those outside sang in her honor.
The vigil stretched through the blogosphere, where Gitz's followers joined together on Twitter using the hashtag "#choosejoy" to find each other. The tweets continued in the following days as her online friends and family checked in for updates and shared their memories. They Tweeted about her. They blogged about her. Some even had Sara's "Choose Joy" mantra inked on their body in a font designed from Sara's own handwriting.
"Sara always gave without expecting anything in return. She gave and gave while she was physically able," Steve said. "And when she could no longer physically give, the return manifested in an unbelievable way."