[Editor's note: This column originally ran on the blog for 42, where Timothy Scahill works as social director and account planner. It previews a benefit show for Scahill's fiancée, Lynden, that starts at 7 p.m. on Friday at The Waiting Room Lounge and features UUVVWWZ, Dim Light, Solid Goldberg, Dads and a silent auction. RSVP here.]
by Timothy Scahill
Last summer, during a trip to Austin, my fiancée felt a tiny bump on her back that hurt when she slept. She assumed it was just some mosquito bite she got while swimming or biking.
It all started with a headache and motion sickness. After she returned to Lincoln, she got horrible flu-like symptoms and was bedridden for a few days, unable to even stand. After that there were sinus infections, extreme fatigue, an overall feeling of misery/malaise, and fainting spells.
We ended up in the ER with a $10,000 bill to find out that “nothing was wrong.” Then, she followed up three times with a local Lincoln doctor who diagnosed her with high Epstein Barr levels and told her she had mono.
This added even more to our bills, and we still had no real clue what was about to come.
She was finally diagnosed with Lyme in November of 2011. Since then, we’ve discovered there is a cloud of controversy surrounding Lyme. The co-infections that accompany the disease aren’t often talked about, insurance companies and most doctors don’t recognize chronic Lyme as a disease, and the proper treatment for the disease has resulted in many doctors around the country getting disbarred.
The day-to-day battle began to quickly take its toll on both of us. My fiancée is a very private person, so at first we decided to keep the news of her diagnosis to ourselves and a select group of friends and family.
However, as we started reading more and more articles — an alarmingly high number of which touched on the widespread ignorance regarding Lyme – we decided to spread the word. I posted articles we found to Facebook, many of which resulted in some really strange reactions. It was clear to us at this time that we needed to tell people our story.
We gained a lot of momentum by educating our friends about Lyme through Facebook. I posted videos and articles about the disease, the controversy and how this coming summer will be very tick-heavy (ticks have been known to spread the disease). By the time I set-up a crowd-source account on GoFundMe, everyone in my social networks was educated about Lyme.
GoFundMe allowed us to tell the story of battling Lyme disease and the co-infection Babesia. The website made it easy to share our story, handle the money, update everyone on how close to our goal we were and let people who donated post to Facebook, which caused a gigantic network of friends to read and donate.
We had an overwhelming response in the first 12 hours. We reached our goal of $4,500 for medial bills and treatment for Lyme disease. 2,617 views, 470+ Likes, and 120 donations later, we now have a fighting chance of digging out of our financial hole.
From the bottom of our hearts, we would like to thank everyone for their support. There is nothing I can possibly say that could express the gratitude and love we feel at this moment. If it weren’t for online forums, my fiancée asking her doctor to test for Lyme, and the help and generosity of our friends and family we could’ve easily been ruined financially right as she was supposed to be starting her career in occupational therapy.
We shared our story and, with the assistance of Facebook and GoFundMe, asked for help. Our social networks — both online and off — supported us in a big way. For every dollar we raise over $5,000 we’re going to put 10% toward promotional materials educating the public about Lyme disease and prevention methods, including this infographic and a benefit concert we’re holding at the Waiting Room Lounge in Omaha, Neb., on Friday, July 13 starting at 7 p.m.
Timothy Scahill is a Hear Nebraska contributor. We at HN wish him and Lynden the very best.