Jamie Schanbaum: A Tough, But Great Act to Follow
By Sam Jackson, Photos by Alice Rabbit
“When I give advice to people who are down in the dumps, I say the only way you can make a change, is that it starts with you,” Jamie Schanbaum says. If anyone lives by their own words, it’s her.
Jamie was progressing through her college career at the University of Texas when she was waylaid by what she thought was the flu, but turned out to be an infection of the bloodstream known as meningococcal septicemia. As can be guessed from the name, it’s a cousin of meningitis, and as one expert pointed out, a patient with this can be healthy one day and toe-tagged the next. Thanks to treatment (which at first involved both dialysis and a ventilator), Schanbaum was able to stop the disease, but it cost all of her fingers and both legs from the knee down.
“Once the doctor told us that he would be planning to amputate officially, it was painfully emotional. I didn’t sob, but there was a consistent roll of tears coming down my face,” she says about the finality of it. But it turned out to be the smallest of prices to pay since the disease could have made her deaf, blind, or brain dead.
Regardless, the aftermath wasn’t much better. “When I woke up a couple of days after my surgery, I felt an immense amount of pain, without moving a muscle. It was painful, and I also couldn’t speak because I had tubes down my throat. My tears did all the talking. The next day or two, the hospital decided to do bedside, wound care for my new amputated legs – and I also had so much damage up to my thighs from the disease that most would consider me a burn victim. I came out with bandages on my hands and on my amputated legs, in a wheelchair weighing 80 pounds, and most of my hair fell out due to lack of protein levels.”
That on its own was rotten enough, but to Jamie’s frustration and sorrow, she later found out a simple vaccination might have prevented the disease from catching her. Since nobody was really pushing for students to get vaccinated, she, like many others, hadn’t had one.
“It changed my question ‘Why did this happen to me?’ to ‘Why does this have to keep happening to others?” she says. “If there is a way for people to not encounter all the pain I have endured by way of a vaccination, then everyone needs to know about it and hopefully become proactive in getting the vaccine.”
Jamie took that sentiment to the Texas Legislature and in 2009, the Jamie Schaunbaum Act was passed, making meningitis vaccines required for Texas college students living in dorms. She’s even impressed the infamous Senator Ted Cruz with her story because of the effort she put in to get this law passed and what the disease took her through – the rise of the anti-vaccination movement that’s tied to the rise in diseases that vaccination eradicated has irked Schaunbaum to no end.
“People have their reason for not vaccinating their children, but what they need to realize is that, that they’ve left the opportunity for their children to contract a disease and could possibly take their life,” she grouses. “Not only the children’s life, but they also left the opportunity for them to be carriers of the disease, and therefore, letting them be able to pass the disease to someone else, which can become fatal as well.”
It’s also fueled the “dream” that Jamie has of an act like hers eventually reaching the federal level, which could happen since President Obama’s own daughter also struggled with meningitis. As Capitol Hill continues to enforce her namesake Act, Schanbaum keeps on with her life, building it back to where it once was. One thing she was determined not to lose to the disease was her passion for riding bikes, so she and her coach, Sean Ahmadi, teamed up with Austin’s own Bicycle Sport Shop to put together a modified bike she could operate with her new hands and prosthetic limbs. Christening it Lady Maybellene, she often competes in events like the Paralympics and the Livestrong Challenge, or zooms about Austin on it whenever there’s free time.
Jamie and her mother also put together a nonprofit for meningitis patients, called the Joint Advocacy for Meningococcal Information and Education (JAMIE) in a fit of brilliance. As for the patients themselves? “It’s important to love yourself and believe in yourself. If you believe that you should stay in, then that’s the road you’ll end up taking. But if you believe that you should be a part of this great big world, then you shall! Make the difference, make the change, and stand up for yourself. Don’t let others bring you down, you are the biggest instrument and you are in control of bringing yourself up!” “This too shall pass,” she points out. “And it does.”