Last September, in an act of desperation, I met with a career adviser named Len. I laid out the timeline of my life: born in 1984, graduating high school in 2002, marrying my high school sweetheart in 2003, graduating from Indiana University with an art degree in 2008, surviving a sudden cardiac arrest, being diagnosed with Long QT Syndrome, and getting an implantable cardioverter defibrillator (ICD) in 2009, getting my short term memory back and my first ICD shock in 2010, participating in peer support, fundraising, and public outreach in 2011, my first solo art exhibition, and a 5000 mile road trip where I met other members of the Long QT Facebook group I belong to in 2012.
After I had finished, Len looked at me and said, “I don’t think you need my help figuring out what you want to do. Keep telling your story and it will all fall into place.” So, I left that meeting, more confused than ever, completely flabbergasted that this man who was supposed to help me figure out where to go from here simply told me to keep on truckin’. When I returned home, my husband asked how my meeting went, and I said, “I’m supposed to be a professional inspiration. Have you seen any job postings for that in the paper?”
I was an ePatient before I knew that term. After my sudden cardiac arrest, as soon as I was capable, I set about educating myself on my condition. Attempting to understand cardiac repolarization, ion channels, genetics, and ICD technology was quite the task for someone with an art education. I started with the Wiki page and on patient-friendly sites like The Mayo Clinic, Googling terms I didn't understand.
After many months of this, I progressed to articles from medical journals. I picked up the terminology and began to wrap my head around how this sudden death syndrome stuff works. I learned the facts of my story, of which I have absolutely no memory. I learned to understand my ICD, both through my own research and from asking lots of questions at my appointments and by contacting my cardiac electrophysiologist through e-mail. I am very fortunate to have a doctor who has been so receptive to me being so actively involved in my care.
I became an ePatient because I had no other choice. I may have a sudden death syndrome, but I am planning on living to be 107, at least. So, if I intended on living another 80+ years, I had to learn how to LIVE with this. I did not want to be a scared and confused heart patient, poked and prodded and operated on with no understanding why. I had to learn to turn this genetic defect that predisposes me to sudden cardiac death into a source of strength. I had to empower myself, and along the way, I discovered I have a knack at empowering others.
Recently, I began a collection of paintings based on heart data from other patients, and registered to run a half marathon with another woman who has Long QT and an ICD. Through social media, I have met so many others living with the same or similar conditions. With them, I have kept up with current knowledge, went on adventures, and faced fears. With them, I have celebrated accomplishments and mourned losses. I have heard their stories; their hope, their disappointment, their worries, their anger, their gratitude, and their thirst for knowledge. But above all, I have witnessed their overwhelming commitment to life. It has been such an incredible honor to hear these stories and to tell some of them on canvas.
I hope to learn how I can best utilize my passion and strengths to further the ePatient movement. I have been relentless in finding the silver lining in my experience, and I managed to pull myself up by learning about my condition and treatment, being actively involved in my care, and helping others do the same thing. So, professional inspiration? Nah. Just a girl immersed in the world of sudden death who is hoping to make this absurd reality a little easier for the people living it.