Uncertainty in illness

My first brush with uncertainty rooted in illness (that I can remember) occurred when I was ten years old and facing my first open heart surgery. It wasn’t until my sociology of health and illness courses in undergrad, around age 21, that I learned there were people, words and theories that talked about what I experience/d yet could not name.

Departure gate wisdom

a photo of me smiling widely from a bridge overlooking the Inn River in the Austrian Tyrol.

More than anything – I yearned to embark on this journey on my own terms. I was ecstatic at the prospect of mapping out my own course, even if that included joining a 12 day coach tour, because.. baby steps. I was tired of waiting. Waiting for the right time. Waiting for other people to go with me. Waiting until I felt more confident to set off on my own. I was ready to take a chance and hopefully prove to others and more importantly, to myself, that I could do this.

Ending a career, but saving a life

“Wow!  You’re so tall, you must play basketball!” For those readers who were also vertically gifted growing up, you may have experienced similar remarks from new acquaintances, extended family members, random people at the grocery store.. I would usually say thank you and laugh it off.  How I really wanted to respond was something like, … Continue reading Ending a career, but saving a life

My take on Marfan Syndrome

Marfan syndrome (MFS) is an example of a chronic illness with acute episodic periods.  What makes it a chronic illness is its long lasting nature, which means instead of "curing it" you "manage it".  However, there are times when a person with MFS may need immediate or emergency care that if not received can result … Continue reading My take on Marfan Syndrome