Earlier today I was informed that fellow congenital heart defect pal and blogger Steve of The Adventures of a Funky Heart passed away over the weekend.
Normally I don't talk about losing one of our own, because frankly, I don't get sad, I get smacky.
What I mean by that is sadness quickly gives way to anger and bitterness because death amongst those living with a congenital heart defect makes me want to punch somebody's lights out.
I think of all of the money being thrown at stupid shit like inane television, nonsensical, meaningless movies, bratty celebrities who drink and snort their lives away, and the big billionaires who cheat and lie and profit off of the hard work of others. I think about all of the money put into those wasteful endeavors rather than into medical research that could be used to develop technology and medical breakthroughs that would keep my friends still alive.
Steve was a ball of sunshine in the CHD community - he never involved himself in any of the lame-ass drama that various individuals thrived on; his dedication to the subject, history, progression and personal stories related to congenital heart defect was astounding. I honestly have never met a person who just lived, ate, drank and breathed this life as much as he did. And he loved it! Not being ill, of course, but he loved meeting people, being involved, getting to know everything and anything about congenital heart defects, and making sure prayers and good thoughts were sent to those in need.
He was a true Southern Gentleman as well - and his good-nature humor was always at the surface, with a joke, a silly pun or a positive message readily available. He called us "survivors" and "warriors" While I feel only slightly fit to the latter category, it was his strong, iron-clad-in-a-heart of gold belief that there is a place in heaven for everyone and that there would be a cure for congenital heart defect.
His most profound post, in my opinion, was one of his last:
A Cure for Heart Defects
In this post, he goes on to describe that hope is not enough to cure our congenital heart defects and that action must be taken.
POINT ONE: To find new medical and surgical options to increase the survivability of Congenital Heart Disease;
POINT TWO: To research the occurrences, causes, and possible prevention of Congenital Heart Disease;
POINT THREE: The reduction and elimination of mortality and disability associated with Congenital Heart Disease.
THE GOAL: To eradicate Congenital Heart Disease.
THE DEADLINE: November 29, 2024 – the 80th anniversary of the first Blalock-Taussig shunt.
I hope to meet many of you living with a CHD out there, reading this, at the Adults with a Congenital Heart Defect Association Conference in Los Angeles next April. I don't have the dedication, patients or guts to be as involved as Steve was - but I'm definitely ready to kick some ass.
I hope you are, too.