Tuesday, July 24, 2012

Late to the Pity Party

Early last week, I was floored by the power of social media.  Again.  I received a Facebook message from a woman living in a St. Louis suburb who had a baby in May.  And survived SCAD a few weeks later.  I can't begin to describe the bittersweet feelings that pooled behind my eyes and in my throat - so happy she survived, but so empathetic for the emotions and feelings and road ahead.  As far as I know, we're the only SCAD survivors in the area (I have no idea how many people SCAD has killed). And, though I've yet to meet her, I feel less.... alone, freakish, helpless....

There's this commonality of experience between SCAD survivors (and perhaps other groups of people living with various diseases) that I think is worth mentioning.  We all have our cheerleaders - spouses, friends, family members, co-workers - who decide to sit in our corner.  They listen to us, support us, help us with meals, give us the opportunity to be a better spouse/friend/daughter/sister/co-worker, exercise with us, and never let us breakdown (unless of course, we really need it, in which case, they bring wine and chocolate to the pity party). And then, for lack of a better word, there are the "frienemies". Perhaps these folks have had a life-long presence and are near and dear to you. But for whatever reason, they get tired of hearing about SCAD pretty quickly. 

"You look healthy, stop complaining." 
"Why do you keep talking about what happened to you?! It's in the past!!"
"Oh god, here she goes again. I'm going to the bathroom."

I haven't counted the number of SCAD ladies who've lamented the loss of these friends/friendships, but I assure you that we each have dealt with a frienemy. And lately, I really wonder, is it really a loss?  

"People come into your life for a reason, a season, or a lifetime.  When you figure out which it is, you know exactly what to do."

I am a firm believer in this - don't get me wrong, sometimes it reaaaalllllyyyy sucks. But, I think it's okay if friendships don't survive. Perhaps, they lasted through the "season" in which they mattered most (to both parties). Sometimes, people just change. In fact, people change all the time.  For little tiny reasons and for colossal reasons, like SCAD. And it shouldn't feel like a bad thing to "break-up" with a former friend or put a dying relationship out of its misery. More importantly, SCAD has connected me with a whole new community of like-minded women - a whole pool of potential bosom buddies that I would probably never have met otherwise.  

The American Heart Association recently released a retrospective study of SCAD. It was hard for me to read and frankly, felt a little grim.  At 4 years, 21% of SCAD survivors have a recurrence.  At 10 years, 30% have a recurrence.  And, 47.4% of SCAD survivors will suffer an additional MACE (major adverse cardiac event) at 10 years. I'm sure there are many factors to be considered (damage done by SCAD, course of treatment, adoption of heart healthy lifestyle, smoking, etc).  But still.... I have made it a priority to share my experience of heart disease with anyone who'll listen and this study admittedly makes it a teensy bit harder to be bright and shiny.  There's still so much we don't know. I want to turn 40. And see Cameron off to prom. And celebrate my 25th wedding anniversary (insert pity-party wine, chocolates and spouse/toddler snuggles here).

But what I do know is that I'm going to meet my St. Louis-SCAD-survivor-sister on Friday. And I can tell her that there's more out there on SCAD now than there was 15 months ago.  And I can listen.  And I can be her friend for a reason, season or a lifetime. 

"What would you do if I sang out of tune,
Would you stand up and walk out on me?
Lend me your ears and I'll sing you a song,
And I'll try not to sing out of key.
Oh I get by with a little help from my friends,
Mmm, I get high with a little help from my friends,
Mmm, I'm gonna try with a little help from my friends." - The Beatles


  1. love it and the whole blog struck a chord with me too! My family supports me completely, while my husbands family chooses to move on and pretend it never happened ;-( I'm stuck with them though, huh? Enjoy meeting our scad sister!!

  2. I'm sure you know this but I'm here for a lifetime for you, Brian and Cameron. Nothing will ever change that..not time, not distance, not circumstance. We love you guys and will always be there for you.

  3. Just catching up. Better late than never, right? Anyway, this one's good stuff. There are no "like" buttons on blog feeds but... Dana Workes, "likes" this.

  4. I also REALLY like the pic on this one. Your baby is such... a... kid!