Tuesday, November 18, 2014

The Guilt of Good Health

Have you ever done something that made you feel guilty? Cheated on a test? Picked on someone? 
You know that guilt that eventually builds up inside you?  
That's me most days.  

Don't get me wrong.  This post isn't about me wanting people to feel sorry for me.  If anything, I want people to read this and start living life for the big beautiful things it offers and stop sweating the small stuff.  

Here's the bottom line: I feel guilty for being healthy.  

1 in 272,000.  or 0%.  Those are the statistics for Thalassemia.  Thalassemia is a genetic blood disorder which is most prevalent among Mediterranean people.  That is what my sister Heidi has. 

Thalassemia is the big dark cloud that has followed my sister for her entire life.  

Heidi is 3 years older than me.  For my entire childhood and most of my teenage years I always saw my sister as a protector. I never could see her illness as weakness.  It was like her role as big sister blinded me from the reality.  The reality was that she had a rare blood disorder that doctors really couldn't figure out.  I was too young to know that her life was so different than mine even though just a hall way separated us.  

From an early age my parents always encouraged Heidi to look out for me.  I was the younger sister and I'm sure they could tell that I was a highly sensitive child.  And that's exactly what Heidi always did.  She looked out for me.  As latch key kids we relied on one another for a lot.  Mostly, I relied on her.  

I relied on her for her culinary skills (and this is the reason to this day that I really lack in that department).  I'll give y'all a quick story that illustrates her natural culinary skills: I am probably 9 and she's around 12.  We decide to make our parents an anniversary dinner.  This dinner was not your typical dinner.  Our dinner for our parents consisted of homemade pasta.  Yep. She got out the pasta machine.  We made the dough.  We made fresh spaghetti for our parents. Admit it.  You're impressed. :)

Fast forward over 20 years and here we are today.  Heidi is very close to having a feeding tube.  Her god given talent of cooking immaculate meals and probably one of her greatest sources of happiness may be just a memory.  I'm sure she will still cook for Kevin, her husband.  Even so, I'm sure passion for cooking dwindles as the physical ability to enjoy it does.

Heidi had open heart surgery just weeks before beginning James Madison University.  I saw her in ICU with god knows how many tubes in and out of her as she laid.  It's been almost 15 years since that surgery and that image is still so very clear in my mind.  She triumphed on as I thought she would with her super older sister power. :)  She had a normal happy college life and then just weeks after graduating college, I held her in my arms after she had her first grand mal seizure.  And then the battle against seizures started.

And then there's me.  Still healthy.  Sure, I've had my ups and downs in life.  But I'm healthy.  It is NOTHING in comparison to what my big sister has endured and is still battling.   

How do I deal with all of this?

Terribly.  I have NO idea how to handle it.  I cry on my car rides home from work.  My parents and my sister and I are now grown adults with our own families but there's still a feeling of deep sadness and imbalance knowing that one of us, one of the four of us, is suffering and seems to be heading down hill.  

I struggle with the thought that this could be me instead of my sister easily.  I was somehow spared.  And I can't come to terms with that.  

So to my friends, I know I'm distant.  I am sorry.  I will try to break down the walls that I have built around me.

To my mom and dad: keep doing what you're doing.  In my heart it will always be the four of us as one strong unit.  A unit that remains strong because of you two.

To my sister: don't give up.  Thalassemia (or whatever is making this happen) has messed with the wrong bitch! hehe. Mom is probably so mad that I cussed in my blog. ;)

To my brother in law, Kevin: you're a stand up guy.  You were meant for Heidi. :)

To Nate: you're my rock. Life is easier with you in it. Keep the hugs coming.

And to my Jayden: keep the silliness coming.  Mommy needs it!

To anyone else reading this: keep living.  You're healthy.  Don't take it for granted.

For me, I think the guilt will always be there.  I'll carry on as I do but I will break down time to time.

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