When I was initially diagnosed in 2008, I was told that I was at risk for sudden cardiac death.  I wouldn’t have a heart attack; my heart would just stop and I would die. I also learned that this wasn’t something that was going to go away or be ‘fixed’ but a lifetime battle I’d be fighting. When we started telling people they all had the same reaction. Everyone slightly tilted their head to the side and said something like, “Oh no”, “Awww”, “I’m so sorry”. No one could hold their head up straight any more! Everyone felt sorry for me.  They pitied me.

Sabot demonstrating the head tilt. People do this with a face full of pity when you tell them your severely ill, have lost someone etc.
My pooch, Sabot, demonstrating the head tilt. People do this with a face full of pity when you tell them your severely ill, have lost someone etc.
SIDE BAR: I polled Facebook, and asked my friends to choose one word that described me. I’m going to use their responses to help with the post at least twice.  Here comes the first. 

Some of my friends described me as determined, resilient, strong, driven, fierce, brave and unstoppable. I’m honored to be described that way. I would like to point out that these types of qualities very rarely allow me to wallow or even graciously accept pity.  When someone says, “Oh I’m so sorry” I sarcastically think about how I should respond.  Should I say, “No biggie, I’m dealing” or “Oh my goodness I know it’s so horrible I just don’t know what to do.” The first option ends the conversation pretty quickly but I’ve realized that it makes people think that I don’t want to talk about it. I will absolutely talk about it! I’ve done it in front of a luncheon full of people and I write a blog about it!  Talk about it isn’t the issue – I won’t be pitied. The second option, tends to be inappropriate for social context.  Who wants to have a sob session when you asked how I was doing passing me in the commissary. Usually I respond with a simple, “Thanks”

That being said, I’m not perfect. I have a life threatening condition that I’ll be dealing with forever. There is a possibility that I could die before they find me a new heart but there is also a chance I could get a new heart tomorrow. Some of the other words used to describe me were, happy, bubbly, peppy, outgoing, positive and spunky. Demi Lovato in her book, Staying Strong 365 days a year said, “You have the capability to change your life all with a simple shift in perspective”. My mom gave me this book for Christmas a few years ago and I’ve read it, reread it and dog earred the crap out of it. That quote reminds me that every morning when I wake up I have a choice. I can feel sorry for myself or I can put on a smile and enjoy the day.

Demi also said, “One of the reasons I was so unhappy for years is that I  never embraced my emotions and I was trying to stay in control.” My friends were very kind in the Facebook poll and didn’t mention my bossy and controlling nature. I have no control over my health, when I get a heart, or if I live or die so I try to exert control over, well… everything else. They also failed to describe me as anxious, panicked, worrisome, and overwhelmed by the feeling of spinning out of control. I don’t always feel comfortable having conversations about these feelings or my fear of dying with my loved ones. It’s scary and depressing for all of us. That being said I have a wonderful outlet for discussing “the scary”.

I have a therapist.

I can talk to her about anything without fear that she is going to start crying on me or heaven forbid… head tilt! I have different friends that I enjoy doing different things with. I have different doctors for different parts of my body. My therapist is like having a friend who takes care of my brain. We don’t always talk about my heart. We talk about my kids, my family, stress etc. She spends an hour every two weeks listening to whatever bothers me. I leave every week feeling physically lighter. It’s amazing. She has also taught me a lot about myself. One of the best things I’ve learned through my therapy can be best expressed in a quote by none other than…. Tupac, “You can spend minutes, hours, days weeks or even months overanalyzing a situation, trying to put the pieces together, justifying what could’ve, would’ve happened… or you can just leave the pieces on the floor and move on.” Elsa said it just as well, “Let it go!” I’m still working on that.

I truly believe that addressing your mental health, even if you don’t have a clinical diagnosis, is very important when you’re on a tough journey – especially a long one. I know I’ve quoted Demi Lovato and her book a lot but here’s one more, “Don’t invalidate your feelings. Honor them.” I know that using therapy to honor my feelings has saved me a lot heartache literally and figuratively.

Head-tilters mean well but, as my friends described me, I’m outgoing and prefer to drive on than wallow. I want you to know that if you ask how I am and I come across as short or dismissive please know I don’t mean it unkindly. No one really wants to have a discussion about how I didn’t follow my strict low sodium diet to a T over the 4th which caused me to fill up with three pounds of extra fluid.  Not cute.

If you want to know something about the particulars of my condition, what the plan is, anything about the transplant process etc., please ask! I’m an open book. I hope my openness about seeking help through therapy allows you find the courage you need to use this support network as you choose.

Courage, dear heart. ~C.S.Lewis

Demi Lovato’s book is available on Amazon and Barnes and Noble.

I've read, re-read and dog-earred the crap out of this book. It has gotten me though a lot and I highly recommend it.  (I am not paid to say any of these wonderful things about this book)
I’ve read, re-read and dog-earred the crap out of this book. It has gotten me though a lot and I highly recommend it. (I am not paid to say any of these wonderful things about this book)

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