Looking back on the past 7 years since my Congenital Heart Disease diagnosis, I realized that I was always running from it. Every day, I was forced to face my disease straight on, but I continued sweeping it under the rug. I refused to talk about it, and even downplayed the seriousness of my disease. I kept it hidden as much as possible, refusing to accept it.
I cannot say I was really living life to the fullest during the 3 years when I was most sick. I threw a lot of days away, locked up in my house, away from friends, family, and everything I loved. I was surviving on one sleeping pill every night, at least one anti-anxiety medication each week, waiting for the next arrhythmia to hit. I was afraid my heart would stop, and if I could just stay in my safe bubble, then nothing bad could ever happen to me.
I was wasting my life.
I could not face my fear; the one dark cloud that hung over my head for so long. What is that, you ask? Simple. Dying young. The truth is, at some point in time, no amount of technology will allow my heart to keep beating.
There it is…. my truth… my fear. My fate?
Fast forward to today, 7 years after my initial diagnosis. and a couple years into accepting my “truth”. I am completely off heart medication, because rock climbing strengthened my heart, allowing it to pump blood more efficiently. I’m stronger and healthier today than I have ever been throughout my entire life. However, there is one catch…. My disease has also progressed, causing near-failure of the entire electrical system in my heart.
I had a cardiac monitor implanted into my chest last week, and will have a pacemaker sometime in 2018. When the electrical system in an individual’s body fails, cardiac arrest occurs. To stay alive, I will need to rely on technology to create electricity for my heart to beat. At 32 years old, I go through each day with the knowledge that advancements in technology, and my desire to fight this disease are the only things keeping me alive.
So, big question. Am I sad and depressed? No.
In the past, I would have dwelled on this, and probably asked God, over and over again, “why me?” When it comes down to it, why not me?
We all grow up thinking we are invincible, and have this seemingly unlimited amount of time on earth. When really, we all have a limited amount of time we are given. Due to my disease, I’m just more aware of it than anyone else.
Please keep reading…. I promise this is not all doom and gloom. There is a lesson.
After my recent surgery, I was given statistics about my disease, and what I may encounter as this progresses. At first, I cried. I couldn’t get past this potential amount of time that was given to me for my life span. I then realized something very important – my most important truth. I wasn’t afraid of dying anymore. I overcame my fear at some point while I have been living!
You see, I make it a point to live each day to the fullest. I laugh all the time, enjoy horribly inappropriate jokes, rock climb as though I’m training to be a professional (it will never happen), and spend quality time with the people I love. I told a handful of people so far that regardless of what happens to me throughout the lifecycle of this disease, I’m not going to stop being “me”. This disease does NOT get to win!
I realized that to live life with joy, and hope for the future, you have to accept your plausible fate, and face that fear head on by just living life! When that happens, you, just like me, get the blessing of living for each day, each moment, each memory, and each laugh.
I would not trade my life to be someone with the strongest heart in the world! I love who I am, and what this disease teaches me every day. I was born a heart warrior!
Whether I pass away at 35 or 95, one thing is for sure, I will have lived more life than most individuals I know. I will have dedicated my life to showing those I love that they mean more to me than anything in this world – they will never question their significance in my life. They will know that their presence made a difference in my life, and only added to this one chance I get to live. I will have made it a mission to help those without hope, learn to really live, and appreciate life, even in a storm. Each day, even in the face of pain, I will smile, and be grateful that God gave me the opportunity to experience life; He never had to do that…. but he did anyway!
My advice for heart patients, or anyone struggling in life with circumstances beyond your control; accept your fear, face it, embrace it, vocalize it, and let it create a passion which allows you truly live life. The road is long, and sometimes pitch black, but with enough faith and courage, life will be lived to the fullest. We just have to decide to make it happen.
One question you should ask yourself: How will you paint the picture of your life?
What about me? How do I want my life painted? Two words…… SHE LIVED!
I am grateful to have experienced love in many forms, leading to the birth of my beautiful son, who is and always will be, my best friend. I met the love of my life, and fall in love with him over and over again each day. My life is a gift, and I get one chance to make it everything God intended. I live to spread the news of hope, and am filled with more joy than I ever thought possible. I’m beyond blessed.
Don’t get stuck in your truth – LIVE IT! There is freedom in facing fear, and living life. Don’t give up, even in your circumstances. There is always beauty in the brokenness.
Don’t wait as long as I did to accept the truth in your life.
“You must live in the present, launch yourself on every wave, find your eternity in each moment. Fools stand on their island of opportunities and look toward another land. There is no other land; there is no other life but this.” – Henry David Thoreau
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As I read this beautiful piece , I tear up. This wonderful heart warrior is my sweet daughter. My very unexpected gift in life. You , molly, are my inspiration. I push through difficulty with you in my mind. Jesus blessed us all with you. You are loved .