I’m very open about having Congenital Heart Disease, the obstacles I face, and how I dig deep to find every ounce of courage available, but I have never really discussed how I got here. Some things were always a bit too personal for me to share to a wider audience, but I’m learning the more I share, the more I can help others who identify with my past and current battles.
This look into my past comes from my point of view and individual experience.
I recently read something that hit close to home; “If you never heal from what hurt you, you’ll bleed on people who didn’t cut you.” I’m blessed to have an amazing community of rock climbers in my life, who are absolutely my best friends, along with husband Dave, family, and my amazing son! However, I wasn’t always so blessed with this support system, and due to that reason, found that at times, I was shutting myself off from one of the closest individuals to me, in fear of being hurt; That person is my husband. It has taken me a long time to overcome this fear and truly let him in, removing every wall I have built over time.
To give the above paragraph context, I want to start from the beginning. I met Dave about 3 ½ years ago, and we instantly became best friends; eating lunch together every day, going on hikes, running, and finally climbing. From the moment I met him, my heart knew he was the one. It was love at first sight. No doubt about it, I just knew we were connected, and that our lives would join together. Dave supported my desire to overcome my CHD, and always urged me to do what was best for my health, including working out, and trying new things, like climbing! If it wasn’t for him, I would never have had the courage to rock climb for the first time… or hike alone for the first time… or pick up running… or do anything that I had wanted to do for so long. Sounds strange, right?! This girl, who always pushes herself was afraid to do anything?
It’s true, and here is why….
I got into a serious relationship at a very young age, and because we shared a son, I chose to stay, and “make it work”. It was when I got sick due to my CHD that I truly realized how alone I had been all along. It’s easy to make things work when you accept certain behaviors, and just keep putting one foot in front of the other to keep a family together. When I got sick, things in me changed, and I realized I didn’t deserve the treatment I had been given.
For me, the final straw was after being hospitalized a few times, I was sitting on my couch, and my arrhythmia was really bad; I was fearful I had to be cardioverted again. I yelled up the stairs that I needed help, and my ex-husband casually walked down, and when I told him what was happening, he sighed, slowly walked up the stairs, took his time, getting dressed, and then finally woke up our son so we could all go to the hospital. I was at the bottom of the stairs crying, shaking, wheezing, and breathlessly saying, “Call 911.. call 911”; he didn’t. About 10 minutes later, he came downstairs, and drove me to the hospital in complete silence. He later admitted that he was getting tired of this happening. God, I had never been so alone in my life. What followed after that day, was me shutting myself away.
I had one last surgical procedure after that, and when it failed, I think it may have been the first time he found an ounce of empathy. I remember reading a letter he wrote on the ipad, apologizing for how he had treated me, and his remorse for never having tried to understand the pain I was going through. I saved that letter for years, holding onto that piece of humanity that he has finally shown me after years together. Fortunately for me, it took one update to my phone, and that letter was gone. I remember being crushed, because I no longer had that piece of proof that he actually loved and cared for me. I say “fortunately”, because it was a blessing that the note went missing. It should take more than a piece of paper to believe that the person you are with loves you. I just wish I would have known that back then.
When I found the courage to finally speak about this, and my unhappiness, all he could say is that he had been very happy and didn’t understand why I would feel this way. You see, it was easy for him and comfortable, because I never used my voice, always caved in, and felt like I owed him something for at least having stayed with me while I was sick. I realized I was staying due to guilt, ignoring the way he treated me, and making excuses for his bad decisions and emotional abuse towards me. I had become so used to the emotional disregard.
Being emotionally abandoned, alone in life while struggling with CHD, is not acceptable, and not what we should ever expect or tolerate.
This past year I spoke with other women and even men who had gone through the same thing and chose to leave their partners. We all had the same things in common; abandonment due to heart-related issues.
Our experiences taught us that when we allow someone to get close to us, they will eventually leave. Our sickness rearing its ugly head will eventually become too much for someone, and they will pull away, hurt us, cheat on us, and even stop being intimate with us, turning to other things for their own happiness.
I also had another thing in common with these groups I spoke with; when we fought against our disease and decided to become healthy, our spouses held their ground, dug their feet in, and refused to grow with us. There were also similar stories of sabotage; Even for me, I remember going to a Zumba class, and not even 5 minutes in, I received a text message from my ex—husband stating, “You won’t be able to do this without me”. I remember being so sick to my stomach, having to leave the class, then being told at home that I was making a mistake with my life.
My advice to anyone going through a story similar to mine is this; Have a direct conversation with the negative relationships in your life and say, “Grow with me or leave.” You deserve better and should demand just that!
As Ilene Strauss Cohen Ph.D states, “There’s a reason people avoid dealing with the hurt. It can be like pouring alcohol into an open wound. Though it helps with the healing, it will burn the crap out of us in the process. So rather than trying to heal, many people close themselves off, blame people for being cruel, and crawl into their own cocoons. They convince themselves this is the only way to live because their past experiences have taught them it’s too dangerous to love and be vulnerable to another person.”
The scarring from this previous relationship caused me to instantly put up walls with Dave when I first met him, even trying to run him off. I told him about my congenital heart disease, explained all the horrible things that could and will most likely happen, and told him that he will always get an “out”. I explained that being with a sick person is too much, and that he needs to cut his losses before he gets too close; he refused. From those days early on, he showed commitment to me, and refused to allow any future medical setbacks for me to get in the way of our relationship. He wholeheartedly disagreed that he gets an “out”, and made it very clear that we’re stuck like glue; I wouldn’t have it any other way with that man. I never knew that there would be someone in this world who would want me, scars, surgeries, imperfections and all.
Fast forward 3 ½ years later; I am married to Dave. He helped me shut out the negative relationships in my life, supported me 100% to chase my dreams, and got me out on my first hike after having been sick for so many years. He taught me that there are people who won’t leave, who won’t shut you out, and who will hold your hand through the darkest moments. He taught me how to trust myself and my heart again. He showed me what love is, and what it isn’t. Dave opened my heart to the beauty in life, teaching me how to value myself, respect myself, and letting people in. I now have a community of friends, supporters, and family whom I fully trust.
For those of you going through the pain of your illness and experiencing the loss of self and trust in others, don’t lose hope.
We deserve love. We are good enough. Our scars do not make us undesirable. We have our entire hearts to offer the people who actually deserve it.
If you are disconnected from your spouse or loved one, please open up to them, and if they choose to talk with you, and grow, then hold them close to your heart, and heal together. Don’t allow your disease and unhealthy relationships dissuade you from seeking a true connection with a person or community.
People who love you will not abandon or destroy you; instead they will show you love every day and walk with you through everything life has in store. In return, you will give that person your whole heart, trust them intimately, and be filled with more joy than you ever thought was possible.
”Be not the slave of your own past – plunge into the sublime seas, dive deep, and swim far, so you shall come back with new self-respect, with new power, and with an advanced experience that shall explain and overlook the old.” – Ralph Waldo Emerson