To Those Who Said Photos of My Heart Surgery on Social Media Might 'Scare Away' Girlfriends


Living with congenital heart disease, one can often hide behind the wall of invisibility. Most everyday people don’t know that I have Tetralogy of Fallot, and they don’t necessarily need to. While this potential to appear to be completely healthy can seem beneficial at times, it is a false representation of who I am. I am someone who has survived four open heart surgeries, and I prefer to wear them as a badge of honor, especially my last surgery. The challenges I faced and overcame during that grueling 18-month process — where it felt like giving up was the easiest option — are far more valuable to me than any other personal life achievement. I gained a deeper understanding of my personal strength and determination, the meaning of life, and what family and friends mean — valuable lessons and strength that came in a way that very few other life experience could have brought to me.

So when some suggested to me that I take down the pictures of me on social media that were taken moments after I came out of the operating room because they might scare away potential girlfriends, I was more than little taken aback. Do you not think this is a part of my life? Do you think there is a cure, and it will just go away? Do you not know that this made me into who I am? Do you not realize that what brought me from that moment to today is the biggest accomplishment of my life?

To suggest that a picture that represents a large part of what has made me who I am is a turn off for someone — it is me. I happen to like me, and if she were a realistic companion, she would have to like me, too — which means accepting that I have congenital heart disease. I could only imagine if I would have turned around and asked them to take down the photos of their graduation or their child’s birth what their response would have been. I can hear them saying — but why? Those are the most special moments in our lives; those photos captured our biggest accomplishments.

Minutes out of the OR - March 14th, 2012
A photo of Joe taken minutes out of the operating room

For some, the triumphs in life are caught in beautiful images on the top of Half Dome, crossing the finish line at a marathon, or the birth of a child. Capturing my biggest triumph is a picture that is nothing but raw and real, freezing the preciousness of life. If that image or any others that represent my disease or my life scares off a potential mate, then I guess social media is a great filter for not wasting my time with someone who couldn’t handle all that makes me who I am.

To those that see that image as a negative, it shows that you lack the ability to see the beauty in what it represents. Hours before, my heart wasn’t beating for the fourth time in my life. A surgeon was holding my heart in his hands and with extreme skill rebuilt my heart and got it to beat again. He added untold years to my life, and without his abilities I would not be alive to be writing this article. How is that not a beautiful? It seems just as consequential and beautiful as the birth of your child.

Social media is full of images of what people want the world to see and think about their life. But the real images of life that have a deeper meaning and represent the real struggles of others are not prominent on social media.  So no, I won’t take down any picture that represents part of who I am in fear of what someone else might think. To those who think I should take them down, they need to come and walk in my shoes and then they will realize that those photos mean just as much if not more than any photo they have or could ever have.

I choose to be me whether I am writing a blog, sitting across from you at dinner, or surprisingly even on social media. I don’t have time to waste worrying about being somebody I am not and I don’t want anyone to like me for some façade I have created, no matter who they are.


Find this story helpful? Share it with someone you care about.


Related to Congenital Heart Defect/Disease

bride walking down aisle with man who got her father's donated heart

One of the Sweetest Stories of Organ Donation Ever and What It Means to a Heart Mom

You may have seen the headlines. Last Friday, Jeni Stepien married her fiancé Paul Maenner in a beautiful ceremony near Pittsburgh, Pennsylvania. Sadly, Jeni’s father could not walk her down the aisle because he had lost his life tragically years earlier. According to a New York Times article, Michael Stepien was shot during a robbery one night in 2006, [...]
Joe Valente with his friend, Lindsey

How My Friend With a Chronic Illness Gave Me the Courage to Tell My Story

A potentially fatal chronic disease is not something many people have in common, but it’s something my friend, Lindsey, and I share. I hoped to reach out to her to give her a little comfort and understanding. Being chronically ill in your early 30s isn’t something many people share, but I hoped we could relate. I was scared because [...]
parents holding their newborn baby

To Myself and My Husband on the Day We Became Heart Parents

I see you sitting there in that scan room. Cold with fear and the terrible realization that something is wrong, very wrong with your baby’s heart. I see you clinging to each other, neither wanting to voice the terrible thought that fills both your minds — that your child will die. I see your tears, your pain and the [...]
Ariel May in the ICU

Why Parents Need to Know About Rare Congenital Heart Defects

Ariel May. This story is about my daughter, Ariel May. She is 8 months old, and will be 9 months on July 31st. She has always been a very happy baby, loving to play with others and always smiling. She was crawling and standing up, and slowly learning how to walk while holding onto the edges of furniture. [...]