By Stephanie Hodgson
30 Aug

In the Face of Death, Follow Your Heart

Tuesday, August 30, 2011

“Almost everything—all external expectations, all pride, all fear of embarrassment or failure—these things just fall away in the face of death, leaving only what is truly important. Remembering that you are going to die is the best way I know to avoid the trap of thinking you have something to lose. You are already naked. There is no reason not to follow your heart.” ~Steve Jobs

Three years from turning thirty, I came to an awakening about my life—where I had been, where I was at that moment in time, and where I was headed. It all hit me like a head-on collision. I’ve never been the same since. I wondered, at that time, why now, and not then?

I mean, hearing the news about my congenital heart disease at age 17 should have been enough in itself to cause me to bow down and not want to go for my dreams. Then, it wasn’t so much a feeling like my life was over; instead, more a feeling of being vindicated after all those years of wondering what was wrong with me.

What the medical team said to me then was that I would know my limitations. They said that I should be able to go on to art school, since being an artist isn’t as strenuous as being a doctor, marathon runner, or construction worker. They also said that I could die instantly, in my 20s, 30s, 40s, or later. They didn’t know, but they said usually people with my specific congenital heart defect might begin to experience more problems in their late 20s to early 30s.

With all of this in the back of my mind, my twin sister (also a very talented artist) and I went on to art school in Pittsburgh. I had begun receiving a small SSI check and I got help with the Office of Vocational Rehabilitation in Pittsburgh to attend school. The amazing thing was they provided transportation to and from school each day. They let my sister ride with me as I needed help some days carrying the heavy artist’s portfolio.

It wasn’t easy, but we both graduated at the top of our class. We followed our hearts to New York City where we began working in computer graphics.

Life has a way of creeping up on you and before I knew it I was in my late 20s—almost 27 years old. Maybe I had subconsciously known I was heading into that time of life when the doctors said things “might” start getting bad. Call it prophetic or whatever, but I just broke down emotionally. I began to fear dying. I felt the urgency of death and felt the fragility of life.

I still do.

I am 46 years old now, almost three decades after my diagnosis. I still struggle with feelings of failure and lost hopes and dreams. But what I’ve learned is that you can’t live life worrying about whether you’ll be here tomorrow, next week, or next year. I’m learning to live in the moment.

I’d like to say to those who are struggling with life and their CHD: Live life and love life to the fullest. Follow your heart and it will lead you through the many seasons of life.


Add yours below.


The opinions expressed by ACHA bloggers and those providing comments on the ACHA Blog are theirs alone, and do not reflect the opinions of the Adult Congenital Heart Association or any employee thereof. ACHA is not responsible for the accuracy of any of the information supplied by the ACHA bloggers.

The contents of this blog are presented for informational purposes only, and should not be substituted for professional advice. Always consult your physicians with your questions and concerns.