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Writing About My CHD Journey

Tuesday, June 30, 2015

By Kelly Deeny

I’ve been absent from the ACHA Blog for a bit, and there’s a reason for it: I ran out of things to “say.” Recently, every time I sat down to write a new entry and join my fellow ACHA bloggers in chronicling our CHD journeys, my mind went blank.

“What haven’t I written about yet?” I wondered. “What new perspective, insight, advice, or milestone do I have to share?” I felt like a broken record and all the drafts seemed inconsequential compared to those of other CHD survivors.

I don’t go to CHD conferences, comment a lot on other blog posts, or offer helpful anecdotes. Why not? I don’t feel as though I belong.

My VSD repair occurred more than 35 years ago, and the physical symptoms are nearly non-existent, with the exception of my scar. I see so many updates on those with heart defects much more severe than mine, and whose CHD medical journey continues to this day. I haven’t struggled with my heart malady to the extent of my fellow CHD survivors, and I worried that I didn’t have anything substantial to provide in the way of insight.

Then, I realized that while I may not have a lot to say about the physical effects or current medical updates, I do offer an interesting perspective on the emotional and spiritual trauma from my open heart surgery. Growing up, no one talked about these issues. No one alluded to the fact that there could very well be scars on the inside that were never tended to.

My CHD experience wounded me in not only body, but in mind and spirit. I suspect that there are many others out there who understand completely of which I “speak.” As I continue on my path of healing, I hope my discussion of these topics will prompt others to do the same.


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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.

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