By Kelly DiMaggio
2 Apr

Piecing Together My Identity

Thursday, April 02, 2015

Since New Years, I’ve been into clean eating and at-home yoga. One of the mantras that tends to come up a lot in the yoga videos that I do is “head over heart, heart over pelvis.” Now clearly the pelvis part isn’t applicable here, but the “head over heart” sweet whisper has really resonated with me lately. Why? I can’t exactly pinpoint it—but it’s definitely been a good thing.

What I find the most interesting in my day-to-day life with my CHD, hypoplastic left heart syndrome (HLHS), is the profound impact it has had on shaping my identity, cliché as that may seem. At 26, I feel that I am finally just beginning to "put the pieces" of my life together—particularly in regards to my identity as an adult with the CHD, as well as an adult with a chronic illness. I am a patient, a graduate, a financial professional, a biology student, a daughter, a wife, a sister, a friend, a granddaughter, an aunt, a survivor… the list goes on and on. What I want more than anything is to put all this together, and to begin to piece together my identity.

That brings me back to “head over heart.” I think as an adult patient with HLHS, I feel I am constantly trying to reconcile the two. What does my head tell me? What do my emotions, or my heart, tell me? Sometimes I feel my heart is literally bursting at the seams with joy—joy and gratitude towards the life I live and those who live it with me. I am truly blessed.

Yet other moments I feel my heart is breaking into a million little pieces. Fear of the unknown. Sadness at the pain and worry my loved ones experience, particularly my husband, Michael. He is without a doubt my angel here on earth.

And then there’s the mind, the head. I believe I see things through a variety of lenses. As a biology student and having worked as a patient care technician right after college, medicine fascinates me. The technological and scientific advancements we have made, not to mention the direction in which the research is going, are unbelievable.

I had the most life-changing experience this past fall at the Mayo Clinic in Rochester, MN, where I participated in the HLHS Regenerative Medicine clinical trial. Perhaps the biggest focus of the study is described as follows: “Studying how regenerative therapies can strengthen the hearts of HLHS patients and delay – or even prevent – the need for heart transplants in people with HLHS.” If that doesn’t evoke the “wow factor,” then I certainly don’t know what does!

Medicine. Technology.

The advancements they have made are astounding. I am confident in the care I will have as the needs arise. I am lucky enough to have a fantastic cardiologist who is specially trained in CHD and made my experience in transitioning from pediatric to adult care wonderful and reassuring. Yet, the fright still takes over. The “holy crap, how is it possible that there’s a solid chance I’ll need a transplant down the line?!” Or what about the fact that I have a chronic illness requiring lifelong care?!

Mindblowing. Terrifying.

It’s a constant juggle to even remotely begin to navigate these feelings—but a challenge I choose to embrace. I can’t wait to see how I can grow my role and identity, and what further advocacy, support, and awareness opportunities I can get involved in.


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