Invisible Disabilities

6460_106918074940_3438260_nAs my annual cardiology appointment approaches (on April Fool’s Day no less), I find myself in that annual state of nostalgia that occurs every time around this year. It might have something to do with the fact that my husband and I trek 4.5 hours south of DC to visit my original cardiologist and surgeon. I am more than loyal in this respect.

When I moved to Northern Va over a decade ago I tried to find a new home in the cardiology mecca that existed up here. Instead, I found crowded offices that treated patients like cattle, ushering you in and out before you had time to process any of what they were telling you. Well-oiled machines: yes. The safe space I had been accustomed to: no.

453fb830a28f434d1c4288a6712507aaIt is necessary to point out that I fall under the category of “high-maintenance patients” in that I have a lot of questions and an even higher amount of anxieties. I have invisible disabilities. I need coddling. Thus, I travel to Virginia Beach where my original surgeon, Dr. Gottimukala, practices.

He and the pacemaker technician, April, have been with me in this journey of my heart since the beginning. They consoled me when I first heard of the diagnosis. They have learned the ins and outs of my anxieties and know exactly how to deal with me. They know what I will and will not tolerate. They take my calls, deflate my panic, and they give the kind of hugs that mean something. What I appreciate most: Dr. Gotti will spend as much time as he needs to with me without making me feel like I’m a hassle. I recall one visit, in the midst of diagnosis as well as my divorce from my first husband, when he walked in with his kind face and said, “How are we doing today Carrie?”  I didn’t answer. I sobbed. For at least ten minutes. He pulled up a chair, handed me a box of tissues and waited for me to finish. It could have been hours. He would have waited. Luckily it was not, I managed to pull myself together.

There’s something poignant about the literal and figurative breaking of the heart occurring at the same time in a small office of cardiology in Virginia Beach under neon lights. I remember bringing them a gift basket full of chocolates and crackery snacks after that. I think it’s the only gift basket I’ve ever bought anyone just because I thought they were deserving of it. That’s saying something.

I also appreciate Dr. Gotti’s one-liners. My first surgery went off without a hitch and as he emerged from the surgery he told my dad, “She’ll be walking down the aisle at 70 beats per minute.” (The surgery occurred four weeks before my wedding.)  My second surgery to replace the battery a few years ago went off well too. He appeared out of the operating room and told Jason that in twilight during the surgery I professed my love for him. It might have been partially true. I do love him.

I had my first implant when I was 23, so the issue of having a pacemaker was compounded by the fact that I was young, and believed I was “invincible.” My struggles were different. I was concerned with more vain issues like scar size and placement, and I found myself bothered by displacement issues. The waiting rooms were commonly  filled with patients three times my age. This was an issue I wanted to combat and which is discussed in the article “For Young People with Pacemakers” which gives a shout out to the Facebook group I created, “Young Pacemaker Patients and Supporters.” The group was created to allow younger recipients and their families a safe haven and communal space to share their challenges and concerns. It’s pleasing to see the group has grown in the last few years to almost 300 members.

So tomorrow I will drive down and back in a day to Virginia Beach for what will be a relatively quick appointment to ensure my broken lead in my pacemaker hasn’t wreaked too much havoc on anything. See Image B for a depiction of a broken lead. F1.medium

People are always surprised when I tell them I make the drive to visit him rather than find a doctor more locally. My priorities are different. My expectations are different. My experiences are demanding of difference.


About carrieaddington

Poetry. Hair. Heart. More Poetry. View all posts by carrieaddington

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Jeffrey Levine

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