The Mixed Emotions I Had Seeing My Rare Disease Portrayed on 'Bones'

I wouldn’t exactly call myself a superfan of the TV show “Bones,” but I am pretty familiar with it. The episode in question titled “The Carrot in the Kudzu” just so happened to a air on March 24, 2014, exactly one week after my aunt survived a sudden cardiac arrest due to long QT syndrome (a rare genetic heart condition already diagnosed in both my mom and I). Three years later, I still remember exactly where I was when the episode aired. I was with my mom, resting, and she happened to have the TV on in the background. I wasn’t really paying attention to what was on. It seemed to be nothing more than background noise that faded in and out of my awareness.

Then, I heard one of my favorite characters on TV, Dr. Temperance “Bones” Brennan, say the words “… a rare heart condition called long QT Syndrome.” I immediately sat up in shock. I couldn’t believe what I had heard. Did a popular TV show really just mention the rare heart condition that had changed my family’s lives forever by name? I don’t think I’ve ever gotten up so fast in my life. I had to see this for myself.

The case begins when the remains of a young, seemingly healthy man are found on the side of a road. Despite studying the remains extensively for days, they are unable to determine an immediate cause of death. Later, it is discovered that rib fractures observed on the body likely resulted from the man receiving chest compressions performed during CPR several months before his death. I started wondering what direction they were taking with CPR having been performed on a seemingly young and “healthy” man whose heart seemed structurally normal. Could the show really be going where I think it is?

They are also able to determine that the man lost consciousness immediately before death despite not being able to find anything that would explain why he lost consciousness. It is at this time that they begin to suspect he had a heart condition of some sort. By this point, alarm bells are going off full force in my mind that the man probably had long QT or another sudden arrhythmia death syndrome (SADS) condition.

Upon obtaining his medical records, it is discovered that the man had indeed been diagnosed with long QT syndrome two years before his death and that he likely died because he stopped taking his beta blockers, which are generally the primary treatment for long QT, due to unwanted side effects. In the end, it is revealed that the victim died when a car drove up behind him and honked its horn, sending him into sudden cardiac arrest and eventually causing his death.

My first reaction was to be extremely excited that such a popular show had taken on depicting my rare condition. The condition that for the eight months I had been diagnosed and the year and a half since I had almost lost my mom to it, I constantly heard “I’ve never heard of that” when having to explain it to people. With a condition like long QT that generally affects otherwise healthy looking people, it is crucial to get awareness out there. If my mom or I could have had our symptoms of blackouts, seizures, and near drownings recognized before her sudden cardiac arrests, it is possible that they could have been prevented. Awareness saves lives. So, I was grateful to see long QT put out there to such a large audience who now might be able to recognize the condition if they see it again in the future.

 

And then, it happened. The feelings of joy and gratefulness I had felt up until this point morphed into sadness and a little bit of anger when the quote that I remember word for word to this day was spoken. After Bones explains long QT fairly well, Agent Booth responds by saying, “That’s a hell of a way to go through life. I’m surprised he lasted as long as he did.”

Although I agree that long QT is an absolutely terrible condition that I wouldn’t wish on anyone, as long as the condition is well-controlled and stable, for the most part, we live pretty normal lives. We don’t sit around waiting for death to come. We go out there and live our lives the best we can (with extra precautions, of course) because I don’t just want to survive day-to-day. I want to thrive.

Long QT didn’t stop me from flying to the Yukon only eight days after having surgery to insert my implanted loop recorder (ILR) when I was 14. Long QT didn’t stop me from laying on the glass floor of the CN Tower at 16. Even though there are things that I cannot do, there is much more still that I can. I may have long QT, but long QT certainly does not have me.

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Lead photo courtesy of the Bones Facebook page