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Why Being a 'Bionic Mutant' Middle School Teacher Is Helpful for My Students

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Every year on the first day of school, I have an important (but humor-tinged) discussion with my 8th graders that includes the statement: “I am a bionic mutant.” Every time, I am met with giggles and quizzical stares. They think I’m kidding; I laugh with them and then I tell them, “No, it is true.” Then I tell them about my condition, long QT syndrome (LQTS).

You may wonder, “Why would you tell teenagers (gasp!) about your rare genetic disorder?” and I’ll tell you that it makes me a better teacher to do so.

Hi, my name is Liz (Mrs. S. to my students), and I have a rare genetic heart condition called long QT syndrome (type 2) that is caused by a mutation of the HERG gene (hence the “mutant”). I also have an implanted cardiac defibrillator (ICD) — enter the “bionic” part of “bionic mutant.”

Long QT syndrome is a tricky, often difficult to diagnose disturbance of the heart’s electrical system. It causes an abnormality of the heartbeat which can lead to symptoms such as fainting, seizures, and sudden cardiac death. It is often the culprit in those horrible news stories where a young, seemingly healthy athlete dies suddenly on the field.

Yep, that scary phrase — sudden cardiac death — is definitely a doozy. (That’s why I have the ICD!)

You may have never considered that one of your child’s teachers could have a rare, potentially fatal disorder, but I’m here to tell you that it can be a good thing!

I’ve learned many things by being a teacher with a rare health condition, and I think I’m a better teacher because of it. Here are some reasons I share my condition with my students:

1) It shows them you can have health challenges and still be a productive member of society. Many people assume having a serious health condition means you stay at home and do nothing, or that you cannot contribute. Showing up and teaching class shows students that I may have good and bad days, but I’m still working hard for them.

2) It shows them being unique or different isn’t limited to your age. Middle school is an especially tough time for students as they try to grapple with identity and who they want to be. Many students think the things that set them apart make them a “weirdo” or “strange,” but I emphasize from day one that being different just makes you more you, and that “being you” can be awesome. I’m not going to pretend I don’t have long QT, just as a student shouldn’t pretend to be someone they are not.

3) It teaches them to “not judge a book by its cover.” Most people would never look at me, a 33-year-old woman, and think, “Wow, that young woman could go into cardiac arrest right now.” My illness is mostly invisible, save for my ICD scar. This can present challenges, as people make assumptions about what I can (or can’t) do just by looking at me. My condition brings to the forefront on day one that just because you interact with someone doesn’t mean you know their challenges in life. Making an assumption or believing a stereotype without knowing the whole story can be unkind and potentially dangerous.

4)  It teaches them to adjust to life’s curveballs. Yes, it may be a little frightening at first to hear your teacher has this condition, but she told you exactly what to do in case of an emergency. Also, there will be days when she might not feel 100 percent, and things might not go as planned. This reminds them the world is not perfect, but we can be prepared to handle what life throws at us and adjust accordingly.

5)  It brings me a unique perspective in dealing with a student’s health concerns. There is nothing quite as wonderful as making a genuine connection with a student. I’ve had students with disabilities tell me how glad they were when I told them about my condition because it meant they weren’t so alone. I’ve helped students who didn’t have access to health care get resources so they could get their symptoms checked out by a professional. I’ve had students tell me they really appreciated how accommodating and concerned I was after their health problem or diagnosis. My disorder has opened those doors for students who wouldn’t normally trust a teacher to “get it.”

Inevitably, life always brings me back to that vulnerable moment in front of a classroom of middle schoolers. Being a teacher with a serious health condition isn’t always easy, but it’s not impossible, nor does it make me any less of a teacher. Incredibly, having LQTS has opened many connections to students, and it reminds me I have lessons beyond reading and writing to teach them.

Yes, it can be difficult having a scary, chronic, invisible illness. It’s hard to be vulnerable, to rely on others and to know your limitations. But my invisible illness gives me my “bionic mutant superpower:” teaching teenagers we are all human beings, flaws and all, and that’s OK.

Visit the SADS Foundation to learn more information about long QT syndrome and other serious heart conditions.

Originally published: August 10, 2016
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