How Maryann came to write Kara Mia...

Maryann Anglim R.N., B.S.N. lives in Bath, Maine, with her husband and daughters. A graduate of Loyola University of Chicago, she works as an operating room nurse.


Maryann on a summer day

 WHERE HAVE ALL THE COWBOYS GONE?

On April 7, 1995, my 14 year old daughter, Kara, collapsed of a cardiac arrest at a junior high school track practice. She was successfully resuscitated by the paramedics on the track, but not before minutes of anoxia had left her with brain damage. The diagnosis eventually became Long QT syndrome and her hospitalization lasted four months with that time being divided among the special care unit, the cardiology unit, and the pediatric unit where she was a rehab patient. The whole time that Kara was in the hospital, I kept telling everyone that I was going to write a book about this syndrome and our family’s experience. "Yeah right, Maryann," people would say to me as they rolled their eyes and thought, "Well, let us allow this woman her delusion." I noticed and watched everything and kept it all in my head and eventually I did write a book with Walter Allan, M.D., Kara’s pediatric neurologist. The book, KARA MIA, the story of sudden loss and slow recovery in a teenager with Long QT syndrome is the result of our collaboration. It includes current medical facts about Long QT syndrome as well as a personal account of our family dealing with all of the many ramifications of this cardiac condition.

Over the past year, I have done a few interviews for television and the newspaper and the most commonly asked question is Why did you write this book? The first time I was asked that question, I was on television and I quickly had to scramble for an answer. I chose the most socially expedient answer as I said, "to help spread the word of Long QT syndrome." It wasn’t an untrue answer, but it wasn’t the whole truth either.

The next time I was asked that same question, I was more prepared for it and my answer had a second facet: "to help spread the word of Long QT syndrome and also to help me process all that had happened to our family." Again, it wasn’t untrue, but it still wasn’t the whole truth. I still didn’t know exactly why I had written KARA MIA.

I asked my husband, Tom, "Why do you think that I wrote this book?" "Because you need constant adulation and praise and you have to be the center of attention at all times," he answered. Despite the fact that he may be correct, he was no help. I asked Walt, my co-author, "Do you know why we wrote this book?" We developed an answer suitable for the media, but the driving force behind the writing of KARA MIA was still a mystery to me.

Kara (left) and her sister, Guerin, one year after Kara's cardiac arrest
But this past summer I finally solved the mystery thanks to my 12 year old niece, Kelly, who was visiting us for a week. She loved the CD player in my car, put all her CD’s in the holder and played them on all of our drives. We listened to Fiona Apple, the Spice Girls and Jewel, but her favorite was Paula Cole, particularly the song "Where Have All The Cowboys Gone?" Kelly quickly figured out all of the 40 buttons on my dashboard with particular skill attached to the CD buttons. Over and over we listened to that song until I was pretty sure that I could be a back-up singer for Paula Cole.

I couldn’t escape the dark lyrics. I was a captive audience. "Oh, this song is so sad," I thought, as Paula Cole sang the lament of her joyless life and how she was hoping that cowboys do exist and that one, preferably John Wayne, would come to save her from her miserable day-to-day existence. She was hoping for someone to rescue her and turn her life into a fairy tale with a happy ending.

After listening to this song approximately 100 times, I finally and suddenly realized why KARA MIA had to be written. I wrote my part of KARA MIA because it was my way of writing a happy ending to our story. I realized that I had to be my own John Wayne - that I had to write my own fairy tale and happy ending and that cowboys do still indeed exist. And so here are the final paragraphs of our book:

The summer before Kara suffered her cardiac arrest was the summer between her 7th and 8th grade years at school. Kara had been a busy babysitter, popular with both the parents and the children. I always thought that when Kara grew up she would be a kindergarten teacher because she loves children so much. But that summer, she had been offered a spectacular job for two weeks as a mother’s helper for an unusual family.

The family consists of a mother who is a psychiatrist and her 6 children. I called them “The Rainbow Family” because five of the six children were adopted and they ranged in color from white to black with every shade in between. Normally, they had a nanny who helped with the day-to-day family routines, but during this two week vacation at the beach, the nanny was also on vacation and Kara was hired as the mother’s helper. Kara loved this family. She loved the mother, Kate, and she loved each of the children. She always told me that when she grew up, she was going to have a family exactly the same as Kate’s.

And then Kara collapsed. And then we realized that she had Long QT syndrome. And then we realized that it was a genetic problem and that she should never have children. One day, Kara and I were sitting on the sofa together watching a show about babies and I said to her, in a tentative manner, not knowing what response I would receive, “Kara, do you know that you should never have children?” “Yes,” she said, “I know.” “Do you know why?” I asked her. “Yes,” she said, “because my defibrillator will hurt them.” “No,” I said, “it is not because of your defibrillator. It is because they will inherit the same heart problem that you have. Does that make you feel bad?” “No,” she said with her sweet smile, “I will just have a family the same as Kate’s.” So that is the final story I will leave with you. That is the story that will tell you that we are all going to be just fine.

So, you see, now when anyone asks me, “Why did you write Kara Mia?” I know the simple answer. It is because I had to write a happy ending to our story.




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