December 1, 2012
I’ve been at this for a while---dealing with seizures and an epilepsy diagnosis for many years----27 since the first, a febrile seizure, and coming upon our 23rd anniversary of an epilepsy diagnosis, though in THOSE ancient days the conventional wisdom was to label the condition a “seizure disorder” so as to avoid the stigma of epilepsy. Ha!! How did that work out?
Anyhow, I digress. The point of this blog is THE TALK. First, a little history. When Michael was diagnosed I immediately contacted the local Epilepsy Foundation. They were able to supply a great deal of information for which I was very grateful though I certainly didn’t anticipate any need for their support services. I became acutely aware of anything involving seizures. A People blurb that mentioned the death of some sport figure’s 10 year old son who died as a result of a seizure. A colleague whose 23 year old daughter was found dead in her bed (she had a significant seizure disorder), Florence Joyner’s death, and several others. I, unlike some of the parents who say their doctors never discussed the potential of death related to epilepsy, was pretty well aware death was very much associated with epilepsy. While it is true Michael’s pediatric neurologist never discussed it with us, I couldn’t avoid reading about it, hearing about it. As Michael said the other day when I brought up the “you know people that have epilepsy can die from a seizure or a complication from a seizure right?” “I KNOW Mom, that’s why you go up and down the hall fourteen times a night”!
Good for Michael. He knows. Now for the next part. I have been feeling guiltier and guiltier over the last several years as I read about the work of several Foundations dedicated to spreading awareness about SUDEP (Sudden Unexplained Death from Epilepsy). They promote monitors----motion, audio, and video. They promote service dogs to alert to seizures and “get help”. They promote full disclosure by MDs because with the knowledge death could occur, people could take preventative measures. We have our service dog, Katie, who seeks help from us when Michael’s nocturnal seizures become lengthy. I surmise she may alert us about 75-80% of the time but that’s a mere guess since we DON’T have an audio or video monitor other than yours truly. How can we really be sure?
So…about the guilt. If other people have defibrillators ( oh, sorry---didn’t mention that) motion, video and /or audio monitors are we being remiss? Should we be doing more to ensure Michael does not succumb to a prolonged seizure we cannot hear and Katie fails to alert us to?
The dilemma: Keeping Michael alive while preserving his privacy and right to make his own decisions.
So…last night we had THE TALK sitting around the table after dinner. My mother was there, so I guess we’re not “protecting” her anymore. We had a frank discussion. 50,000 lives each year are lost to epilepsy. 50,000!!! More than breast cancer!!! We talked and talked and talked. I told Michael of the options available to monitor more closely, to possibly prevent the unthinkable from happening. He was clear, adamantly clear; no audio, no video, no motion monitors!! He wants to preserve what little privacy he has. I respect that. I respect the Foundations’ that force those of us who love someone with epilepsy to confront the cold hard fact----the dirty big secret of 50,000 deaths a year that our national organizations and many physicians tend to minimize, sanitize or ignore. The BIG TRUTH that people die from epilepsy.