I'm sure there are many new angels in Heaven today, but I personally know of one. Joseph Knight was only 19 months old, but I will always look up to him. In the past several years, I have become quite blase about my epilepsy because I have had enough seizures to know the drill--I have my aura (approximately 4 minutes) and then it spreads to become a grand mal seizure, something I have only experienced some two dozen times in my life, mostly at night in bed, but I know I will come to, recover after about 24 hours, and life will walk on.
Coincidentally, Joseph's death falls on the 33rd anniversary of the first GM seizure I can recall experiencing. I was not quite 12 years old, and I woke up with a sick stomach that gave way to heartburn, vertigo, seeing spots, and light and sound intolerance. Next thing I knew, a loud moan escaped me, and all went black.
I will never forget that fear--how I felt, and then the lost time as I awakened in the hospital. I would learn that it wasn't my first documented seizure, but that there hadn't been many before that, and after nearly 8 years, my parents had been hopeful that I had "outgrown" them. All my others had been blamed on shunt failure, infection, or fever, and I did have a fever with this one, but it was attributed to a surge in hormones, as I was in the thick of puberty, and I went back onto phenobarbital for the next 3 years.
Then I would spend time--about three years--off all medication, with only clusters of what we later learned were minor seizures at season change. They would often last for days, I'd have as many as 40 a day, and they made me horribly sick, but I always knew I'd recover, and I did. They weren't even much to see--some paling of my skin, movement of my eyes and an occasional twitch or shake of a hand or arm, for about two or three minutes. Then they would stop, until the next one, but when the offending weather front blew through, eventually my brain would stop whining and do its real job.
I was 25 before we realized these were seizures themselves, and that they might be able to be controlled with medication. Then we tried several meds before I finally gave up and decided I could live with them better than I could cope with side effects and reactions from multiple medications, but I thought I still lived well, so I continued on.
In the meantime, I made my way through high school, college, and a medication reaction after a breakthrough GM seizure that would change my life and teach me all about the importance of self-advocacy (mentioned in a previous post), but once I emotionally recovered from that experience and saw so much from others I found online who had been through so much worse, I became very grateful for what I had. After all, I had experienced enough seizures to know not to be terrified of them, and I could still live a full life. I learned to drive, got licensed, got married, had children, and walked on.
Then came Lacy's struggle with fertility and finally, Jimmie's birth. Life was happy, in spite of her mom's death soon after her wedding...until Jimmie's Infantile Spasms diagnosis at four months old, soon after she had called me about some peculiar and frightening movements he had been making. During the next nearly four years, I would watch his struggle, mostly from afar, and silently count my blessings while worrying for him and for Lacy and David. Finally, his seizures came under control, and my son's autism had become manageable, so again, life was good, but then I began to realize just how many people I knew who struggled every day with seizures and what epilepsy had done to their (and their child's) life. Sure, I was okay, and I would be.
Then Gina died--suddenly. I examined my attitude again. We had reason to believe asthma had taken her, since she'd been found holding her nebulizer, but her post-mortem exam revealed that she had died from "a simultaneous multi-system shutdown." Had she really had a seizure and just thought it was an asthma attack? Nearly four years later, we still don't know, and we probably never will.
There have been many posts on my forums about SUDEP: Sudden Death from Epilepsy. I always thought it was rare, but now I wonder if it really is. I have read that it generally happens in cases of poorly- or uncontrolled GM epilepsy, but...is it always uncontrolled in such cases? How much risk do we all have?
For now, I am cautiously content to keep doing what I do, because my life is busy, and I can't sit and wait for the other shoe to drop, whether it be a seizure, worsening of my epilepsy, shunt failure, or anything else, but I was reminded today to count my blessings and always be aware that my life can change in the blink of an eye, and I owe that lesson to a little angel named Joseph Knight. God bless you, Little Buddy. Thanks for sharing your sweet, short life with me and teaching me what's really important in life. Love, Liz
