The Kid Hospital, Part III

Second surgery over. Electrodes removed.

A fighter.

A teacher.

A Little Buddha in Saffron Robe and Bunny Slippers.

The ride back home to Maine.

An immediate trip to the shore.

Clowning with Brother Alec, who played the part of a girl in a skit in the Woolwich Central School talent show that spring. Hence, the wig...

Well, I said I would post more pictures tomorrow, and that was several days ago. Truth be told, it is particularly difficult for me to tell this part of Lisbeth's story. Fifteen percent of people with seizure disorders have intractable seizures - seizures that are not controlled with medication. Lisbeth is in this unfortunate percentage. Surgery is one of the only alternatives for these folks.

The invasive monitoring took place in 1992, and from the onset of her illness in 1988, Lisbeth had been experiencing 12-20 tonic clonic seizures a month, in clusters that would render her non-verbal and perseverative for days. She spent days post seizure clapping and snapping and wandering around the house, spaced out, eating little. She was undernourished and sickly from all the seizures and long postictal periods. Lis had episodes of postictal psychosis, when she would wake in the night after having a seizure, then scream and tear off her clothing. She ran around frantically, bumping into walls, yelling, Mommy! Mom!! Daddy! and looked at us with eyes wild, and blank. Even though we were right in front of her trying to comfort her, there was no recognition. We had to physically restrain her. These were long and torturous nights - the episodes lasted for hours. Thankfully Lisbeth had no recollection of these times, they were like black holes in her memory. But during her handful of clear days, as she got closer to her next seizure cycle, she frequently had episodes of rage behavior - rages so extreme that we would have to call the ambulance, and have her transported to the hospital, where the doctors had difficulty finding the right mix of drugs to sedate her. These rages were neurological events, out of her control, caused by low grade seizure activity in her left temporal lobe, the part of the brain that rules behavior.

We had such high hopes that surgery would be Lisbeth's cure, and that she would be seizure free. Sadly, the invasive monitoring revealed that Lisbeth has more than one seizure focus - we knew about the lesion in her left temporal lobe from her previous EEGs. The EEG from the deep monitoring showed another focus in the back of the right side of her brain. This eliminated Lisbeth as a candidate for surgery, because she had to have one healthy hemisphere to compensate having tissue cut out of the other side of her brain. When the neurology team came into Lisbeth's hospital room with the final printouts and spread them out on the table, I saw it before they said it. I was devastated, and I began to cry. One of the doctors looked at me with surprise, and said a bit judgmentally, "It's not the end of the world, you know." I had to excuse myself. I found a "quiet room" and sobbed. No, it was not the end of the world, but my heart was broken. Years later I saw a documentary on TV about a Russian family that came to the US for their daughter's open heart surgery. The women in this family chanted, cried, moaned, and prayed aloud in the waiting room all through the hours that the girl was in surgery. My God. If only I could have done this.

People tell me that I am strong. And, yes, I now know that I am, but perhaps not in the ways that you think. I held alot in at this time. I had not dealt with my grief about Lisbeth's illness, and I imploded with debilitating panic attacks. I became agoraphobic. Finding out that there was no cure for Lisbeth's condition retraumatized my family. It equaled the onset of her illness in terms of emotional pain and confusion, yet it was a turning point. Issues that were kept at bay with what I now view as a naive hope, came boiling and bursting to the surface. My husband's depression, my anxiety disorder. Our son Andy was fifteen that spring - a tough age under normal circumstances - and this was an extremely challenging time for him. He reeled and rebelled, he began to drink and do drugs. He dropped out of school. He was the bell ringer, pealing out our collective grief and rage. And then Lisbeth began to have pseudoseizures in addition to her clinical seizures. We sought family counseling at this time, and Garry and I sought individual help as well, embarking in earnest on an excruciating but necessary course of grieving, acceptance, and finally, healing. As the title of this blog states, it's not bad thing. Lisbeth and her illness have taught us much...