Monday, May 3, 2010

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...


  1. Wow--You'd think the doctor would understand some sobbing over this--jeeze! Are you only suppose to cry at the end of the world? Save your tears for the end of the world? There are a lot of little ends of the world out there. My god, go have a good cry---I did, just reading these three posts and I did back when it was happening. I can see why this must have been tough to write about.

  2. Hey, Sue

    I know, you'd think. I was amazed at his response - but I think that doctors detach emotionally in order to do this work. Probably how they stay sane. Who knows. Maybe he thoughht I was losing it, or maybe he was trying to comfort me in his own way. Whatever. A+ in neurology, C- in bedside manner. They probably ought to have a trained counselor on those bad news teams...
    Yes, this is tough to write about, but from the distance of this many years, I can do it without being emotionally slayed. I've always wanted to write about our life with Lis. The blog format is perfect - I can do it in these bits and pieces...
    love you

  3. Martha,
    What a journey you and your family have had, my heart goes out to you and to Garry. None of us can fully understand what you each have been through as individuals and as a family.
    Lisbeth has such life and raw talent in her designs you must be so proud of her.
    Martha you have my prayers that God in his infinite mercy and his unending Love will continue to bless each of you to his or her own needs, and will give you just what you need to just live in the wonderful way that you have chosen. Martha there is so much joy in your family photos and much more then that, so much love.
    And I think there was a famous person who once said "All you need is Love, Love is all you need".
    Take care my good friend,

  4. As Lis would say, Mmmmmmm hmmmmm. TRUE.
    Thankyou, Kevin. xo

  5. Martha, sharing Lisbeth's story with us teaches us as well and I thank you so much for that. It reminds us to be grateful every day for what good fortune we have. I'm so glad Lis has a true creative spirit and you have managed to help her to acknowledge and work with this. Good on you Lis! Life's blessings can be counted by the minute, not necessarily the days and weeks.