Hope is the thing with feathers that perches on the soul. - Emily Dickenson
Five years ago, a doctor told me that if I did not get my seizures under control, there was a good chance I would die before I was fifty.
I was thirty-six at the time. I had been living with epilepsy since I was 18-months-old and, although they had become increasingly intrusive on my life, I had never considered that I could die from them. Wasn't just having epilepsy punishment enough? I thought.
At that time, I was having one or two tonic-clonic seizures a month and one partial complex seizure. There did not seem to be any pattern to them except for time - about every ten days my seizure clock went off and there I was again, on the floor, on the bed, on the neighbor's yard, my young children screaming for help while I seized.
Having a seizure was almost a relief: I knew that I could count on my brain for another week. I had a Get Out of Jail Free card for seven days and then the anxiety would return, the storm would grow on the horizon until it broke in my brain.
The neurologist referred me to the Cleveland Clinic for a pre-surgical work-up. This entailed a stay in the EMU, SEEG monitoring and brain mapping.
Away from my family for five weeks, in a hospital bed in Cleveland, Ohio, in the middle of February, I vacillated between anger, hope, frustration, hope, loneliness and hope. The doctors in Cleveland recommended an ablation and in May 2017 I had a frontal lobe laser ablation.
Maybe I can be seizure free, I thought as I rolled into the OR. This could be it. This was not it.
The ablation interrupted the network, but my seizures returned six weeks later. They were different, less severe but still on schedule. No longer having tonic-clonic seizures, the recovery was easier but the limitations remained.
Epilepsy, I have found, puts one in an invisible cage - the more frequent the seizures, the smaller the cage. Seizures take away the ability to drive, to socialize, sometimes even to leave the house. They make you dependent on others in ways both practical and intangible: I need help getting the children home from school and a shoulder to cry on after a post-seizure injury sends me to the ER.
I kept looking for the keys to my cage; the ablation had not unlocked the door. While doing research on new epilepsy treatments, my husband stumbled upon the RNS. We asked my neurologist at the Cleveland Clinic if he thought I would be a candidate.
My seizures arise from three areas in my brain, two of which are inoperable. In all the testing, it is unclear which area if firing first, which is the pacemaker. Sometimes, it seems that two are firing at the same time, within a millisecond of each other.
The RNS can currently handle two leads, but my neurologist thought that I could be a candidate. He suggested that I go to UCSF for the surgery, as an RNS implant requires follow-up every two months for the first year and San Fransisco was closer to Portland than Cleveland. Hope returned.
The team at UCSF decided that they did not have enough information to place the leads from the RNS accurately and wanted to place an inter cranial grid and conduct further brain mapping. COVID hit; the world shut down; non-essential surgeries were postponed and inter cranial monitoring was deemed non-essential. But, my seizures were getting worse. For me, it was a race against time and time was of the essence.
In July 2020 I went to UCSF. Within five days, I had six seizures in the EMU and the team was able to place the RNS device. They turned on the stimulation and we waited. I am recovering from a seizure as I write this. However, it was a smaller seizure than it would have been twelve months ago, without the RNS, a short simple partial seizure versus a severe complex partial seizure.
I am not a woman used to losing and I know that I will fight these seizures to the end; that there are no lengths that I will not go to end this cycle in my uncooperative brain. I also know that there is only so much I can do. Look, my husband says, it's getting so much better now. We just have to wait.
Mommy doesn't really have seizures anymore, my children tell their friends. She has a computer in her brain that makes them stop. Just give it time, my neurologist at UCSF tells me.
We are still in the beginning stages. What I hear when I put all of these pieces together is that I need to have patience. What I hear is that there is hope. I hear that there is still more to do, but things are better. So I quiet the part of my brain that is yelling BUT I WANT IT NOW! and wait.
Tomorrow is one day closer to seizure freedom.