THE BLOG
03/18/2010 05:12 am ET | Updated Nov 17, 2011

Epilepsy: Holding A Volcano

My chest was to his back. My right leg was thrown over his right hip. At first he made a smacking noise with his lips, as if a cow was chewing his cud beside me. I thought I heard him ask for something. I might have just been falling to sleep myself. But this mouth thing caught my attention. My arms tightened around him. He started to shake. I thought, "Is he having another one?"

"I'm right here with you baby." I held him even tighter. He'd told me to hold him tight if this ever happened when we were together.

Then the lip smacking became a gurgling. Was he throwing up the Buffalo Chicken foot-long Subway we'd just consumed an hour earlier. "Don't worry, baby. You aren't alone. I'm here. Breathe." For me, holding him as this great force overtook him was like trying to keep a hot air balloon on the ground as invisible tethers evaporated.

I was scared. Yet, I was fascinated as well. It's kind of like slowing down to see why all the flashing lights are on the other side of the freeway at night. It's dark. You can't really see anything but you know something big just happened. Only in this case, it was happening. I was in the car on the other side of the road. I wasn't the driver but I was holding the driver. Only my boy wasn't driving this vehicle that was now thrashing and flailing in my arms.

It seemed that minutes had already passed. I felt him struggling to get away from me. He's made of muscles, lifts fifty pound weights at home a couple times a week, is in great shape. I knew he wasn't conscious of what he was doing. Could he hurt me? I didn't smell any chicken. Suddenly he was spurting again, trying to catch his breath. There was much moisture in the air as he gasped and chortled. My friend Angel told me she was always afraid she'd swallow her tongue, even though she intellectually knew it was impossible.

I felt his right arm. It was hard as a rock. Shaking like a concoction in a lab's test tube, held over an open flame. "I'm here baby." I reached in the dark to touch more of his body. His heart was pounding as if he was running a 200 meter dash. Maybe it was a marathon but this wasn't the heart beat of a slow and steady jog. Sweat was all over him.

Then he tried to come towards me. In the dark it felt like he was trying to get up. He'd told me this morning that he kept trying to get up but couldn't get up. It's as if he was trying to reach above me to grab hold of something. "You're ok. You're safe."

I decided to turn on the bed side light. He was on all fours. He looked at me as if he was a lion trying to protect his cubs. He looked angry, but I knew he wasn't. "Lay down. I've got you." He collapsed. Suddenly he was breathing as if he couldn't get enough air in. I put my hand on his heart. This went on for at least another ten minutes.

Finally I heard him grumble or murmur, I'm not really sure what it was. "Sorry." I kept stroking his forehead. He seemed to be calming a bit. Like the run was over and he was just pacing not to lock up. But he still wasn't back.

Another five or ten minutes later he said, "What?"

"You had another seizure." I said still holding him tight in one arm while massaging one of his temples with my other hand.

"No. Don't say." I wondered if he knew what he was saying. He still wasn't himself. He opened his eyes. He stared at me. Then he looked away and seemed like he was about to cry. But he didn't cry, he was still gasping to catch his breath. His body was still taut, sweaty, shaking.

Ten or fifteen minutes after that, we started to talk about it. He said he'd heard me talking to him. He said he couldn't control it. I said, "Maybe you're not supposed to control it. Maybe you're just supposed to relax."

"I can't relax or not relax."

We talked for awhile. I massaged both temples and got him some Ibuprofen because his head was throbbing and his body was sore. I told him I was glad he'd released his bladder before he took his medicine and got in bed. I wasn't trying to be cute.

"Are you going to leave me?" he asked. "I'm sorry you had to see this."

We talked more about what he felt and how strong this one was compared to the one he experienced earlier this morning. Two epileptic seizures in one day after eight months without a single one. His dream of being able to drive again, to have his independence, to get his job back, and be "alive" again dashed like a boat against the shore with no lighthouse protecting him in the fog.

I put a cold pack over his forehead and massaged him till he fell asleep.

He's had epilepsy for over fifteen years. He lost his license and his job fifteen years ago. Medicare says he's not "disabled enough." He has no insurance because after rent he has three hundred dollars per month on which he keeps himself alive. He goes to the free clinic every three months to wait in line for four hours to see his doctor and get his meds.

This is how a man who was Varsity all three years, MVP'd often, who then drove heavy machinery fifteen years for a city he loved, fell through the cracks. He's not disabled enough to receive any help from our government. This is the land of the free and the brave? I don't think so.