Remember

March 22, 2016: I fidget in the waiting room chair, looking around at the magazines sitting on coffee tables. This Neurologist’s office is a painful pinch of why we have to be here in the first place. New city, new doctors, and today is EEG day. Why? Because Kevin’s twitching keeps me up at night, and the new doctor wants to change his medication. Sometimes his body jerks suddenly and my eyes spring open, only to see him sleeping soundly. There was a point where I could time his twitching to every 20 seconds. Twitch. Deep breath. Leg movement, then nothing. I would watch his back and count. Every 20 seconds he would twitch. Breathe. Move his leg and then lay still. His condition is under control and even invisible to the world around him and often himself, but not to me. He was unconscious, but I was there. I remember.

From Kevin’s first months on this earth, he suffered from seizures. His mother cradled a tiny pink-fleshed little boy as his left side shook for thirty minutes. A four-year-old sister peered in and felt the fear perspiring from her parents. When chicken pox struck him later and a fever broke out, the seizing returned. Hospitals and medicine cured a seemingly temporary medical issue, but not without impairing Kevin’s ability to verbally mature. Randy and Diana couldn’t bear to watch any more children suffer, so they made a tough decision. Their family was complete with their two kids.

The volcano remained dormant for several years before bubbling up to the surface again in Kevin’s teen years. Suddenly it was a daily occurrence. His lips whispered the secret to few listeners because of its strange yet harmless symptoms. His chest would fill with heat and an unknown force would close his eyes and draw his head downward. His body tightened and relaxed several times in mere seconds, but he would always remain conscious. When the “spasms” came at night, they always drifted him to sleep.

August 2006: As he went off to college in Tennessee, the daily spasms came in waves during the daytime but then would disappear for weeks or even months. Their intensity increased significantly. Now they came not just at night in the comfort of his room, but during class, dinner, and campus events. Kevin could sense the coming spasm and reject the outward demonstration so that no one noticed. He finally worked up the courage to tell his parents, and over the summer he was checked out by a few doctors with no results. Nobody really talked about this “thing,” because it was a mystery. It didn’t make sense, but at this point it was still seemingly harmless.

August 2008: We started dating, and he gently let me in on his secret. Occasionally, his hand would grip mine tighter than normal, and I would watch my boyfriend tuck downward; shriveling into himself with a slight tremble. Five seconds later he looked up at me with a red face. But always a slight smile. The warm feeling in his chest was something he had grown accustomed to, like a friend stopping by to visit. This was his normal.

September 2009: I was ironically at the hospital with a friend when Kevin’s name scrolled across my phone. I stepped toward the automatic door, and flipped the phone open to answer. The balcony above blocked the sun rays from dipping down to touch my face. I heard a familiar voice beckoning me for help, but my understanding was clouded. I struggled to grasp the words and hold them firmly in my hands.
“Kim, I don’t know anything. They found me and are asking me questions, but I don’t know what happened.”

“What? What do you mean you don’t know anything?”

“I can’t remember anything. I don’t know what happened. It’s weird.”

I snapped my phone shut after promising to come see him as soon as I could. I went to check on my friend and pulled back the hanging curtain to let her know what happened. What did happen? My head felt blank. Kevin was lost, and I needed to get there to help him.

I walked up to his desk in the seminary office and found a small crowd. They were asking him questions, and he sat there—confused and helpless. His co-worker Andrea had found him staring at his computer, not moving. She knew something was wrong. His RA came in and asked Kevin what sport we play outside on the greens every day. Kevin stared at him. At me.

“Football?”

My mind fainted. NO—we play Ultimate Frisbee almost every day together! How does he not know? I knew something was terribly wrong. Andrea looked at me with worried eyes. “I was so scared that he wouldn’t remember you.” My breathing was shallow. His memory had tripped and fallen, but at least he remembered me.

His parents picked him up and rushed him to Atlanta for tests. I spent four days on campus telling everyone who asked that he went home for the weekend. The pit in my stomach grew, and I wondered what we were dealing with, wondering what the doctors would find.

Jack squat. That’s what the doctors found. They couldn’t figure out what was happening, even when he had a spasm right in front of them. We had set sail on a journey but couldn’t even make it out of the shallow water.

College life resumed. Busy, busy, busy days. A ring appeared on my left hand, and on graduation day we ran away to Dallas, Texas to begin seminary. The spasms continued but only every couple of months. However, the memory loss returned with a sharp bite. The once physical problem was now messing with Kevin’s mind in a scary way. After a spasm in the middle of the night, he would reach for any thread of knowledge about his life and found nothing. He would hold me and in stark confusion ask simple questions. “Where are we? What classes do I have tomorrow? What day is it? What phase of Ph.D am I in?”

I would repeat the same answers over and over again.

In the morning we would discuss the details of his day, and his memory crept back in after abandoning him. I left for work on those days a bit concerned that he would lose his way, but he managed.

June 2013: We packed up Aaron and Kristine’s car and hopped in for a 9 day trek to the Grand Canyon and back. We hiked gorgeous trails, threw snowballs at 10,000 feet, shimmied through tight openings, clung to chains in difficult terrain, counted a billion lizards, and stood within arm’s length of moose. We raced to arrive at the Grand Canyon before sunfall, and watched the burning glow disappear behind the massive sheets of orange rock. All Kevin will forever know is only what he sees in pictures. Spasms and disorientation plagued that week, and the lack of sleep proved to be a major component. At one point we were hiking through skinny slot canyons when his sweaty hand grabbed mine. I knew what was happening, but our friends were scared as they tasted the bitter fear of the unknown for the first time. We looked at them with understanding eyes.

Kevin was gifted the rare opportunity to visit Bryce Canyon National Park, Zion National Park, Grand Canyon National Park and many others. But his memory has permanently blocked out 70-80% of that trip, and there is nothing we can do about it.

While his symptoms had progressed over the years, we really had nothing to show for it. We had no idea what would happen next. But soon, it all would make a little more sense.

Nov. 7th 2013: Kevin’s violent shaking woke me up at 2:54am. I immediately reached for his bare shoulders and pulled his head away from the wall. I rolled him on his side and instinctively patted his back. Seizure. Grand mal. Thick, foamy saliva oozed from his clenched mouth. He was unconscious but breathing. While my baby dreamt, I held his shuddering body and flipped through the little knowledge I had learned from my dad’s medical career. The shaking stopped after 20 seconds, but it wasn’t over. His throat choked up, and he started grunting and snorting. I wondered if he couldn’t breathe because of his mouth guard, but decided against taking it out. Soon all fell silent, and I bounded off the bed to grab my phone. I called 911. The dispatcher walked me through the aftermath, asking me questions about Kevin. I told her that maybe paramedics didn’t need to come because he was breathing. To be honest, I was proud of what my Dad had taught me and I thought I was handling the situation well. I knew that Kevin was okay and I thought that was enough.
 
But then she suggested that I try to wake him up. I called his name and pushed on his back. Nothing. My scratchy voice got louder and I pushed a little harder; he slept on. Suddenly, I felt awful. The calmness fled, and the simple fact that I couldn’t wake him up paralyzed me. “I-I-I can always wake him up; he’s not a deep sleeper. I should be able to wake him up…” Tears sprung up for the first time and I didn’t know what to think. The dispatcher held strong amidst my fear, and her strength carried me across quiet waters.

Three men left their stretcher at the door and followed me into the bedroom. Their thick jackets and sheer height filled up our hallway with a powerful presence. I felt so small. “I can’t wake him up.” The lead paramedic walked right up to Kevin’s bedside, placed his rough hand on one shoulder, shook once, and bellowed, “Kevin!” I jumped on the bed next to Kevin as his eyes sprang open, and he flew backwards in surprise. “Woah!” Kevin yelled. I told him what was happening, but he was too startled and tired to make sense of the strangers in his bedroom. The men poked his finger. They emphatically told me to get him checked out immediately, because the spasms he had been having were indeed small seizures. They told me what medicine he would be prescribed. The fog thickened, and I just nodded and tried to listen to the unfamiliar jargon droning from their lips.

I don’t know how I managed to fall asleep after the men left, but morning came, and I texted my co-worker in exhaustion. Kevin was dressed and ready for his class. “Are you sure you want to stay home? I am feeling okay.” I smiled weakly. “We have a lot to figure out. I don’t want to leave you yet.” But was it me who didn’t want to be left alone? This was a normal day to him. I sat on the couch and looked out our apartment window to the campus below. I watched with tired eyes as he crossed the street, walked the beaten path, and disappeared behind the library. I thought about last night and the way my world flipped upside down in an instant. I remembered the patient dispatcher, her sweetness, and the way the paramedics diagnosed him so easily. My mind strained to remember the medicine he had told me about. I couldn’t. The madness had drifted away, leaving salty drops to trickle down my cheeks and the weight of it all to be felt for the first time.

Kevin had another spasm in the car as I drove us to the doctor that afternoon. We skyped with his parents, and they took the news well. Diana planned to drive out to us in a few days. For the next two weeks she took him to appointments and sat through tests so that I could keep working. She cooked us dinner and tried to keep busy; walking miles at the park and probably praying a hundred times a day. I am sure she had flashbacks where Kevin became her little boy once again. Helpless and sick in this cruel world. I hate that those painful memories sprung up and haunted her once again.

After all the testing, we had an official diagnosis. The neurologist said his brain is very active at night, and there are parts of his brain that are “seizure-prone.” Without proper medication for the rest of his life, he is likely to have more seizures. Kevin’s family finally had their answer after years of confusion, and Diana was able to go home with an answer after years of confusion.

Seizure medication can bring depression and unfortunately, Kevin was no exception. We laughed at the first mention of “irritability” as a side effect, but it soon proved to be a battle we would fight. It took almost a year for us to pinpoint these side effects and search for a solution. Buying a dog as a companion would have made sense in this situation, but our apartment forbade all animals except birds or fish. So Kevin bought a turtle. We named it Toby, and hilariously, this small reptile and its strange daily behavior became exactly what Kevin needed. Toby was Kevin’s pick-me-up, his serotonin. Who would have thought?

 

Our four year phase in Dallas ended after mounds of trouble with his dissertation. He stumbled through his work with foggy memory, but he was able to finish most of the Ph D. program. Finishing his dissertation is on the back burner for now, and he is working as a High School Bible Teacher here in Clermont, Florida. 

I honestly don’t think about Kevin’s condition much. Only when I hear of others suffering with the same thing and I quietly feel their pain. In those moments I am snapped back to that night and my uncomfortable experience. Only because of his grand mal were the doctors able to diagnose and treat him. All those years of struggling have brought him to a better place today; physically and mentally. I dare you to ask him what he has learned through it all. Ask him what he thought when the very thing that gained him two Valedictorian honors, a master’s degree at twenty-one, and a Ph D. status was stolen away without his permission or control. He reevaluated who gave him that gift in the first place and how quickly his mind can be ripped away.

I don’t like the word seizure. Just like nails on a chalkboard, knives, and CSI; it creeps me out and makes me shudder and want to run away. I don’t talk about what happened to Kevin because I just flat out don’t like it. I’m sure I never will. But it could be worse, and I know it. It’s what we have been given, and I have come to terms with it and feel at peace. My dad has told me, “Of all the physical problems to have, this is not the worst.” I trust him. Kevin and I know that we are blessed, and we do not take our lives for granted.

PS- Kevin has since graduated from one turtle to three, a pond in the backyard, and two bunnies. I never thought I would feel like we are running a zoo, but it’s all good. Whatever makes him happy.