I DID IT

“Hey sweetheart, mom just got out of surgery, they said she’s going to be just fine,” I remember telling my wife vividly. I had just finished my cardiothoracic residency, and our two daughters were seven and five years old then. For so long, I had struggled. I yearned for the day it would all work out, and finally the day had reached. Haha! I remember after that my wife screamed, “OH THANK GOD LETS ALL GO OUT.” She invited everyone, and I mean everyone, even offered to pay for the less fortunate ones. That was probably the best weekend of my life. God, we had fun.

“Hey, baby, I can’t sleep.” My wife woke me up on that fateful day. It was on January 26th, the day that marked the onset of her condition. However, I only came to understand that later. “Just go drink some water, sweetheart, it will be all right,” I told her. A few days passed, the insomnia had subsided for a while, all was well. Or so I thought.

“Violet, Violet, Violet!” my wife shouted while clearly staring at our firstborn, Aileen. Her words slashed through my heart like a blade. “No, it can’t be, not her,” I said to myself. The smartest person I’ve ever met, the brightest mind I’ve ever encountered could not, no! should not have been confusing names like that, especially not her daughters’. “Insomnia, confusion, what on earth could it be?” I thought as we rushed her to our neurosurgeon, a dear friend of mine. “It’s too early to say anything. Kindly call me if the symptoms get worse,” he said.

A few prayers, a few precautions and then we continued living. I kept a very close eye on her, sometimes, regrettably, neglecting our daughters. No, it was not neglect, their mother needed me more. Her health never returned to its peak. Her condition worsened with each passing day. I had to take a break from work, from writing, from everything. “We know what’s affecting your wife,” the neurosurgeon started. I hopefully stared at him, wishing, begging, but most importantly, praying that it was a curable condition. “She has fatal familial insomnia.” To this day, I’m not sure whether he spoke another word after that or not. All I remember is collapsing to the cold hospital floor. I could no longer see nor hear. Then I cried. Oh God I cried. “Of all the neurological disorders, why? Why this?” I thought. The following days were a blur to me. All I know is that I closely stayed by my wife’s side, never once letting her leave my side.

Emotionally, I was not strong, and neither was my wife. We would put up a facade when talking to everyone else, our friends, colleagues, and most importantly, our daughters. However, only we knew our true emotional state. She would cry in my arms as I would in hers. Oh how I wish we could rewind time; I yearned for the days gone by. We had always been staunch Christians before her diagnosis, but after it, our faith increased even more. We prayed, we read the Bible, we fasted, we donated. Anything, anything that could have been done, we did. She then rapidly lost weight, but what hurt even more was her dementia. Slowly but surely, my dear wife forgot chunks of information.

“Don’t worry sweetheart, you’ll be fine,” I said.

“Who are you?” Were the last words my wife said to me before she fell into a coma. That was the last I ever heard of her. She passed shortly after, and on January 20th, almost two years after the onset of her symptoms, I laid my wife to rest. What followed after was the worst few months of my life. It got so bad that my mother had to temporarily take away my daughters, whom I had been severely neglecting, failing my fatherly duty. My heart couldn’t take it; nothing brought me peace. I cried. I screamed. I shouted. I cursed the world. I cursed the entire medical field at its ‘incompetence’.

“I have lost my wife, my daughters and my sanity! What am I supposed to do, pastor?” I shouted.

“Just continue seeking the Lord your God and all will be well. He will grant you peace.” He replied and with that marked the end of my faith. Seek him? That’s exactly what I was doing till my wife’s demise. I immediately renounced Christianity and continued on my never-ending search for sanity.

“Yes, I want the kids back. Don’t worry mom, I promise I’m good.” My daughters were back, and so was my job. With all these factors present, I could run from the storm within. I could evade my feelings. I could lie to myself that once again all was well. For a while, things were starting to look okay again, albeit sometimes the grief would come back, however, I was trying. A few days turned into a few weeks and now a year and a half had passed since I lost the love of my life. Hesitantly, I had allowed myself to smile again, to laugh again, and fully care for my daughters. “Yes, all is well, my wife is also, she… She is dead.” It was as though I was losing her for the second time. I didn’t understand what was happening or rather, I refused to accept. I hadn’t it completely healed, because I ran away from the grief. I kept it hidden in a locker and threw the key away and just when this realization was hitting me, my phone started ringing.

“I am so terribly sorry.” My mouth moved, but no sound left it. “Aileen has sadly passed away in an accident, her school bus hit a lorry, leaving no survivors.” A single tear rolled down my eye. My world had once again been shattered, and this time the cracks reached the innermost parts of me, completely obliterating my very sense of self.

“Peace doesn’t exist, does it?” I calmly told my psychiatrist as I walked out of his room. Quickly, I rushed to the balcony and stood on the ledge of the seventh-floor unit.

“This life isn’t worth living,” I thought as I stared at the cars below. The psychiatrist and his nurses came rushing.

“Please, think about your family, your daughters,” he said.

“They are dead.”

“All of them?”

“No. Violet wasn't in the car crash.” That's right, my Violet is still there. My baby, I'm so sorry, dad is coming. The news devastated her. She's the only reason I'm alive, I constantly thought. My mother permanently moved in with us, to help us however she could. Unlike with my wife's passing, this time it didn't get better. Violet was the last straw I was clinging to, to stay alive. All passion, peace and whatever was left of my sanity was gone. What remained was a shell of a man who once lived.

When Violet was then also diagnosed with fatal familial insomnia, I simultaneously prepared my eventual suicide. I would hang myself the day she died. What I didn't know at the time was that her diagnosis was, ironically, the best thing that had happened to me in a few years. Neuroscience had exponentially improved in the years following my wife's demise. “This time, you won't lose her. This time, you will win,” my neurosurgeon friend told me. I completely broke down for the first time in a long while. He cried with me. I cried for my wife. I cried for my firstborn, Aileen. But most importantly, I wept for my Violet. “Could it be true? Could I finally win?”

She fought. The doctors fought. The condition fought back. However, the condition wasn't beating neuroscience this time. My daughter was cured. The first person in the history of the human race to be cured of fatal familial insomnia. Say her name! Shout her name! Let it be known: Violet Ngugi defeated the undefeated. Her recovery marked a turning point in our lives. We were rejuvenated. We would live again. We would indefinitely carry the memories of my wife and Aileen, however, we wouldn't stop living. It's now been a decade since she was cured, and although I hate admitting that I'm wrong, I was. Peace does exist.