For most people, nightmares occur during a deep slumber. The nightmare is usually bizarre, graphic and horrifying, and the person wakes up in a cold sweat. For me, my nightmare began the moment I woke up one Saturday morning in May.
The right side of my face was burning and buzzing, like someone put my ear in an electrical socket. Spikes with electric current were sawing through my jaw, and my cheekbone was throbbing. I knew I must still be asleep. I thought if I could just force my eyes open, then I would wake up from this psychedelic nightmare. I could see the ceiling from my left eye, but I couldn’t open my right eye. In a panic, I reached for my right eye to force it open, but the mere touch of my hand to my eyelid caused an electric knife to stab me in my jaw over and over again. With one eye open, I fearfully realized that this was not a nightmare. This was reality. What I didn’t realize, however, was that this nightmare would be my life and that waking up in a cold sweat was just a dream for me.
For weeks, I went from doctor to doctor. On the way to each visit, I covered my face to protect it from the wind and applied pressure to my cheekbone to relieve the pain. With each doctor’s visit, I received a different diagnosis. First, I had streptococcus. Then, I had a sinus infection. Then, maybe at the age of 29, I was getting my wisdom teeth. Finally, in a sheer state of panic and with the urge to tear my face off, I went to urgent care.
There, the doctor listened to my symptoms, taking notice of how I carefully kept the hair off my face. With a cotton swab, he touched points on the right and left sides of my face. Each time the swab moved in slow motion toward the right side of my face, I held my breath and awaited the torture. After his examination, he calmly stated, “you have a neurological brain disorder called Trigeminal Neuralgia (‘TN’).” Wake up. Wake up. Wake up!
I insisted he was mistaken. There was no way that God would give me TN, “the suicide disease” after giving me a neuromuscular disorder, which has confined me to a wheelchair since the age of eleven. Was I the modern day Job? But, the doctor was not mistaken. The following week, my neurologist confirmed the diagnosis. As I left his office with tears streaming down my face, he said, “Don’t worry. You’ll be able to smile again one day.” I tried to thankfully smile in his direction, but a sharp electric stab to the cheekbone reprimanded me.
I returned home distraught and immediately went to bed, in pain and despair. I prayed from my bed and sang “Ana Bekoakh,” the prayer, which begs God, “with the strength and greatness of His right arm, to untangle [my] knotted fate.” But, with each day, I felt increasingly lost. I needed a blueprint for how to live through this nightmare, rather than die in it.
I reached for the Bible and turned to Job. Job was a wholesome, upright and God-fearing man, who shunned evil, but God tested his faith. Job’s servants, sheep and children were killed, and later God afflicted Job with severe boils, from the soles of his feet to the top of his head. Initially, Job said, “…shall we accept the good from God and not accept the bad?” However, ultimately, the suffering became too great, and Job cursed his birth, complained of his pain and became angry with God. While Job never blasphemed God, his friends tried to convince Job that he must have sinned or done something to deserve this fate.
In the end, God did not punish Job for becoming angry with Him. Indeed, God restored Job’s wealth until there was double. God’s anger, however, was with Job’s friends, who attempted to explain God’s will. God proclaimed in Job, “Where were you when I laid the earth’s foundation?” From this, I learned that there is no blueprint for tragedy. Who are we to understand God’s will or God’s plan? Who are we to understand why we are subject to tragedy, persecution or terror? Who am I to figure out why God gave me this horrible disease?
I began the prescribed regiment of anticonvulsants. My body was spinning. The world was moving from right underneath me. People had two sets of eyes, and when I moved my eyes, I saw traces of everything. Due to the dizziness, the simple task of using the toilet became close to impossible for me. I lay in bed, alone, high on Percocet, living in some real-life version of “Alice in Wonderland,” and could do nothing but pray and hope for painless sleep.
Doubling the drugs every other day made the side effects worsen exponentially. Life felt more like dying than living. A few days after beginning the drug therapy, I found myself on the toilet with a fever, vomiting, crying and unable to get up. I refused to fall to the bathroom floor with no one to rescue me. So, I called for help, and, with all my might, I lifted my lifeless body off the toilet.
Soon thereafter, a colleague found me half dressed, covered in vomit, and hunched over the side of my bed, with my head in a garbage bag. The pain in my face was gone, but my soul was in pain.
The paramedics took me to Hadassah Ein Kerem in Jerusalem. One person after the next stuck me with needles, trying to draw blood and start an IV. Each person had less success than the last. Surrounding my bed in the hallway of the emergency room were Arabs, Christians and Jews. Some were screaming. Others were groaning. I was silent. I didn’t have the strength to make a sound.
I was admitted to the Neurology department. On either side of and across from me were stroke patients in comas. Alone, I lay in my bed and listened to their families cry at their bedsides.
The granddaughter of the woman next to me visited every day and said repeatedly, “Kumi, Savta. Kumi.” (Wake up, Grandma. Wake up.) With no family of my own there, I felt as though she was my own grandmother. I watched her in her bed, marked with a numbered tattoo on her wrist, and I whispered, “Kumi, Savta. Kumi.” I prayed that just as Savta survived the holocaust, this, too, she would survive. But, Savta never woke up.
The doctors quickly took me off the drug and began a new drug therapy. The vomiting resolved, but the pain returned with a vengeance. Every few hours, I sat upright in horror. With my mouth slightly ajar and my eyes screaming in pain, I begged the nurses for narcotics. The inability to move my mouth and the language barrier delayed pain-relief, as the electric currents sliced through my face with shocking power. The narcotics only dulled the pain and lowered my spirits.
Every day, the doctors increased my dosage, and each day, I became more and more drugged and incoherent. Colors were fascinating, and I would stare off into space. The sharp mind of an attorney I once had was gone. And, the real-life version of “Alice in Wonderland” had returned; only this time, I was still in pain.
On a Friday evening in the hospital, electric bolts singed the right side of my face and forehead. My mouth was open, and my eyes were wide open in horror. I couldn’t self-sooth with my hand, because I would inflict more pain upon myself. My mom, who had come in from the states, rapidly pressed the nurses call button, while my new, livelier, neighbors looked on in sympathy and dismay. Percocet. Tylenol. Gabapentin. Intramuscular injections of anti-inflammatory. Nothing helped.
My mom was helpless to resolve my pain. So, in tears, she lifted me and put me in her lap like a 3-year-old. Amid the pangs of a TN attack and with the left side of my head pressed up against her heart, I sang the prayers welcoming in the Sabbath. Together, we sang Shalom Alechem, and then, for the room, I made Kiddush.
Unable to resolve the pain with the newly presented drug therapy, the doctors decided that my pain was psychosomatic. My doctor ruled that my immigration to Israel two years prior was one step too much for me, and, thus, caused my psychological pain. I was on tranquilizers and sent to a hypnotist, who instructed me to move a stone with my thoughts.
When the MRIs revealed no tumors or lesions, the hospital prescribed me anti-anxiety medication, tranquilizers, instructed me to see a psychologist and sent me home in excruciating pain. The nightmare reached new depths of terror.
In terrifying pain, I went home, only to watch my life spiral and fall apart. I tried as often as I could to go to the psychologist, for the rare possibility that the pain was actually psychosomatic. But, as the pain progressed, I was unable to make the appointments.
The pain rapidly worsened, and attacks came more frequently. Eventually, I became afraid to leave the house, for fear that I would suffer an attack. I avoided anything that would trigger an attack, including: talking, smiling, brushing my teeth, washing my hair, chewing, wearing scarves, going outside, applying makeup, wearing jewelry, drinking cold and hot drinks and wearing my glasses. I learned how to chew from the left side of my mouth. I didn’t answer the phone to avoid talking. I lived life only to avoid it.
I lost my job and any means to support myself. I lost my appetite, from the anti-anxiety medication. I quickly lost myself, my life, my achievements…my spirit. TN ruined my life.
As the pain worsened, I became angry with God. On Rosh Hashanah, the Jewish New Year and my favorite days of prayer, I couldn’t get out of bed to go to synagogue because of the pain. Instead, I yelled and screamed at God. Why me?! Make it stop! Give me my life back! Wake me up from this nightmare! But, by Yom Kippur, while I fasted, I had given up the will to yell and scream or pray. I just lay in my bed…silent, awaiting those pain-free moments of sleep.
Each day, I would wake up pain-free, but I knew it would only be seconds, minutes or maybe an hour before the torture would begin. Soon after awakening, my life was focused on pain – how to get rid of it, how many drugs to take, how to breathe properly, how to prevent it from becoming catastrophic pain. I didn’t worry about the next day or how I was going to pay the rent or survive financially without a job. I worried about the next hour or the next minute and about the impending torment I would suffer.
I became malnourished. I lay in my own sweat. I scratched off my skin from the Percocet. My hair was uncombed, my teeth un-brushed. Terrified of the shower, I went days without showering. My back and sides were raw from lying in bed all day for months. I wanted comfort, and, yet, I was ashamed of what I had become. So, I retreated from my friends and my community, further alienating myself.
My life wasn’t life anymore. It was no longer worth living. I dreaded the next day, the next hour, the next moment. Every night, I hoped I wouldn’t wake up the next morning. I was hopeless.
After seven months of chronic pain, I moved to Jaffa to live with family friends, who took care of me. One night, I had been suffering from an attack for six days straight. I was sleep-deprived from the pain. I needed relief, and I needed sleep. I no longer cared as much about life as I did about pain-relief. I took one Percocet after another and one tranquilizer after another, caring not what the outcome would be.
The next day, I woke up and in pain for the seventh day in a row. I emailed my neurologist, desperate for help, but his response was, “This is all psychological.” I reached complete and utter despair. The attack fiercely struck for the seventh day in a row, and I finally capitulated to the suicide disease. I had my first suicidal thought. I considered exactly how I would kill myself and end it all. And, then I remembered, “Where were you when I laid the earth’s foundation?”
Who was I to give up on this life and on this test? Who was I to control my own destiny, when only seven months prior I was pleading with God to untangle my knotted fate? Ecclesiastes teaches us, “Do what your strength allows.” So, I asked my friends to take me to the emergency room, and while I waited for them to pick me up, I sang Ana Bekoakh again.
I was admitted to Ichilov hospital’s Neurology Department for 11 days. The doctors never once told me it was psychological or psychosomatic. They were determined to end my chronic pain and help me regain my life. They tried different drug treatments and cocktails, introducing strong preventative anti-nausea medication. For days, I lay in bed in pain and vomiting, but I was praying again.
On my last day in the hospital, when the doctors made their rounds, I was a different person. I was out of bed, showered, clothed and reading a book. My doctor looked at me and said, “You’re like a flower that has bloomed right in front of my eyes.” I was so elated that I smiled. I could smile again.
My first day out of the hospital, it occurred to me that I had my glasses on, my headphones in, a little girl snuggled up to the right of me, and I didn’t have pain. I wept because I forgot what being pain-free felt like. I finally woke up from the nightmare and the darkness of TN.
Later, I went with my friend to have lunch by the sea in Jaffa. As I sat next to him on the grass, I brightly smiled. He was intrigued as to what made me so happy. I explained, “I’m outside, and the wind is blowing! I’m wearing a scarf and earrings! I’m chewing and talking and smiling!” What most people take for granted, I cherished.
Today, while I am not pain-free every day, I am finally living life again. I often fear that the nightmare will return, but smiling, chewing, and feeling the wind on my face are little treasures throughout my day. God has surely doubled my wealth.