As I sat on the floor where I had fallen into a puddle of spilled water, I remembered the neurosurgeon’s words that nothing could be done for me and that I would have to live with my condition.
How am I going to live in this never-ending nightmare?
I assessed my situation: Both eyes had turned inward toward my nose—the left much more pronounced then the right—leaving me with no peripheral vision. What I saw through my eyes looked chaotic and terrifying with two blurry images of my world—one image real and the other false. Sometimes the images canceled out what lay in front of me, causing me to trip and fall. Other times the images appeared far apart from each other, one above the other and to the left.
My head pounded with each beat of my heart. The unremitting pressure behind my eyes left them red and swollen. The adrenaline-induced dilated pupils, along with the protuberant right eye, looked like a caricature of someone in a state of extreme fright.
The phone rang repeatedly all morning, probably my friends and family trying to reach me to find out the results of the cerebral angiogram I had in Albuquerque the day before. I could not muster the energy to answer the phone.
With effort, I pulled myself up off the kitchen floor by holding onto the counter. My hands shook; I felt on the edge of fainting. Thinking that eating something would alleviate the weakness, I put half of the egg I had boiled into my mouth.
My newly acquired severe anxiety disorder left my mouth dry, without any saliva to moisten the food. I knew that high adrenaline levels make the mouth go dry and that I would have to learn to cope with a chronically dry mouth. I spit out the egg into my bowl, mixed it with copious olive oil and tried again to swallow the egg, this time successfully.
Pushing my luck, I tried taking one of my anti-inflammatory supplements. In spite of swallowing the capsule with a glass of water, it got stuck in my esophagus, a sign that the lining of my gastrointestinal tract had swelled, most likely related to the trauma inside my head. I got a slice of an overripe apple and chewed it up until it was the consistency of applesauce and then swallowed the mush to try and push the capsule down into my stomach. It took several mouthfuls of mush until I could dislodge the capsule.
From then on, I put my supplements into the blender with some coconut milk, along with a handful of nuts and berries, and then sipped the blended liquid ever so slowly each morning for the next few years until my intestines healed.
The intestines are sometimes referred to as “the second brain” because they have a significant amount of nerve tissue and make exactly the same neurotransmitters as those found in the brain. No emotion goes undetected by the gut. When the body is in a state of fight or flight, blood gets diverted away from the gut to the muscles, making digestion come to a standstill so that the person in danger can fight or take flight. I had no way to fight or flee from the saber-toothed tiger that lay right inside my own head. The high levels of adrenaline and cortisol held me hostage in a prison of unbearable anxiety.
The simple act of making breakfast left me exhausted. I lay down on the couch in the living room. The food felt heavy in my stomach as though it could not be digested. Within an hour I developed cramps from the food. After a few more hours came the diarrhea that occurred almost every hour. It was mostly water and undigested food. The diarrhea would be one of the many malfunctions I would have to learn to live with. For over a year, the diarrhea occurred up to eight times a day. Within a month I lost 25 pounds and weighed less than I did in high school.
Because the solid food I ate was only partially digested and often got stuck in my esophagus, I consumed most of my meals in liquid form—soups and smoothies—to keep from becoming emaciated. When I did eat solid foods, I had to eat tiny morsels at a time and chew them until they turned into liquid. Although I had always admired people who ate their food slowly and consciously, what I faced now felt like an extremely exaggerated version of what I had admired.
Almost everything I ate caused pain in my stomach and intestines. To compound matters, since I could not thoroughly digest what I ate, I had to eat small amounts of food constantly—every hour or two—or else I would risk fainting from low blood sugar. I learned to carry little nut butter packets and water with me at all times.
In the afternoon my sister, Veet, came by to check up on me. When she saw me, her eyes looked frightened and filled with tears. She sat on the couch and rubbed my feet as we both cried in silence.
Word of my condition rapidly spread to my neighbors in my co-housing community. One of those neighbors, Louise, came to check up on me. She had already begun coordinating another team of people to supply me with a steady stream of food for the next few months until I was able to drive again—as she had done when my leg was mending after the snowboarding accident.
The refrigerator remained stocked with dinners—mostly chicken soups—for many months. The guilt over receiving this outpouring of kindness and generosity—yet again—was something I had to let go of. I was too weak to worry about how I could ever repay the gestures of kindness.
Word spread around the larger Santa Fe community that something terrible had happened inside my head. Since no one understood what exactly happened—given the rarity of the diagnosis—people made up their own way to explain and visualize what had happened to my brain. Some told their friends that I had developed large aneurysms in my head, one of which had burst and that I nearly bled to death. A few people thought I had a malignant brain tumor. A rumor spread throughout the city that I had retired due to a stroke.
The phone calls and the stream of visitors overwhelmed me with both gratitude and exhaustion. Conversations required too much energy. And each time I told the story of what happened, I felt worse from the telling, with intensified feelings of anxiety, despair and hopelessness.
Christmas of 2008 arrived two weeks after I had come home from the hospital in Albuquerque. My community, the Commons, had its customary Christmas Day feast. My sister escorted me up to the common house to join my neighbors in singing and feasting. I kept my head looking downward, not wanting to frighten anyone by my appearance. I tried to smile when spoken to and went through the motions of eating, but couldn’t get down any food other than the mashed potatoes and the cranberry sauce. After Christmas dinner, Veet walked me back home where she conducted her own little ceremony for me. She tried hard to cheer me up with uplifting music and thoughtful little gifts, along with a head massage.
I went to bed early and, as usual, lay awake all night listening to the pounding in my head with each beat of my heart and feeling the vise-like grip on my stomach from the ever-present anxiety.
I felt profoundly alone and lost in an inner world full of terror—an aloneness that no amount of company could assuage.
I tried putting an ice pack on my head to reduce the pressure behind my eyes. In the middle of the night I pulled out my old CD player and listened to the sounds of ocean waves crashing onto the beach, hoping that the music would drown out the sounds in my head and mitigate the torture from the unbearable anxiety.
Most torture victims get to sleep at night—unless the torture includes sleep deprivation. I had no reprieve from the torture chamber in my head. When it was day, I couldn’t wait for nighttime to go to bed. When it was night, I couldn’t wait until the morning to get out of bed.
No matter what I did, I could not fall asleep. Night after night, month after month I lay awake all night. I entered into the world of the chronically “wired and tired.”
For the first time in my life I got to experience what it means to have PTSD with cripplingly high-levels of inescapable anxiety—interspersed with full-fledged panic attacks generated by the damage inside my brain.
I sent off a saliva cortisol test to determine what impact my brain damage had on my adrenal glands. The lab called me and said that there might be something wrong with the machine that had tested the saliva sample because they had gotten unusually high levels that exceeded what the machine could measure. The lab technicians reran the test three times with three different saliva samples. They had never seen such high levels.
Veet drove me to see the endocrinologist for some further testing. The catecholamines—the epinephrine (a.k.a. adrenaline) and norepinephrine (a.k.a. noradrenaline)—were extremely high. Dr. Sawyer wanted to make sure I didn’t have an adrenal tumor even though I assured her that the high levels of cortisol and catecholamines were from the brain damage.
For over a year, I had virtually no sleep because of the pressure and pounding in my head that caused the high cortisol and high catecholamines. My amygdala screamed out incessantly, “You’re in big trouble. Something really terrible is about to happen.”
The amygdala is a tiny, almond-shaped cluster of cells located deep within the temporal lobes of the brain. The amygdala is part of the limbic system, the region of the brain involved in emotions and survival behavior. It has one main job—to tell us if we’re in danger. Once the alarm goes off, the sympathetic nervous system—the system that controls the fight or flight response—gets activated. The body responds with elevated levels of catecholamines and cortisol from the adrenal glands, both of which cause a cascade if symptoms, including rapid heart rate, fast shallow breathing, elevated blood pressure, dilated pupils, stomach pains, chest pains, decreased ability to digest food, frequent urination and diarrhea—and fear.
All my detailed knowledge about the mechanism of PTSD and panic attacks did not help me feel better. I just wanted to find a way to turn off the amygdala—the incessant alarm that made me feel like something terrible was about to happen any minute. The structural damage in my brain and the visual distortions had caused the amygdala to fire without letting up—even for a minute. If I did not find the off switch, I would not be able to survive.
Some friends, anxious to help me, brought over their medical marijuana and encouraged me to smoke the dried leaves and eat the marijuana-impregnated brownies. The cannabis had a paradoxical effect and made me even more anxious. I don’t tolerate the THC—the component that alters cognition. Because of the mutated genes in my detoxification pathway, I am unable to clear the THC—so it becomes toxic to me. It would be a few years later that I discovered the benefits of CBD-enriched hemp oil—free of the mind-altering THC.
In desperation, I became an insomnia expert and learned every trick imaginable for inducing sleep—none of which helped me in any noticeable way. I tried the sedating herbs, amino acids and minerals, the Ayurvedic remedies, the Chinese herbs, the dietary changes, the sleeping pills, the soothing music, the mindfulness meditation, chanting, deep breathing, lying on a mat that produced waves similar to the waves of the earth, the white noise machines to block out the loud noises in my head, the eye mask to block out the light from the moon and stars, the hypnotherapy, acupuncture, Reiki, massage, distant healing, hot Epsom salt bath.
Suicide appeared to be the only sure way to get some sleep.
My friend, Sherie, let herself into my house through the back door several nights a week to give me soothing massages after I had gone to bed in the early evening. My neighbor, Ellen, climbed into bed with me and held me. She sternly told me to stop considering suicide as an option because of the devastating legacy it would leave for my loved ones. (Her words to me were prescient. Four years later her son committed suicide and turned her life upside down.)
My friend, Duija from Holland, also climbed into bed with me, positioning herself at the head of the bed so she could cradle my head in her hands and do gentle cranio-sacral work on me. My neighbor, Ann, gave me jin shin jyutsu treatments and read the Tarot to see what advice it had for me.
With the stream of visitors came a multitude of gifts, including massages, energy healing, shamanistic healing, sessions with “miracle” healers, Tarot readings, I Ching readings, psychic healings, osteopathic treatments, Somatic Experiencing, EFT, EMDR, and Brainspotting for trauma. A practitioner loaned me an electronic device to strap onto my head in hopes of healing the fistulas.
Nothing I did made any significant difference. Talk therapy left me even more traumatized from talking about my experience.
One of the innumerable presents I received was a gift certificate for a massage by a woman who specialized in terminal cases. As the masseuse talked to me while massaging me on her portable table in my living room, she repeatedly and lovingly reassured me that I didn’t need to be anxious because she felt absolutely sure that I was not going to die. After the third time that she earnestly reassured me, I told her politely that I was actually not anxious about dying. I was anxious about living in my current condition. I told her that death sounded like a sure way to get some peace. Thankfully, the kind masseuse remained silent the rest of the session.
My thoughts frequently went to suicide. In one of the online journals about mental illness, I had read that an average of 22 combat veterans commit suicide every day. I identified with the veterans from the wars in the Middle East who returned home with PTSD from traumatic brain injury—both mild and severe. I could understand the desperation they felt. Their behavior looked similar to my behavior. I lived in a perpetual state of irrational fear—fear of everything. Like them, my world became very small. I resisted going into public places for fear of a panic attack from sensory overload.
PTSD is like having a fire alarm going off in your head all the time, telling you that you are in imminent danger. There is no obvious way to shut off the alarm. The alarm is enough to drive one insane.
I considered all the various ways that people have killed themselves. In the early days of being a doctor, I had a married couple in my practice that resolved not to endure the indignities of getting old, like being incontinent and non compos mentis. They made a pact that, when they were ready, the husband would shoot his wife and then shoot himself. When the time arrived, the wife changed her mind and wanted to keep living. The husband went through with his plan and shot himself in the head while sitting in his wheelchair. The wife asked me to go to their home to pronounce her husband dead, per protocol.
During that home visit, I made a mental note that death by gunshot would not be the way I would choose to end my life. Nor was jumping off the Rio Grande Gorge Bridge outside of Taos. I couldn’t stand the idea of making a mess for other people to deal with.
By mid January of 2009 the weather turned bitter cold. I thought about hiking high into the mountains above Santa Fe and lying down in a remote place and freezing to death. Then I remembered that I could not get to the mountains on my own, given my visual impairments.
I tried out the possibility of starving to death but that plan lasted less than 24 hours because of the frequent visits by friends and neighbors checking on me.
The method that seemed most viable for me consisted of a combination of sleeping pills and narcotic pain medications. I began to stockpile the medications that a colleague had prescribed for sleep and for pain.
My friend, Forouz, called me every morning before she went to work for almost a year. She asked how I was doing, but I knew that she really wanted to know if I was still alive. Once or twice a week she brought me dinner from the Whole Foods Market before she went home at the end of the day.
One evening I had a panic attack for no apparent reason, most likely having to do with something gone awry inside my brain that scared my amygdala, causing it to fire to the point that I thought I was going to have a heart attack. The sedatives I had on hand did nothing. I went next door to my neighbor’s casita. Stefan had rented the casita to some friends of mine who were interested in experiencing what life at The Commons was like. I knocked on the door. My good friend and colleague, Bruce, answered the door. Gasping for air, I blurted out, “I’m having a panic attack, Bruce. I can’t bear it.”
Bruce had experienced panic attacks before when he had been incorrectly diagnosed with a fatal condition. He knew exactly what to do for me. He told me to lie down on the futon. He lay down next to me and held me tightly against his body. He asked me to breathe in synch with him. After about an hour my adrenaline levels gradually subsided and I was able to go home.
My Swiss neighbor, Stefan, came over frequently to sit with me in silence. Sometimes he held my hand, other times he held me in his arms as I cried. Stefan actively practiced Buddhism. He taught meditation to prisoners at the penitentiary outside of town and had a healing practice called “sensory awareness,” that essentially helped clients get into the present moment.
One time when Stefan came over to sit with my on the couch, I confessed to him, through tears of exhaustion and despair, that I could no longer endure the suffering, the lack of sleep, the anxiety, the panic attacks, the visual distortions, the gut pains, the pressure and pounding in my head. He sat and listened with unflinching compassion. He didn’t try to give me advice or fix me. I looked forward to his visits.
With some of my visitors, I felt I had to protect them from the horrors of my condition. I needed to make conversation, help make them feel comfortable in my presence.
Only once did Stefan give me advice. He asked if my son knew that I was thinking of suicide. When I told him that I had never mentioned it to him, he asked why not. I said that I didn’t want to burden him with those thoughts. Stefan answered, “Imagine what it would be like for him if he received a call that you had committed suicide, and you had never talked to him about it.” He said with great conviction that I owed it to Barrett to tell him that I was contemplating ending my life. I took his words to heart.
Getting up all my courage, I called Barrett on the phone. He was 19 at the time, a junior at George Washington University.
“Barrett, would you ever forgive me if I committed suicide?” I held my breath as I awaited his answer.