“When we are no longer able to change a situation, we are challenged to change ourselves.” —from Man’s Search for Meaning by Viktor Frankl.
About a week after the brain surgery—as predicted—clumps of hair came out and clogged the drain in the shower. I stared at the strands of brown hair lying at the bottom of the stark white porcelain tub. The back of my head—an area the size of a small grapefruit—felt nearly bald. I quickly steered my thoughts away from the frightful sight by assuring myself that the hair would grow back. But then my mind wandered right back into the deep ditch of despair when I remembered that I had received the equivalent of ten lifetimes worth of radiation in the hospital and the effect that exposure might eventually have on my brain.
I regarded my brain like a two-year old child that literally believed everything that I said to myself and could be easily scared half to death. The brain rewires itself—for better or for worse—according to my thoughts, beliefs, and experiences. Given that I have had a steady stream of frightening thoughts and experiences, I knew that I had my work cut out for me.
As I got out of the shower and dried off, I glanced at my face in the mirror and then looked away in discomfort. After a few seconds I remembered that my brain would register my reaction and then reinforce the neuronal pathways that convey the anxiety and PTSD signals.
I had made a commitment to myself to engage in behavior that would make new neuronal pathways and let the PTSD pathways extinguish over time.
Gathering my courage, I took a deep breath and looked again into the mirror. I fixed my gaze right on the deviated eyes looking back at me. Something about the unflinching eye contact made my heart burst open.
As the tears rolled down my cheeks, I spoke with tenderness to the image looking at me in the mirror. “I’m so sorry to see you suffer. I will always be there for you. I will love you no matter what. We’ll get through this. I know we will—some how.
From that day forward, I looked briefly into my eyes every morning and offered words of encouragement and hope.
Every day posed a challenge to find ways for my mind to convincingly reassure my brain that everything would indeed be all right. My body had become an unpredictable stranger to me with a whole constellation of puzzling new symptoms.
While washing my face, I felt numbness around my right eye, part of the nose, and up onto the right side of my forehead and scalp. As I slipped into fear mode, I caught myself midstream before falling all the way into the ditch of despair. I knew that one way to deal with fear is to get some data.
Data can be an antidote to anxiety, helping to keep the imagination in check.
I went upstairs to my new computer with a very large screen. I sat down, covered one eye and squinted with the other one until the letters came into focus in their oversized font. Frustrated at not being able to see well, with my head about two inches away from the screen, I finally found a picture of the brain and saw the delicate nerves that run through the cavernous sinus.
In addition to the oculomotor nerves that control movement of the eyes, the ophthalmic nerve runs through the blood-filled cavernous sinus as well. The ophthalmic nerve is one of the three branches of the trigeminal nerve—the fifth cranial nerve—the one that transmits sensory information from the face to the brain.
The ophthalmic nerve supplies branches to the cornea, conjunctiva, eye socket, and also to the skin of the upper nose, forehead and anterior part of the scalp. Since those nerves had become partially paralyzed from the abnormally high pressure within the veins inside of the cavernous sinus, it made sense that they could not transmit the sensory input when I touched the upper right side of my face and head. The knowledge I gained from my review of brain anatomy served as a tranquilizer—even though it did nothing to improve the symptoms.
When I sat next to my computer, the muscles in my upper arms visibly twitched. This incessant twitching stopped when I walked away from the computer.
When I held my cell phone, I felt currents of electricity running into my hand and up my arm.
Touching metal doorknobs gave me a tiny jolt as the accumulated static electricity jumped from my body into the metal. And after I brushed my hair in the morning, it stood out straight—as though I had put my hand into an electric socket. I used hair conditioner to keep the hair in place
With the metal in my head, I clearly conducted electricity and became an antenna. I received odd bits of information in the form of random thoughts about facts or things that were going to happen—thoughts that mostly had no meaning to me. The only information that I could count on was when—out of nowhere—I thought about someone for no apparent reason. That unbidden thought usually meant that in the next day or so, that person would contact me.
I told my brain that we were going to look at these symptoms like good scientists and simply observe them in a detached way—without getting frightened or jumping to conclusions.
Over the years of practicing medicine, I had observed that many of my patients had not only their chronic health problems that plagued them, they also had their reactions to those health problems. Sometimes the reactions to their problems could be significantly more severe than the original problems. If the fear and anxiety could be diminished, then the original problems would become more tolerable.
This observation certainly applied to me in my current condition. If I could train my brain to accept the damage and not be afraid of the many strange symptoms in my body that came and went, then I had a chance of leading a full and happy life some day, in spite of all the many problems that I had.
Along with myriad minor problems, I had four major problems—the partially-repaired brain damage, visual impairments, severe insomnia, and inability to digest food associated with chronic diarrhea. An even bigger problem than those listed above related to my brain’s reaction to the brain damage. If I could lessen the reaction—the ever-present anxiety and PTSD—then the original problems could become more manageable.
Fortunately, over time, the problem with heightened electro-magnetic sensitivity diminished. Dr. McDougall had said that my brain would make blood clots around the metal and over time the blood clots would be replaced by fibrous tissue that would surround the metal and encase it in scar tissue. The encasement of the metal might have been what caused the eventual decrease in the electrical conductivity in my body.
Within a few days of coming home from the hospital, I faced yet another unexpected fright—a recurrence of the noises that the arterial blood vessels had made when the high-pressure arterial blood broke through the vessel wall and formed the first fistulas. This time the noises did not sound like loud gunshots. Instead, they resembled short bursts of exhaled air when one is panting after exercising. The first few times I heard the noises, I sank into fear and despair, assuming the surgery had failed. Then I made some observations.
The noises only occurred when I was in bed. While horizontal, my head felt more swollen and painful from the pressure. Being upright, the force of gravity caused less blood to be delivered to my head. Less blood meant fewer symptoms.
I tried to spend my sleepless nights sitting up, but each time I ended up pushing the large cushions away and lying flat.
I stopped doing inversion poses in my yoga practice. I could only hold the “downward dog” pose for a few seconds before my held felt like it would explode from pressure. Bending over to tie my shoes produced similar sensations. Even the jarring of each footfall onto the pavement had the potential of disrupting the new blood clots forming around the platinum coils.
Although the new noises in my brain—presumably related to small fistula formations—continued to occur over the next two years, I eventually stopped feeling terrified because I noticed that the worsening of symptoms after these new noises only lasted for a day or two each time.
The abnormal openings and closings of the internal carotid artery occurred so frequently that I came to accept this reality. I made the assumption that the new fistulas were so tiny that little clots of blood could easily block them and close off the connections between the arterial blood and the venous blood.
The number of sounds that occurred when new fistulas popped open increased with stress. Even with a slight raise in blood pressure from stress-provoking thoughts, the pressure increased inside my head. When the pressure got very high, not only did I hear more popping sounds, but also a bloody nose inevitably followed.
My body gave me a clear mandate to keep my stress levels down or else I could get into big trouble. Of course, some of the stressful situations could not be avoided, like listening to the unpredictable popping sounds inside my head.
I took supplements specifically designed to strengthen the walls of the vessels and avoided supplements that would thin out my blood.
Supplements became a regular part of my regimen. I took high doses of antioxidants to offset the high doses of radiation that my head received during surgery. I had to put the supplements in a blender and drink them until the swelling in my gastrointestinal tract finally subsided over time.
Although the trauma happened to my brain, the intestines responded as though they had been traumatized as well, demonstrating the close connection between the brain and the gut.
Fortunately, I did not need to make any major dietary changes because I had been following an impeccable diet since becoming chemically injured in 1991. For about two years after the brain operation, I ate mostly soups, vegetable juices, smoothies and other foods that digested easily. When I ate meals prepared by friends and neighbors, I took small bites and chewed the food until it turned into liquid—making eating solid foods laborious. I used the opportunity to practice mindfulness meditation and focus on gratitude.
While making peace with the new sounds in my head, another puzzling symptom appeared. On days when clouds filled the sky, I felt overwhelming malaise and anxiety for no known reason. In the past, I usually welcomed some cloud cover now and then as a change from the perpetually sunny skies of New Mexico.
After several weeks, the symptoms I had on cloudy or stormy days progressed from malaise to severe pressure behind my eyes, nose and forehead, followed by incessant vomiting that lasted from 12 to 24 hours.
On a few occasions I became so severely dehydrated from the vomiting that I went without making a drop of urine all day. Concerned that my kidneys would shut down, I called a friend—an emergency room doctor with a clinic on wheels. She came over a few times to give me several liters of intravenous hydration when the dehydration got extreme.
I needed to understand why these episodes occurred in order to quell my disabling anxiety. Since my symptoms posed a medical mystery to my colleagues, I had to become my own detective and use my powers of observation to see if a pattern emerged.
The symptoms consistently occurred several hours before a storm.
In grade school science class, I learned that before storms move into an area, the barometric pressure drops. Air expands when the barometric pressure drops—similar to what happens to our eardrums when we ascend in airplanes. So I figured that the drop in barometric pressure makes the remaining fistulas expand—the ones that the neurosurgeon could not close, along with the new ones that had formed since coming home from the hospital.
The brain is tightly packed inside the cranium with no space to accommodate any kind of expansion from swelling or dilation of the vessels. When the fistulas expand, they cause intense pressure and pain in my head. The pain causes a reflexive vomiting. Once I understood why I had these episodes, I could observe the symptoms without fear and learn to better accept my new reality.
With each episode of pain and vomiting, I reassured my brain, “This too shall pass.”
The constellation of symptoms that I needed to accept included the severe insomnia. The old Erica needed eight hours of sleep to function. With anything less than the eight hours, I felt tired and out of sorts. I couldn’t have imagined surviving on little or no sleep night after night, year after year.
For a few weeks after surgery I slept an average of one hour each night—far better than the year of no sleep. When I started sleeping two hours a night, I felt a glimmer of hope. Two hours represented a one hundred percent improvement in the length of sleep. I survived the scarcity of sleep by spending the balance of the eight hours meditating while lying supine in bed, following my breath—the inhalations and long slow exhalations.
The old Erica would have been panic-stricken at spending hour after hour awake, night after night. In my current state, I had to surrender and accept the insomnia as part of the new me. I had to accept all the many things that were wrong with me. Otherwise, struggling and resisting my condition meant added suffering.
My mantra became, “God, grant me the serenity to accept the things I cannot change.” Yet, I wasn’t totally sure about what I could change and what I had to accept.
I kept reminding myself that “this is the new me.” When I long to be something that I’m not, the suffering increases.
Twice a day I sat in a chair with my back straight, feet on the ground, and did mindfulness meditation for a half hour. I watched my mind as though watching a movie. Every time my mind strayed—every other second—I acknowledged the anxiety-laden thoughts about things that might happen in the future, and then I reeled my wayward mind back to the present moment, following my breath in and out.
I remembered how Thich Nhat Hanh, the Buddhist monk, taught us students at Plum Village in France to silently say to ourselves a certain word on the inhalation and another word on exhalation, “In-Out, Deep-Slow, Calm-Ease, Smile-Release.”
I had initially resisted the smile part. It felt phony to smile when I didn’t feel particularly happy. But, like a good sport, I tried it out. To my surprise, the act of smiling tricked my brain into thinking that I was happy.
Putting mindfulness into practice throughout my daily life provided a temporary reprieve from suffering. I loved to do simple chores mindfully. Keeping the focus on the activity provided a refuge from anxiety.
I especially liked doing the dishes mindfully. As I stood at the sink with my eyes closed, I felt the soles of my bare feet touch the floor, the air flowing into my nostrils with each inhalation, the sun shining through the window above the sink and warming my face, the sudsy water sliding between my fingers, and the smooth surface of the porcelain plate. With mindfulness, the ordinary task of washing the dishes transformed into a sensuous distraction from my misery.
Besides mindfulness meditation, having a daily routine helped to keep me anchored. I began the day by tuning into my body and assessing the current status of my symptoms. Then I put all my effort into turning my focus away from those symptoms. I did some stretching along with a few yoga poses, eye exercises, and balancing exercises to help me stay upright when I stumbled while hiking. After a shower, I spent a few uncomfortable minutes at the computer to check emails, then went downstairs to make my morning drink. The long walks after breakfast in the riverbed behind my house filled me with a desperately-needed sense of peace.
Often visitors came by to offer their support. I had so little life force from lack of sleep that the conversations wore me out.
Midday I prepared soup and ate it on the back porch as I looked out at the ponderosa pines and the mountains off in the distance. In the afternoon I listened to the books on audio that had been generously donated to me. Sometimes practitioners came over to give me the gift of their healing work.
Every Sunday Felicia Trujillo, a local Feldenkreis practitioner, came to my home to give me a special type of body work. She donated her time and expertise to me out of kindness and compassion and because she felt that her skills could help repair the damaged nerves that controlled my eye movements. I looked forward to those Sunday sessions. Felicia’s calm voice had a hypnotic effect on me, along with the way she gently and skillfully moved my body. I could feel the pressure going down in my head during each session. With the lowering of the intracranial pressure, I noticed that my eyes became less deviated and the double images moved closer together.
After several weeks of focusing on my symptoms and my recovery, it became time to focus on something to sustain my spirit.
I remembered a book that I had read in college called Man’s Search for Meaning, by Viktor Frankl who spent several years in concentration camps during the Holocaust. Frankl watched everyone around him suffering and dying, including his own family. He miraculously survived and then wrote about the spiritual lessons that he had learned from the suffering he had endured.
Viktor Frankl’s words left a lasting impression on my teenage mind. I knew that he spoke profound truths about what gives our lives meaning. But knowing through thinking is far different from the knowing that comes through experience. Although I hadn’t survived a concentration camp, I lived with a torture chamber inside my head. The anxiety, PTSD and insomnia played the role of my captors.
Viktor Frankl had said, “In some way, suffering ceases to be suffering at the moment it finds a meaning.”
I knew exactly what gave meaning to my life.
I walked into my office and changed the message on my answering machine to say that I had returned to the office ready to see patients again. I had been back from the hospital for three weeks. I could no longer stand sitting around thinking about how horrible I felt. I needed to focus my attention on being of service to others. Once again, against the earnest advice of friends and family, I resumed my practice. My life depended on it. I had to compost the suffering into something meaningful that could serve others.
Why suffer for nothing?
Once again Erica, your sharing of your journey has provided a healing balm to my spirit.
I find myself breathing more deeply after having just read your blog and feeling an exquisite calmness.
I feel gratitude for the extraordinary capacity we carry for healing and for love, which is where attention to my breathing always takes me.
Love to you dear one.
Lin, I knew you would understand what I talked about because of your own experiences. With love, Erica
I love reading about your many coping strategies, Erica. During the three long years our healthy house was being built, while living outside on our land, I was frequently trying to manage not just my many physical symptoms but an ever present feeling of hopelessness and despair that I would be stuck living outside forever because my chemical sensitivities were so severe. You recommended meditation (Jon Kabat Zinn), books on neuroplasticity (Mindsight was a particular favorite), and other methods of redirecting those trips to the darkside. I would carry my folding chair into the desert and meditate for a half hour every morning and again in the evening. During the winter months, I would bring my homemade organic cotton comforter to wrap up in, during the summer an umbrella for shade. Reading your blog post today, I can see how your coping strategy became my coping strategy. Such good advice! One has to deal with not just the physical symptoms but the feelings, fears, despair or whatever the mind is doing as well. Really loved this blogpost.
Thank you for sharing so much of your journey. I am amazed that you can go so deep into the challenges you have had and bravely share it with all of us. I love your writing and am always moved by what you put into words. I am so excited that Larry Dossey sent blog posts to the founder of North Atlantic Books and that they might be interested in publishing your memoirs. Yahoo! Sending you love and a big hug!
You are my rock. Your story is an amazing and life saving analysis of how life threatening trauma can be turned into life saving dogma. The fact is … you suffered, overcame, and lived to save all of us that are blessed to call you our great healer and friend. Bless God who seems to always provide for us while also leading into our higher consciousness. I am so incredibly lucky to have you in my life. I’ve been thinking and preaching about mind over matter to others lately…it does work. Thank you for sharing and I hope your writings are headed for national publication. Much love…as you always say as I leave the office.
Dear Tricia, my prayers have been answered. It was my fervent wish that the suffering I experience could be used to deepen my ability to help others who suffered. You have been through so much yourself. I always keep you in my heart. “Much Love,” Erica
All who know, know that Erica is a humble saint……..walking the fire of her life and then give to us that….. she will keep us in her heart which is big enough for all of “us”………it is eventually sacred that we do also because its’ true. She knows and honors each person she meets……..like us……..lucky we are
sometimes I do not understand all the suffering we seem to need to become more real tho’
Thank you for your comments, Jim. I’m not a saint, but I’m touched by your words. Love from my heart to your heart, Erica
but it happens……and is okay with our path
much still to learn it seems
Your account of mindful meditation and focus can help many who suffer from PTSD and severe anxiety. It takes a lot of strength not to lose one’s sanity in a situation like this. Now you know for sure, that if you didn’t lose your precious mind, you never will.
That’s a reassuring thought, Teresa. I’m going to assume that’s true. Much love, Erica
Erica, this post inspired me so very much. The meditation advice is now framed and I will use this technique. The nutrition course is giving me the meaning! Hugs to you for the example you are to us all.
You have the technique and you have the meaning. You’re all set. I’m proud of you, Susan. Love, E
Thanks so much, Erica. Your amazing story would be such a great case history addition to The Brain’s Way of Healing…
I’m happy to see you that have been approached by a publisher! Congratulations. I feel so lucky and blessed to know you. Love and hugs, MaryAnn
thank you so much for your comments, MaryAnn. Love, E
The earlier posts are put so eloquently that I will simply say how timely and encouraging this post was for me.
I’m delighted to hear your memoir has sparked interest in a publisher…how could it NOT? My folder of print-outs is getting unwieldy. A published version will be incredibly helpful to so many people.
Thank you, Jane. It makes me so happy to know that the post was timely and encouraging for you. My intent for sharing my story that it would hopefully be helpful for those who suffer one way or another. Many blessings, Erica
Love this post Erica! Great soul food embedded in your thoughtful musings.
What a learning lab on all levels your brain has been… as well as such a heart expanding teacher..
Deep bow and much love to you dear one.
Thank you, Laurete. I know that you’ve been through your own trials and have managed through it all to find the path to joy. Love, Erica
I’m so glad you wrote about using meditation, mindfulness, and awareness of the body-mind-spirit connection. I think that will help others who don’t know of the efficacy of these practices. They’ve helped me tremendously over the years to deal with medical issues. We seldom perceive our bodies as entities we can “talk” to–we usually understand them as mechanical that with decent care will not betray us, but in my thinking we can actually communicate with them as if they are a friend.
You’ve talked about writing these chapters of your life into a memoir–I certainly hope you do because it’s not only entertaining, but important in so many ways. Thanks again for your wisdom and courage. Benette Sherman
Thank you for your comments, Benette. I sensed that you would understand what I was talking about. Regarding the memoir, to my great surprise I got an email from the founder of North Atlantic Books. Unbeknownst to me, Larry Dossey had sent him a few blog posts to look at. The publisher said he might be interested in publishing my memoir and wants to see it when I have it completed—probably a year from now. Thanks for all your encouragement, Benette. Love, Erica
wonderful news about possible publication—many others will profit from your experiences.