Who is that Woman? Discovering the Nature of My Other-Self

My name is Sarahí Lay Trigo, I am a choreographer, researcher and dancer and this is my personal experience of healing through dance (Fig. 1).

Fig. 1

Sarahí Lay Trigo. Photo by Tania Peralta, archives of Sarahí Lay Trigo. 2021 Description: Photo of a woman with short dark hair wearing a black suit sitting cross legged in front of a white wall with her hand on the side of her face.

It is cold outside in my hometown, Guadalajara, Jalisco. It is Saturday, December 6th of 2008. I remember the exact date because my entire existence changed on that day. Upon awakening, I immediately felt my face was strange and stiff, as if metal strips inside imprisoned me. This made me run to a mirror to see what was going on. What is wrong with my face? I repeated that question as a mantra in my mind. I remember myself flowing in slow motion. That journey—from my bed to the mirror, only a few meters, yet the moment felt eternal as if the seconds had become hours.

When I finally saw my face, I tirelessly repeated. This is not me; this is not me, who is this horrid woman who got into me? Looking at my reflection produced me a deep “sense of bodily disownership” which happens when “one is no longer aware of one’s body as being one’s own.” (De Vignemont, 2018, p. 18).Footnote 1 Crippled, stunned, horrified, petrified, I felt that my face became a horrible expression of a disfigured flesh. (See Fig. 2).

Fig. 2

The day everything began. Photo archives of Sarahí Lay Trigo. 2008. Description: Photo of a woman's face and one side of her face appears to be drooping and paralyzed.

Although I do not usually remember my dreams, two dreams came to my mind, both of which I remember as if there were real. The first was a nightmare I experienced at the age of twelve, and the second just a few weeks before my illness. In the first one, I was paralyzed, in a wheelchair, unable to walk, apparently returning from war. When I remember it, I actually feel the terror of that situation. The second dream was symbolic. I was in a large semicircular auditorium made of wood. I was looking down and towards the audience, and I could see a paralyzed old woman that nobody helped. I came down to help her. When I took her hand and she looked at me I realized that old lady was actually me, a sick and old version of me. Then I carried her in my arms to help her and that old lady became a baby. That baby was me. “Were those dreams premonitions of a strong illness in my life that would leave me paralyzed?” I thought to myself. This must be a dream. I just need to find a way to wake up. So I screamed, “Mom. Please come and tell me, is my face paralyzed?” She came to me and said, “Yes, your face is paralyzed”. With that affirmation, I knew something terrible was happening, but what?

Reminiscences of the night before came to me. I had cried in front of the library that I had studied in for years. Though familiar with the environment, for some reason, I felt abandoned, and I began looking desperately for my mom, who had driven me there. I cried uncontrollably as if someone whom I loved very much had died, as if the entire world were ending at that moment. It was freezing, I was weeping in confusion, my face was warm, and my facial muscles felt a lot of tension. Perhaps, I thought, that is what has caused me to feel what I am feeling now. Of course, I have muscle tension caused by stress, I explained to myself. But a terrible pain in my head afflicted me in addition to the facial disfiguration. I could not think of any plausible explanation for that. The ache was constant and uncontrollable. Even brushing my hair was painful. It was like a constant drill in my head that made me want to die. Later I learned that this is called the suicide disease,Footnote 2 because the pain is so hard excruciating that at some point you just want to die or actually commit suicide.Footnote 3“I need to see a doctor immediately” I thought.

Actually, I saw several doctors. Every one concurred with my explanation: Face paralysis caused by exposure to a cold air in combination with a stressful emotional state. It is possible, I thought to myself. Studying for my master’s degree and training as a ballet and flamenco dancer, I had been very stressed the last several weeks, working at the library, reading and writing until sunrise to complete my thesis. I hardly slept. I decided to stop dancing for a while and ask for an extension for my master’s degree. “Everything will be fine”, I thought. Maybe life was just putting me in a situation where I learn to relax.

But as time passed, the symptoms increased. The headache was terrible. My face began to deform more; my right eye could no longer perform voluntary movements. I had to patch it so it could close and moisten. I also started to feel dizzy, to constantly vomit and to feel an endless roaring sound in my ear, an incessant tinnitus that was driving me crazy. I started to feel captive by another woman that was living in me. My other-self. I did not know at that time, but what I was feeling, in addition to the paralysis of the facial nerve and trigeminal pain, was the result of an infection of my face and it’s peripheral nerves. Later I understood that the intensity of the damage was due to herpes zoster infection that had started in the right inner ear and spread to my brain.

I decided to go to the hospital. I arrived crying, vomiting and afraid. I was too weak to stand properly. When I arrived, they put me in a wheelchair to take me to the emergency room (ER). In the ER, the doctors decided that I would be admitted as an inpatient, because of dizziness, vomiting and the horrible headache. I hoped that a new diagnosis could explain my condition.

An endoscopy was scheduled for next day. However, the test results did not change the initial diagnosis (physical exhaustion and stress). I spent a week under observation and I was sent home with a new recommendation: to see a neurologist. I remembered that a few months earlier I had danced for a doctors’ gathering, and there, I met a neurologist. I called him immediately and he received my parents and me in his office. I reached the waiting room dragging my feet. I must have looked pretty bad because he could hardly recognize me. When he saw me, about six feet away, even before examining me he said:

“Is it really you? Oh Sarahí I’m so sorry, but from what I can see I must say, you have a virus in your brain. I’m going to do the routine check, just for protocol, but you must immediately go to a hospital”.

“I just came out of one!” I exclaimed.

“Well I do not care, you have to go back, if you do not receive medical attention immediately you can die,” he replied.

I was in shock. It seemed so unfair. I did not want to end my life being just a lump in a hospital bed. I still wanted to do things in life. I wanted to dance. My parents and I drove to another hospital. I remember looking out the back window of the car, feeling how my life could end in a moment. I was deeply sad, my body collapsed as if all vital energy had been removed from me. I wanted to scream but I did not have the strength. I just cried desolately. As if my life was coming to an end, I thought of all the things I was going to miss, especially dance. It was as if my whole world went dark and cracked.

I was again in a hospital, this time in a public one. The things were so different from the private clinic. I had to wait a long time to see a doctor. I was shaking and crying. When I finally saw the doctor, his diagnosis did not differ much from the first ones (facial paralysis by stress). However, he decided to admit me into ER because the vomiting and headache were so strong. I was weak, tired, in so much pain. In the hospital, days were very sad and devastating. I spent three days waiting for someone to see me. Finally, an otolaryngologist noticed that I had a virus in my brain and immediately admitted me into wing of internal medicine. In my new environment, reduced to a body in a hospital bed, I waited for a neurologist’s evaluation. (See Fig. 3). Her evaluation was shocking. The paralysis had run from my face through the right side of my body. “What is your opinion?” Asked my mother. The doctor said, “If she survives, she will not be able to walk again.”

Fig. 3

Reduced to a body in a hospital bed. Photo archives of Sarahí Lay Trigo. 2008. Description: Photo of a woman resting in a hospital bed with one eye closed and a medical patch over the other eye. Right side of the face is paralyzed.

I heard what the neurologist said between dreams, wishing again this were a nightmare from which I could wake up. The first stage of my disease lasted more than a month. I left the hospital on January 19th, 2009 with a discharge sheet that finally said what had happened to me. Viral encephalitis caused by herpes zoster that had ended up causing a hemiparesis and a complete disfigurement of the face, severe damage of the facial nerves: cranial nerve 7, cranial nerve 5 and nerves of the cervical plexus. I entered the hospital walking, but I returned home unable to walk, stand, or even talk because of the facial paralysis. I couldn’t do anything by myself. I depended on other people for everything: eating, drinking, moving, bathing, and changing my clothes; absolutely everything. What kind of life is this? Having identified myself as a dancer my whole life. Now that I cannot move, who am I?

A Motionless Body: Coming Out of the Hospital

At last, after that entire nightmare at the hospital, I went home in an ambulance. Due to the virus, my immune system was severely depressed. While I was in the hospital, I was confined to a minuscule restricted area with rigorous measures of care. Leaving the hospital petrified me. I became used to the idea of being hospitalized, as if all my life had happened in those four bleached walls. I was really attached to the reality that had kept me alive during that time. Honestly, I did not want to get out. I could not even move. All the way home, I thought, “Why are they letting me out?”.

On trip home the sound of the sirens was unbearable. I had no tolerance for sound because of the damage to my inner ear. I could not feel like myself in any way. Although I knew I was returning home, I felt as if my head was detached, an out of body experience looking down on my disabled body. My mother was with me in the ambulance, her attitude positive, but the expression in her eyes was filled with deep sadness. She looked worried, demoralized, sad, terrified. I thought, “What will she do with me now that I am incapable of moving?”.

I never imagined how heavy a motionless body could become. The two paramedics who drove the ambulance were unable to take me upstairs in my parents’ house. The stretcher didn’t fit, so they had to carry on a sheet. My father and my brother wanted to help but it was impossible. I felt like a nuisance. They went out to the street to get more help. Only with six men holding the sheet was it possible to take me up to my bedroom. I finally arrived to that space in which I had lived more than fourteen years. The room seemed really big. The bed was huge. My body was so thin. At that moment, I was reduced to skin and bone, from 128 to 82 pounds, with no evidence of muscle mass remaining. It was as if all my life dedicated to dance had vanished. There was no trace to indicate that I had done any exercise in my life. My body was a large hanger with dangling leather. I told my parents “I want to get back to my hospital bed, to my illness crib with bars so I do not feel that I will fall.”

A deep feeling of vulnerability came to me. Everything was different. My whole world collapsed. The first days were the most difficult because the change was radical. An unbearable headache persisted due to trigeminal nerve damage, and since my head was the part of the body in which most damage had occurred it was so delicate that I needed a special pillow. To move was unthinkable without help. I needed someone to change my posture. The fact that a normal bed cannot move is terrible when you have to stay in it all day. My body started to get sore. My patience began to wane. I had been sentenced not to walk due to the viral damage to my brain. I had been told that the medicines they gave me were only for pain and to reduce the inflammation of nerves and affected parts. There were no medications to help restore the damage done to the brain or nerves. My only chance of recovering, according to the doctors, was through physical therapy, but the challenge of leaving my room, leaving the house, and getting to therapy was insurmountable. I felt so weak that any effort felt colossal, my head still hurt and any movement caused me dizziness. In a constant state of vertigo and pain, constrained in a vicious circle, I couldn’t escape. On top of this I realized that not only was my (dancer) body gone, but also because of my ear damage I could not fathom the idea of listening to music, much less moving to it. It was as if I died to life. I spent most of my days weeping in silence. I did not want my parents to know how much I was suffering.

In that moment of desperation, I had a stroke of illumination. I remembered the words of a male nurse, who looked after me with such tenderness during my stay in the hospital, “Your recovery depends on you, there is no medication that can help you more than your will. You are going to have to be very strong to face what comes next. You have to trust yourself and make your best effort, and never let depression beat you. It does not matter what the doctors say, you can show them that they are wrong.”

I realized that I had to do something to recover. I had to figure out how to move in my own bed to be able to go to physical therapy. I had to change my reality, but how? Doctors did not believe that I would walk again, so I did not have much hope. Fortunately, my mom patiently read the Spanish version of the book Close to the Bone: Life-Threatening Illness as a Soul Journey of Jean Shinoda Bolen (2006) out loud to me, since I could not fix my sight on anything for a long time due to the damage in my right eye. (See Fig. 4). I learned that visualization was something very powerful for recovery. Encouraged by my mother, I began to imagine that inside of me lived an army of little people that worked day and night to restore the damaged parts of my body. My mother urged me to begin to move and live again, with visualization and imagination, without which I would probably never have recuperated certain motor skills. How powerful the mind is! Almost magically, as the days and weeks went by, the connection between mind to body commenced!

Fig. 4

Reading session with my mother Patricia Trigo Brostrand. Photo archives of Sarahí Lay Trigo. 2009. Description: Photo of an older woman wearing a pink sweater holding a younger woman who is holding a cat and looking at the camera with asymmetry on her facial expression.

During the few minutes I felt better, I started doing arm exercises. As I was still very weak, I could not do much. At the beginning, I did some biceps push-ups on the bed with my own weight. Then I made up a version of the bench dip by placing my feet on a chair near my bed and my hands on the edge of the mattress. I began to exercise shoulders, chest, triceps, biceps, wrists, palms, so I could carry my own weight and be able to change positions in bed without help. Most of those exercises I had learned throughout my life as a dancer. I would never have imagined that they would help in such a moment. Maybe if I had not trained as a dancer, I would never have imagined the therapeutic possibilities of dance movement.

Due to tinnitus, I was still unable to tolerate sound or music. At that point, living without music and dance was like living in a state of death. How I wanted to dance! How I desired to listen music and imagine I was dancing! Just a few minutes of dancing would have been enough. But I could not do it. “I have to keep training. I have to get stronger,” I told myself several times a day.

In addition, facial paralysis was another problem. Because of the damage of my facial nerves, talking was a big effort for me. (See Fig. 5). Having a conversation with me was like talking to the last speaker of a dying language. My dialogue was very basic: please move me, feed me, clean me, give me my medicine, etcetera. Everything was reduced to very basic actions. As time went on, when I couldn’t pronounce certain consonants or articulate correctly the sound of the words, I invented some words.

Fig. 5

My face and the right side of my paralyzed body. Photo archives of Sarahí Lay Trigo. 2009. Description: Photo of a woman in a wheelchair sitting at a table with a birthday cake full of lit candles. She has a blanket on her lap, and one side of her face is smiling, but the other is drooping and expressionless. The right side of her body is deformed due to sequelae of hemiparesis.

Days passed like long years in my bed. Most of the time, I lay without moving and without speaking in my little quadrilateral space (my bed). However, I used to talk in silence to myself. I cried in silence. Seeing how my life flowed between four walls, dizziness, pain, and illusions. Despite the state I was in, deep down in my soul, I kept hoping to move again, to walk, to listen music, to talk properly, to dance, mainly to dance. Dancing was the essence and the deepest meaning of my life. I could not bear to be without her. Then I started thinking, what if all this is really a dream, a lie, or a big joke of destiny? One of those dreams that seems not to end, but I will wake up and everything will be the same again. One of those lies that over time will eventually fades away. I just could not believe the state I was in, so I kept telling myself that all this was a lie, a dream or a joke that would end soon, very soon. Every night I told myself, “Tomorrow everything will be different”. But the next day I’d wake up to see that everything was the same. And, although I did not see great progress in my recovery, I kept doing my visualizations and exercises every day without exception. I started to move more. The training strengthened me, so my arms could carry my weight. Still, I could not get out of my little quadrilateral space, my small field of action.

Dancing in Bed: Fighting Against the Predicted

“Why don’t you dance in your bed? You are a dancer, you have always been a dancer, you can dance anywhere, at the end of the day dance is movement, motion. Dance with the part of the body you can move. Just dance! Dance, dance, dance!” These were the words my father said that would change my life forever. Knowing that I was incapable of being out of my bed, how could he tell me that? I felt deeply hurt by his words. I reacted, “What are you talking about? How can you think I am going to be a dancer in bed? That is totally ridiculous! I cannot even listen to music, how can I dance without music? How can I be a dancer without an audience? Do not tell me to dance in this state. That is depressing. It is terrible. It is too sad for me. You are going to end up killing me”. However, my father –who is also a dancer– instead of feeling sorry for me, with a deeply bitter face he looked straight into my eyes, and told me, “If you need an audience, I will be your audience. If you need music, ask your heart to be your music, tell your heart to be the musical rhythm that guides your steps from now on. Just dance my little girl. I will applaud you. Your mother will too, here we are both to support you. We are your center. We are two beings who deeply love you and who will always be here for you. So dance!” (See Fig. 6).

Fig. 6

Me and my parents, Patricia Trigo Brostrand and Adrian Lay Ruiz, at my birthday party. Photo archives of Sarahí Lay Trigo. 2009. Description: Photo of a woman sitting in a wheelchair holding balloons with an asymmetrical smile of her face. Her mother and her father are on either side of her smiling.

And so I danced! I could not stand up, so I started dancing in my bed. I imagined myself doing  contemporary dance on the floor. By moving the only parts I could move, mostly the left side of my body, I felt the rhythm of my heart. As I moved, the rhythm beat faster so I tried to keep following the beat. Later, when I saw Mikhail Baryshnikov dancing with his heart beat in a video of YouTube,Footnote 4 it was like a ghost. I had experienced that feeling in my own flesh. I kept dancing in my bed, and as he promised, my father and my mom kept applauding me. I tried to dance every day. Some days the headache or dizziness prevented me from dancing. The days I managed to dance I experienced the kind of magic energy that flows when, through dance, it is possible to share with others. That sensation began to motivate me. Dance became my salvation. I remembered: dance had always been throughout my life a way of redemption. During my childhood, dance became a space to discover how human movement can do magic, alchemy. Dance was permanently present in my life, not only as an expressive aesthetic movement, but as a refuge, as a form of catharsis, as a way to knowledge, as a deep understanding of myself, and also as a form of escape, a way to live life as an enamored world full of movement. Hence, dance was an enchanted method to transform sadness into joy and peace. Dance became my healing instrument.

Dancing in bed was a completely new form of knowledge and a form of miraculous healing. Now, that I write this, I cannot remember exactly how it happened. But movement itself began to return to me, the person I used to be. It was as if, little by little, the woman who possessed me, my other-self began to leave me. I was starting to be myself again. My world came back to me through movement. Body memory really exists!Footnote 5 That was my way to explain how my body began to respond to motion, to dance. I could move! I danced! Not only the side that had not been affected but, my whole body. Then I realized that I needed to start making my movements more consciously. Not only dance for dancing. I could start rehabilitating myself. Years ago, I had once bought a book of kinesiology for dancersFootnote 6 that I just had glanced at in brief. It occurred to me that perhaps I could find movements that help me recover faster. I needed to study my movement. I started to incorporate new repertoire of movements, knowing how they worked and what they were for. I merged some tools to strengthen the muscles: elastic bands, balls, and weights.

Once I was able to read, I flirted with every author I thought was capable of opening routes of wellness. I added new readings such as Chopra (2010), Dethlefsen and Dahlke (1997), Hay (1991), Jodorowsky (2004), Ruiz (1997), Sacks (2002, 2008) and Wilber (2001). I devoured every word. I analyzed illness with the lenses of psychology, neurology, psychomagic, and philosophy. I had nothing to lose. I meditated, tried yoga breathing exercises, psychomagic art, positive phrases, eating well and most of all not to curse because of my illness. Living an almost illusory positivity, the scene seemed to change and I began to smile again. There was hope. The woman I had been began to return. My parents got me a walker. It was time to dare to leave the wheelchair to which I had been confined when I was out of my bed. Finally, I started to accept sound again, and music returned to my life too!

Returning to Myself: Walking and Dancing Again

I received the walker and a new CD at the same time. I asked my parents to bring me a CD player. The first song I listened to was Tarres written and performed by Joan Manuel Serrat.Footnote 7 The music starts slow with a beautiful 4/4 time, rumba clave 2–3, with all the feeling of a hispanicized Cuban son beat played at the beginning only by an acoustic guitar, castanets, and a rain stick. I commenced dancing in my mind imagining all kinds of movements. The beautiful sounds awakened my being. Music aroused all my pores, nerves and muscles that lay sluggish. A power of motion energy ran through my veins. Lyrics moved me to tears. It was as if Tarres, “Who walks backwards, write backwards and never has enough. Who wears the right sock on the left foot to be seen different from me […] who is nobody without me and I am nobody without him” was that other woman, my other-self. I felt so identified with the poetry of the music that became a hymn during my recovery. After listening three or four times that day, each time compelling me more to movement, a true desire to walk again emerged in my heart. How powerful music is!Footnote 8 That is one of the things I love most about being a dancer, the pleasure of inventing movement to notes, sounds and silences. To create a story that can be expressed through motion and musical echoes.

Thanks to dance and music, I dared to walk again. My parents moved the walker to the edge of my bed. Between the two, they helped me sit on it, slowly lower my legs to the floor, put my slippers and aided me to stand. For the first time after this nightmare, I was standing again. What a strange feeling. It was as if I had never been standing in my entire life. I grabbed the walker as hard as I could and I asked to them to play the song again. I began to barely swing my hips, preparing myself to start walking again. I had forgotten! After more than three months living in a bed, I could not remember how to walk. Everything was different, I was stronger, but I still had no muscle and I still weighed 90 pounds. It was me, but it was not me. I then focused on the music and I suddenly felt as if the rhythm was taking me, as if the notes charged me. I took three steps. I was a baby learning how to walk. Three steps, and I was too weak to continue. Those three steps, however, were a triumph. It was like breaking the curse. “I am walking again. I will dance again. I swear!” I said.

Now that I had achieved those little steps with the walker, all of which began with the idea of dancing, I started thinking about going to physical therapy. My mother took me to a specialized place for physical therapy. I arrived with my face disfigured, my walker, and a desire to try. The evaluation was not good. I should be happy to still be alive. They did not know if I would be able to walk again without support. I was too weak and the damage seemed irreversible. As expected, they gave me no hope of dancing again. Inside I thought with pride and defiance: whatever you say. I already danced in my bed! Their words did not discourage me. They assigned me to four hours of physical therapy per day, five days a week, including language therapy. At first, I was assigned to one month of therapy but I ended up doing a whole year.

One day of therapy consisted of four hours of work. One hour of language therapy in which I used to do several linguistic exercises as tongue twisters, articulation exercises that facilitates the correct pronunciation of syllables and consonants, and repetition exercises to strengthen speech and language mechanisms. I also worked on different movements to correct the gesticulation of my face. Thereafter, half an hour of electrostimulation (only in my right arm and leg, but not the face which was prohibited due the damage to the facial nerves), and half an hour of hot water, which I spent in a hydromassage-tub trying to move the affected part doing resistance against the water. I strengthened the muscles of arms, legs and abdomen (mainly), by doing one hour of floor exercises (with elastic bands, weights, and balls). I also did one hour of facial exercises (including massages) and thermotherapy with cold and hot (water bags were placed at different times and places of my body –including my face– to help my muscles to contract and decontract). With all of these treatments and exercises, the goal was to relearn how to walk. Ironically, we often assume that walking is automatic; without losing the ability to walk, we forget all the developmental training behind walking.

I worked with three to six different therapists per day. At home, I continued with cryotherapy, which involved wrapping me naked in towels that had been previously wet and frozen to reduced inflammation, pain relief, and muscle healing. The day was exhausting and overwhelming. Most of the time, painful, other times disappointing, the advance was very slow. The thing that kept me going was the hope of being able to dance again.

Sometimes, during the weekends, or in the mornings (that was the only free time I had since in the evenings I was in therapy), I used to dance with my walker and with my father in the little studio that he built for me in our house. At first, after being in a hospital and dancing in bed, returning to a proper space for dancing was a shock. Before getting sick, I trained two to four hours per day, seven days a week of classical ballet. I was in good shape. Therefore, the first time I saw myself reflected in the mirror, I was outraged. The image I had of myself in my memory did not match with that person I saw. I still saw another woman, my other-self. I stood in my studio with my walker, weighing around 90 to 95 pounds, with my face disfigured. Oh! How awful I felt! However, once again, if I listened to Tarres, grabbed my walker, and like the first time, swung my hips and tried some rumba dance steps, I would begin to dance again.

I differentiate between dance as profession and dance as a way of life, dance as art-technique for dancers and dance as a healing path. For me, dance could not be a profession anymore, but rather it was my life as a human being. Dance was my home. Dance was my true self. Dancing saved me from illness. Dancing restored my life. Every hour in therapy was worth it if later I could see improvement in the studio and do more dance movements. Dance, took on new meaning, a profound meaning in my life. It became spiritual, it illuminated my path. Dance now was ritual. A ritual of healing that day after day was bringing me back to life. How potent can be dance and music, art as a human healing connection.

After one year of doing physical therapy, all of 2009, I had achieved great triumphs. First, I was able to walk supported only by a cane. Doctors were really surprised, especially the neurologist who had treated me during my hospitalization. Second, the deformation of my face was visible only when I laughed or performed facial movements very exaggerated. Something curious started happen to me, since some facial nerves become demyelinated. Every time I ate, I started to cry. Doctors told me that this phenomenon was common. They called it the crocodile syndrome (I still cry when I eat, especially when I eat something very spicy). Third, my right eye finally could close and blink naturally, but sometimes it does not close completely. I still have an almost imperceptible tic in my face that includes my eye and my lips. I was not able to recover my peripheral vision. Fourth, I was able to move both sides of my body almost identically. However, the right side continues to have certain weaknesses and lack of sensitivity: basically affecting my equilibrium, fine motor skills and kinesthesia (especially with respect to distances and forces). Fifth, headaches are no longer a constant but a pain that comes sporadically. The roaring in my right ear is also sporadic.

Baby Ballet: Going Back to Training

I got my master’s degree in the twilight of 2009.Footnote 9 In 2010, I moved to Mexico City to work as a researcher in an anthropology center. I acclimated to my new reality, with my cane, my favorite support, sometimes with my other-self, sometimes just trying to be me, to live the best I could with the consequences of my illness. I arrived there knowing that maybe I would never perform again on a stage. However, when I was away from work, the only thing I wanted was to dance. Oh, how I wanted to dance. Away from my dance studio at home, where I used to dance without hesitation, with my walker or in the floor, without shame of my body or what I was doing. Now what? What could I do now that I did not have a place to express myself through dance, through motion? I had to do something. Being without dancing, without a continuous update of body movement, could reverse my rehabilitation. I could feel how my body needed physical motion, dance training. I desperately searched where to take dance classes again. Knowing that the only discipline I could do at that moment was ballet, since flamenco, modern or folkloric (my principal dance styles) would have been much more difficult for me at that time, I took on the task of finding a place to dance ballet again.

Most of the schools did not want me or did not have a class in which they could incorporate me. I was simply not a normal case. It seemed pointless for someone like me, ‘old’ (I was 28 at that time, pretty old for a ballet dancer), detrained, and crippled to ballet dance. I lost half of that year searching for a teacher willing to work with me. While I was desperately searching, I realized that I had to train myself in whatever way. I was certain that I needed to exercise otherwise I would lose what I gained. Then, while I was looking for a dance teacher, I took the first option in which I was accepted. Fortunately, a martial arts school was located only three blocks away from my work place. So, I started training Kung-Fu with a teacher who seemed not to care about my condition. “If you do not mind working with children and teenagers in a class of beginners, there is no problem for me,” he said. Besides, I had one great advantage. Due to my peripheral blindness and my head as the most sensitive spot, my classmates were forbidden to hit me. Thus, I basically trained with them for flexibility and strength exercises, which helped me to recover my sense of balance. Although sometimes I would lose control and fall to the floor. I was training.

But the more I trained Kung-Fu, the more I missed dance. There was exercise, training, strong, flexibility, but there was no music. I was lacking the important movement bond, musical tempo. I needed that way to transform pain into visual-motion-music. Even if I had learned to follow the rhythm of my heart, I needed that connection. I missed the musical root of dance, the musical essence that fuels a movement in a musical phrase. I want to synchronize movement to music, music to being, being to life.

Finally, I found the only dance teacher willing to work with me at that time, Professor César Pantoja. He was honest. He said I should start all over again as a beginner. I had to relearn all the steps, which was the only way to be sure to do the exercises as they should be done. He wanted to avoid injuries. My condition was not optimal, yet he was optimistic. He told me, “Body memory is extraordinary, you have to trust it, and you will see that you will advance rapidly.” I knew what he was referring to because I had experienced it. I started little by little. The first weeks of training were hard work, really hard. It was not doing floor work at the Kung-Fu studio, dancing in bed, or dancing with a walker. This was my real chance to get back to dance, to return to dancing, so I had to start dancing without my cane. At the dance studio I started not to use it, although I continued to use the cane to support my walking.

That experience of returning to dance made me appreciate the ballet barre. Although I had spent more than twenty-five years training with a barre, I had never understood the true importance of this instrument in dance, as a precious instrument of feedback and stability. Particularly at this moment, the barre had clearly become a serious support mechanism in my daily training. With that solid base on the floor with that I could hold on to in order to dance again, work carefully and consciously all the exercises without worrying about losing balance, especially when I had to grand plié, or to make some seconds of equilibrium in the tips of my feet. I felt safe, I had returned to my home, to my dance-home.

Classical dance began to shape my body again, to renew my spirit. The dancer in me was coming back to life. My muscles returned to form, the agony in me was no longer an illness pain but a work pain gained through physical effort. What a wonderful reward. Sometimes ballet exercises frustrated me, particularly when I tried to do an exercise that I had successfully repeated thousands of times before but at that moment I simply could not do it correctly. To jump and turn, two of the things that I liked most, and before my illness were very easy for me, had become a colossal challenge in my new experience to recapture dance technique. The most basic steps of ballet dance challenged me: to do a correct plié (demi or grand) without unbalancing, a battement tendu or a battement jeté (with the same strength and intention of the two sides of the body). The major problem was a lack of control of my body. Thus, I felt discouraged and sometimes gratified but motivated, not only because I was doing what I loved most in the world, but also because I continued to defy the statement “you will never dance again”. It is true that we cannot understand true meaning of joy without experiencing sadness. In that beautiful renewed space as a dancer, I trained with professor Pantoja around a year. Later, due to professional reasons I returned to Guadalajara, prepared to take classes again. As soon as I was home, I kept training as a dancer, mostly in my personal dance studio.

Returning to my Dance-Self: Experiments with Motion

Finally, in 2011, I returned to stage with a small group of amateur dancers in Romeo and Juliet. (See Fig. 7). Shakespeare was one of the authors that shaped my life. I was thrilled to perform the role of Juliet (very paradoxical: first time in my life I had a principal role in a ballet work, I had always danced as a soloist or principal just in flamenco style). I must confess it was a bittersweet experience. Happy to be back on stage, I wished with all my heart that I had the technical skills I had before getting sick. I wanted to be a principal, but with all the expected characteristics of a prima ballerina. Due to my lack of equilibrium, I could not interpret the role of Juliet in pointe shoes. Also, no matter how much I massaged my face, I still had a bizarre look when I tried to express while dancing. Some skeletons of that other woman were following me. Remnants of my other-self remained that made me want to train more, to go further, to erase all the traces. I wanted to be the person I had been before becoming ill, before living ‘in’ or ‘with’ an other-self. I started to train long hours at my dance studio sometimes alone, but often with my father. My father had lived this illness experience with me, and his years of training as a dancer and as teacher equipped him to help me.

Fig. 7

Performing as Juliet. Photo by Hugo Carrera, archives of Sarahí Lay Trigo. 2011. Description: Photo of a woman in a white dress sitting on her knees over a bed with her hands close to her mouth, with a furrowed brow. Behind her is a set of a window with red curtains, damask wallpaper and a vase.

I wanted to dance flamenco. There was no other dance style I liked more than flamenco, because it was the style I had experienced the most (since I was a little girl). With the new technical base I had, I wanted to try, but some of the consequences of my disease were greater when I danced flamenco. When I was aiming to facially express (again my face deformed), and also when I wanted to perform fast movements or to zapatear (tapping one's feet), I was always late. It was as if the order of movement that commands my brain takes more time to arrive to one side of my body (the right side). No matter how much I tried, I was always behind the tempo. I was also having problems with some movements of my right leg, which felt weak and slow. Perhaps it was too late. Trying to dance when I was almost thirty, I had the urge to quit. Most professional dancers retire in their thirties. I wanted to recover something that is built over a lifetime in just a few months.

I believed that I was ugly, deformed, and not aesthetically pleasing. On one of the afternoons we spent together, my father suggested I develop a style of flamenco that allowed me to continue expressing myself with all my new conditions: my buckle body, my ragged face, my weakened right leg, integrating my strengths and weaknesses, my past and present as a dancer. “You are beautiful, feel your beauty inside and do not try to find it in a reflection, live and arise from your dark side, the side that hurts you more. You have to stop looking at the mirror; do not dance looking at the mirror. Dance for me. I am your audience. And also, you have to stop depending so much on the zapateado and the precipitous and abrupt movements that characterize flamenco, you must develop your own style. Just dare to it.”

Taking away looking at myself in the mirror while I was dancing was necessary. I couldn’t stop seeing the ugly in myself. So I started dancing not with an ideal of beautiful reflection but with pain, fear, hatred, deception, nostalgia, melancholy, sadness, sentiments I had to deeply explore in order to brighten them. The deformation of my face became not an obstacle but an instrument of expression. I found other types of music that allowed me to create different movements: more modern or classical, more expressive, more human, less studied, less beautiful, less aesthetic, more crude, more rough, more simple, more naked. Instead of using the typical classical flamenco, I incorporated music that came from what is called new flamenco or flamenco fusion, even music from other rhythmic domains or styles such as Classical, Tango, Mexican, Electronic, Instrumental, at the end, my brother, Carlos Lay Trigo, who is a musical composer started composing music for me.Footnote 10 There is no greatest blend between dance and music that when music it is created to be dance. That new type of music encouraged less to zapateado and empowered more expressiveness with my arms, my hands, and face. I began to forget I had a weaker part in my being. I experimented with different kind of movements for hours with my father’s help who used to videotape me to study dance motion so that I could see which movements or steps were more appropriate to communicate what I wanted. Together we made a kind of motion laboratory in which every day was a different way of knowing myself through dance. Not everything was delightful and pleasant in this exploratory dance immersion. There was more dark than bright. Dark is always a suitable lesson, awkward but peerless. My dance movements were edged by pain’s knowledge.

My father can be very perfectionist about dancing. Not in a technical way, but in the purpose of meaning, the inquiry meaning in the steps. I keep this as my major treasure in life, something that usually nobody stops to teach. All that time my father used to demand the reasons of my movements, the story or stories I wanted to transmit, the emotions, the feelings, the plot, the connotation of the motion. Sometimes I really did not know what to do. I used to say, “I was just dancing, and that is it. Why you always want everything to have a reason?” He replied, “You have to know the reason of the movement. Dance has to fulfill its function of evoking. You have to say something. Go further the steps, the technique. That is the only way to be sure that movement means something. You have to go beyond the dance itself. Make me feel what is the meaning of dance in your life.”

That lesson made me go deeper, it lead to a wonderful self-exploration of work. It was backbreaking and demanding not only in terms of the training, but also how dance can be an instrument of signification and communication. I used all the tools I ever knew, to understand why I wanted to use one movement or another. Searching for reasons, such as why one type of music could be better than another? Why was it better for me, for that movement, why did I like it, why did I want to express that kind of motion, story, dream, and feeling? This made me understand the true communicative value of dance. I was really getting back to my dance-self. I spent three whole years dedicated to this laboratory of movement with my father. I still work with my father, my best dance teacher ever.

During 2012, I had the opportunity to take some private classes with an amazing dance professor in Valencia, Spain, Alex Sieff. His forte is contemporary dance and his own approach to  technique classes (a wonderful combination of exercises based principally in kinesiology and the study of the movement of muscular chains that make you collocate your body correctly). With him, I could explore carefully the principles of  dance. Working with Sieff was a way to re-know my being, to re-build the balance needed to optimally perform weight changes and translations in space. Re-calibrate the turning and jumping. I understood how to regulate and calculate the physical effort not only through the technical domain but also within the correct use of breathing, of the correct placement of spine and the entire skeletal muscle structure. I learned how to properly move specific chains of muscles, joints, and nerves. I comprehended that each being has different kinesiological abilities and possibilities of movement. Dance practice does not have to deform the individual but instead forms the person from possibilities of movement. Dance is movement, but also knowledge, self-knowledge, and reflection.

And after all this training, I was ready to return to stage. But as life is, there was another test for me.

Another Test of Life: Fighting Again with Death

The new test was one less dramatic in terms of movement, but stronger in terms of illness. Was it destiny or bad luck? On May 24th, 2014 I was back in hospital. (See Fig. 8). The alarm was again the trigeminal headache, was frightful, just like that fatal December 6th, 2008. At that point, I knew it was urgent. I was alarmed. I thought I would have to live the whole nightmare experience again. I rushed to hospital. This time the diagnosis was totally different. I had septicemia, and candidiasis in the lungs that caused an almost fatal pneumonia. Several times I thought, “How unfair life is, why am I at this position again? Why me? Why again?” But I had no choice but to keep fighting. I spent fourteen days in intensive care wrestling for my life. I did not really want to die. I had just returned to my dance-self. I was really angry with the universe, with life, with God, with myself. “How could that be happening to me?” Many times I could feel how life was leaving me in a sigh. I spent three days really battling, crying and screaming, defying destiny. I did not want to die. “Please God, please God do not let me die. Not now. Not now that I had found dance again.” I could feel something divine telling me, “It is not your time, keep fighting. Fight!” Thankfully, the time spent at the hospital was not as long as the previous one. In retrospect, it felt like if everything occurred instantly, although I spent fourteen days at intensive care. That is the magic of memory. It comes to me only through instants. If it were not like that, it would be overwhelming.

Fig. 8

Back to the hospital. Photo archives of Sarahí Lay Trigo. 2014. Description: Photo of a woman in a hospital bed wearing a hospital gown with an oxygen mask looking toward the camera with her swollen eyes.

When I was ready to go home, all I wanted to know was when could I go back to dancing? Perhaps I became annoying to the doctors with my questions about dancing. As a déjà vu, the doctors were not very optimistic about me returning to a physical activity, my lungs were not in condition to perform any kind of exercise, much less, to dance. Once more, I was weak and fragile. I had to spend almost six months without training. By the onset of November 2014, I was finally in position to dance again. This time, I thought, I should start again with ballet. After defeating death twice, I wished to return to the stage. I wanted to dance with pointe shoes and tutus. The image of dance was following me was that of dance as technical perfection. I had to explore classical dance with all the knowledge I had gained from living in illness, my darkness land.

By summer of 2015 I was finally dancing with pointe shoes and tutus as part of d