I was clinically diagnosed at age 16… Severe Epilepsy- Systemic Lupus Erythematosus… Incurable.
I disagreed. I fought. I ignored. I fought. I denied. I fought. I proved otherwise… I was proven otherwise. I fought. I have fought for 32 years…
Aloha, I am Annetta Lucero. I am Epileptic.
I am well. I am strong. I am weak. I seize. I am YOU.
Last night I experienced the most outrageous, intense, FREIGHT TRAIN, potentially fatal seizure of my life.
I am still here today, and I have learned more in one night than I ever expected.
I felt it coming on in Norway, less than 2 weeks ago, when I collected the worst flu I have ever encountered. It continued upon my return to Hawaii and heightened as I arrived to perform at a corporate event only a week after my re-entry.
Weakened, injured and perplexed, I was relieved when my acts were cut due to high winds. I had nothing to give; an impossibility for me… I ALWAYS have something to give.
I have been living with personal pain in my heart for 8 months. Inconsolable pain from the loss of my life partner…
There is no good or bad guy, no right or wrong. There are perceptions, both valid, both insignificant and significant depending on whose version is to be heard— no matter— the reality is as it is.
I felt the tracks in my brain heavily rumbling, I know the feeling, but I kept thinking, this fucker is not going to get me, I’m gonna beat it again…
I heard the big puppy feet of my friend Canoe running to the kitchen and running back towards me. I felt the cold water hit my face and drench my pillow. I was pissed, but I could do nothing. I heard him dialing my mom and felt him put the phone to my ear… “Mama, I don’t know if I can make it…” “Baby, you are SPEAKING to me. Ned, You STAY WITH ME, I’m on my way, Mama is on the way, you keep breathing…” Moments later I knew my heart had stopped and I was no longer breathing.
In 32 years, this is the first time I have stayed mentally present throughout my seizure experience. I recognized the people in the room, I knew MYSELF. I felt my awareness, I knew I was going to live. I chose to make it out. I am evolving.
My mom arrived and she knew the drill, she invented the things she didn’t know, I stayed with her. I stayed with this present moment even as my brain exited stage left. I managed to find breath although there was no air to take in. My heart hurt; but that is not a rarity. We all hurt.
Today, I am elated. I woke up healthy and strong. I made it out again. I am HERE for my children.
Okay, I can accept that. I can navigate this world whether or not I am “Epileptic”. I can see my truth whether or not it is palatable to others, I can present my weaknesses and celebrate them, because growth accompanies them…
I am evolving.
I am capable of — whatever— regardless of my circumstances.
The man with his thumb out was clearly going to smell like Puna, but something about the twinkle in his eyes and huge grin caused me to screech to a halt near the thick patch of hardened road-side lava. He threw his arms into the air, gleefully ran to the passenger side window and enthusiastically inserted his beaming face across to where I was sitting. “MAHALO beautiful being!” he greeted me in a thick European accent. “I am filled with gratitude for you stopping for me. It’s so, so kind and wonderful… ” I immediately liked him, introduced myself and asked “who might you be and where are you from?” He quickly stated, “Ah, Annetta, I am The Shaman of the Universe and I come from My Heart.”
“Well, Shaman of the Universe, I’d really like a shorter title for addressing you; hit me with an actual name”, I bluntly asserted.
He laughed and sincerely proclaimed, “I am Roman, and I am unconditional love.”
He had many seemingly odd things to share during our 15 minute trip, and as I drove away after dropping him off at his destination I thought about his offerings and wondered if I would run into him again sometime.
About a month went by and I was sitting in the office at S.P.A.C.E., where my kids were participating in a circus class. I had experienced a rough day and felt weighted by sadness. Suddenly, I sensed a prominent energy and soon after, Roman entered.
His exuberance filled the small room as he stood before me, eyes sparkling and huge smile illuminating the area. He said nothing, and as I adjusted to his presence I blurted, “how are you so beautiful?”
Without hesitation he replied, “because I am a reflection of you.”
This stunned me.
I had never been greeted in such a way or contemplated that perspective before.
I could not stop thinking about Roman’s ease of being Me, and how my life may be altered if I began viewing others as if I were Them. This concept was stuck in my thoughts and after about a week I contacted Roman through a message. I simply wrote, “May I have time with you for a conversation about life?”
The next day I found myself sitting on a lovely lanai with a man who insisted I only use the terms me or I whether or not I was speaking about him or myself. At first I was quite adverse to this weirdness, but I played along and found it was an exercise that became easier as the hours whittled away. In fact, this simple game on the concept of self clicked a light within me and changed the way I approach life.
Roman and I hung out for about a month, intellectually and soulfully adventuring together on a daily basis. I found myself developing more tolerance for myself and others and learned a tremendous amount. He approached life in ways I hadn’t explored and when I left for a European clinic tour, I was filled with new ideas to share.
Today Roman and I are still very good friends. I am filled with happiness every time our paths cross, and on tough days, I revisit perspectives I came to know because of the concentrated time I spent absorbing his goodness.
I have always had positive experiences with the folks I scoop up off of the Big Island roadways.
…and it should be noted: The Shaman of the Universe, smelled as fresh as a daisy.
My mom dated a variety of losers, weirdo’s, underachievers and perverts who liked the way she looked in her cropped tops, hip huggers and way-too-short mini skirts.
Concerned for her well-being and lack of ability to pick a decent man, her sister Gloria stepped in by inviting us to attend church – a 4 Square, Christian church.
This was a new one for me.
One time previously, when left home alone, I had snuck in a little television watching when I was supposed to have been practicing. Bad idea. I tuned in to a television preacher who was terrifying! He was sweating, spitting and screaming about something called the “tribulation” and detailing the atrocious events that would surely befall humankind. After seeing this, I was wholly unable to control my nightmares!
Now here I was being ushered into the very place where the knowledge of these petrifying events originated. YIKES! I was not an average kid. I knew things and saw things that other people didn’t. I had not yet been diagnosed with epilepsy but I knew I was different.
My first day in Sunday school was uncomfortable. I just didn’t get it- how could all of these people be so happy about being sheep? They were actually joyously singing about being sheep. My mom, who has always had issues with self-confidence, was immediately sucked in. She has always believed she was unworthy of…well, everything, and so church was the perfect fit for her.
“Mom”, I mused, “they all like to be sheep.”
“Honey, this is the kind of stability we need,” she retorted.
I think my mom accepted Jesus in to her heart as her savior that very first day. She was gung ho immediately, and life would dramatically change for us within a few months time. From one extreme to the next, the theme of my life continued.
We faithfully attended church every Sunday and after a brief time period, Wednesday nights became part of our routine as well. This put a cramp in my regimen since I now had to fit in my twirling practice, accordion time AND boring sheep training!
One thing about Sunday school I did look forward to was the memory challenge. I discovered you could win prizes for memorizing scripture and answering Bible questions. PRIZES! In a brief amount of time I had become a virtual Biblical scholar. I won every challenge every week. I could spout out pages and pages of memorized scriptures at the drop of a hat. I became the biggest prize hoarder of all time. It didn’t matter what challenge was presented; I refused to lose.
After a while those scriptures started getting under my skin. I began feeling guilty about the things I did that were less than holy. I began modifying my thoughts and actions. It was almost entirely based on fear, but I must admit, I was becoming more aware of my behavior. These Bible scriptures were kind of like instructions on how to keep from burning to a crisp in hell. I decided it wasn’t so bad and figured it was better to pretend to be a sheep than end up as a human shish kabob.
I am a baton twirler… Okay, stop yourself right there. I know you just conjured up an image of a smiling cheese-ball in a cheerleading costume marching in a parade. Do you really think that all of these hours of practice, sacrifice, blood, sweat and tears I have been alluding to thus far are for the benefit of neighborhood parade attendees drinking beer and cheering on the local senior citizen garden club? PAALLLEEAASE!
I was born into a family of baton twirling nuts. I was raised and trained to live and breathe the sport of baton twirling. I am an elite dancer, and floor exercise gymnast. I can remember more routines, tricks, and series of movement than any math scholar on the planet. I am an athlete, artist and sports psychologist all wrapped up into one skinny, strong, baton-slinging body, and I’ve got big news for you: I am not alone.
For your quick education here is a short twirling glossary:
SPINS = The amount of pirouette turns your body completes under a tossed baton.
ROLLS = The tricks that roll on and around your shoulders, arms and neck. It looks like a magnet is holding the baton there as it twirls.
CONTACT MATERIAL = The super fast, low tossed, flips and whips that build speed in your routine.
BREAKS = Penalty! When the baton stops and jerks unintentionally rather than flows.
DROPS = Obvious. Go kill yourself now. You’ve lost and your mother is coming to beat you senseless.
Twirling was HUGE in the 70’s and 80’s. Competitions lasted for days and were so ferociously stacked with talent that any one of the top ten at Nationals could have been the champion. At the State championships my single age division boasted more than a hundred entries. Just to get to the final round you had to make it through several preliminary age cuts. The top three then moved on to compete against the top three from the other age divisions in that category.
For example, the Juvenile division was comprised of 9 to 11 year-olds. The top three 9 year-olds competed against top three 10, and top three 11 year-olds. THEN, the single champions from each Division would compete against one another for the Grand title.
In the end ONE Champion was left standing as the winner.
If you won Grand at Nationals you were truly a GOD. You were awarded the DIAMOND CUP (a monstrous trophy bejeweled with five real diamonds) and you were plastered on the cover of TWIRL Magazine! (Insert angelic chorus here)… and that was just USTA!
The United States twirling Association (USTA) has flourished since the 1960’s. It was a branch off of the other original twirling organization, the National Baton Twirling Association (NBTA). NBTA is a mega federation of countless twirlers. NBTA was less concerned about “technique” and more focused on speed, tricks and showmanship.
The two organizations were brutal enemies back in the day. It was political suicide to jump from one to the other and the style differences between the two organizations made it nearly impossible to win in both. Only one person had ever succeeded in capturing both Grand titles: Cathy Fujymi. You may bow humbly to the ground now.
Cathy Fujymi was the untouchable deity of my dreams. She lived in my imagination. She was real but I had never seen her. Cathy Fujymi was IT for me. My hero. My fantasy. My reason for daydreaming that one day I might, on a fluke, make the top 3 in my age division at State. My mom told me magnificent stories about her.
“She caught a 6 spin, split leap pull-out on the grass! She has a roll named after her, the Fugymi Roll!”
Nobody could ever be arrogant enough to think that the accomplishments of Cathy Fujymi could possibly be matched. To do that, somebody would have to be strong enough to bust through political boundaries, be ten times better than everybody else athletically, be persistent, confident, superior in every way . . . wow . . . I would have loved to been able to catch even a glimpse of someone like that. They would probably come from a great family with lots of money, they’d have beautiful costumes, a sparkling personality and they would definitely be trained by the perfect coach.
My yearlong sentence to the hell that was Rhode Island ended and my mom, cat and I once again conquered the highway and found our road home to Southern California. I enrolled in my former elementary school, reacquainted with my few friends and trudged forward with my practice regimen and now-tainted childhood existence.
My hair had grown out to a shaggy, who-gives-a-shit length and I can see from photos of that era I had a very haunted look in my eyes. It was a look that even a smile could not disguise. I was no longer a problem in school. I was more . . . invisible.
One day, while on our back patio grinding out my daily twirling routines, I heard the doorbell ring. This was unusual, as nobody ever visited.
I heard a man’s energetic, booming voice and my curiosity got the best of me. Peeking around the corner I saw a man in a funny, ill-fitting suit opening a big black case.
My mom, proclaiming her disinterest, was powerless to stop him. When he pulled out the contents from the mysterious case it was as if the heavens opened and I heard a chorus of angelic hosts lifting their voices just for me. I may have actually seen a giant sunray beaming through the front window, highlighting the most amazing treasure I had ever seen.
AAAAAHHHHHHH!!!! My eyes actually lit up.
The cheesy salesman lifted the heavenly object to his chest, strapped it on and began playing a magnificent polka. That sealed the deal for me. Although I already had practice responsibilities beyond any average 9 year-old kid, I begged my mom to sign me up for the six-week, door-to-door accordion rental and lessons.
Did she give me the If-you-sign-up-you-will-stick-with-it-for-a-year-without-complaint speech? YES. Did she make sure I understood that I would practice this skill for a minimum of a half hour per day, everyday? YES. Did I tell her that I had found my calling in life, I couldn’t live without this divine instrument and I would become the most famous accordion player of all time? ABSOLUTELY.
And so it began.
I loved playing the accordion. I practiced more than my assigned time and I was quite a natural. The small, white, rented accordion was sufficient and I was satisfied with my blossoming music career.
During an outing to purchase sheet music I spotted something that obliterated my contentment. Displayed in a faux black alligator case was the largest, shiniest, most impressive accordion I could have ever imagined. Pearly, iridescent keys that spanned miles, so many black button chords I couldn’t even count them, so large, so beautiful . . . my eyes swirled like a cartoon character.
“MMOOOOOMMM!” I yelled through the store. “THIS is my LIFE! I MUST have it!”
My mom gazed at the atrocious instrument and with a lump in her throat she sadly stated, “Honey, this is $600. We just can’t afford it. EVER.”
Oh no! On the silent drive home my mind was racing. How can I get that king of accordions? There must be a way. I can be sold for child labor. No. How? How . . .
“MOM! I’ve got it!” I squealed with joy. “Christmas is only two months away and SANTA can bring it! Santa doesn’t have to pay for it!”
What an awesome idea! My world was complete again. I just had to wait two months and that magic man would deliver my dream-come-true right to my living room. Now my mom didn’t have to worry. After all, we received food stamps. $600 dollars in two months was more than her hard-earned paycheck could supply. Thank goodness I had Santa!
As the weeks rolled on, my conversation always found its way back to the beautiful accordion. I visited Santa in front of 7-Eleven and described in detail the gift he was to deliver. Knowing how special it was, I informed him I would hold no grudge if it was my only gift.
Things were going great for me.
For some reason my mom was working a tremendous amount of hours and I was able to cheat on my practice chart, completely bamboozling the babysitter who knew nothing about baton twirling. About a week before Christmas my mom sat me down for a serious talk.
“Ned, honey…is there anything else you can think of that you would like more than the accordion?”
Easy answer, “Not a chance.”
My mother blinked.
“Well, I know it is a big deal to you and I just don’t want you to be too disappointed. I think the elves may not be able to build the kind you want. It is very detailed and large.”
I was undaunted, though.
“Oh, don’t you worry mom. Santa will bring me the perfect accordion. I believe it.”
Christmas Eve was exciting. I couldn’t go to sleep. I lay in the hall facing the tree, waiting. I was determined to see how the hulking gift would be delivered. Of course, I eventually nodded off.
When morning came there was a giant gift, wrapped in the most beautiful paper I had ever seen. Even though I knew it would be there, I have never been so giddy. Tearing through the paper my heart was racing. Oh My Gosh! There it was. THERE IT WAS! It looked exactly like the one at the music store! Santa was the smartest, best, nicest, most generous, amazing guy EVER!
I couldn’t stop talking about how great he was! My mom was kind of tired, but had a satisfied look on her face. I tried to motivate her by giving her a lecture on the power of BELIEVING! Then I hammered out song after song in an effort to help her stay wide-awake all day!
I am a believer in magic – the magic and hope in life. I have faith in the unexpected, life altering magic that appears right when it is needed. I never doubt that a new possibility is going to flourish at any moment. My mom gave me this gift of belief. One of the many ways she did this was through Santa Claus.
For me, Christmas was always the most amazing day of the year. Not only did I get material gifts and a visit from the Fat Man, it was the ONLY day of the year I had a “No Practice” pass!
Many children believe in Santa Claus, and many parents conjure up magical scenarios for their children to enjoy; but I have never come across any presentations more convincing than those concocted by my mother. My mom was not blind to the fact that we led a tough life. She knew I suffered in many ways. She was determined to push magic into my world . . . and she did.
The year we lived in Rhode Island was the worst year of my life and so I had many concerns as Christmas approached. Would Santa bring me anything? I had lied to everyone at school about my gender and beat most of my classmates to a pulp. I secretly wished horrible things would befall my creepy, mean cousin. I cursed like a truck driver and I cheated on my practice chart when my mom was unable to watch my every moment. These were unforgivable grievances in my mind and I was sure Santa would not be able to reward my existence.
Aside from my behavior I was terrified that even if he had some small token for me he would not be able to locate me in the tool shed for lack of proper address and I was certain there was no room on the roof for all eight reindeer. Restless and guilt-ridden I eventually fell asleep on that cold, snowy Christmas Eve.
Morning came and my stomach sunk with disappointment. As I had feared, Santa had bypassed my home. There was nothing in the tiny room where I slept. Nothing. As I sat on my bed, filled with remorse I heard my mom’s excited voice yelling from outside.
“Ned! Ned! Get out here right away! Oh my goodness! I can’t believe it! It’s amazing!”
I ran outside immediately and was astonished to see such a miracle. Our shed roof slanted drastically. Carved into the thick, icy snow were very obvious sled tracks! Sled tracks and reindeer hoof prints! Sled tracks, reindeer hoof prints and . . . could it be . . . lots of presents! Stuck in the snow, on the roof and surrounding the shed at various distances were loads and loads of presents!
Obviously Santa did have a difficult time delivering to my home. Although the reindeer could fly they had a hard time floating. Not all of them could fit on our roof, (as I had suspected), and the others simply could not float off the side long enough for a proper delivery! I was overjoyed! From agonizing disappointment to unimaginable joy…that was my life!
The real topper came as I moved along collecting the gifts. A bit of a distance down the road I saw a large, colorful package. I ran to it, snatched it up and couldn’t believe my good fortune. Written on the label was this: To Tommy, From Santa.
WHAT! Not only did I hit the mother load, this extra gift, meant for someone else, had fallen from Santa’s sleigh right into my grasp! HAHAHAHA! What a bonus! What a miracle! I was so grateful. I repented a thousand times over in my mind as I laughed and jumped and yelled. And then I had one quick thought for poor Tommy . . . “SCHMUCK!”
I have experienced a lot of horror in my life. I am not sad. I am not bitter. I haven’t much self-pity regarding the harsh, unfortunate circumstances. I think it may have to do with the amount of love that I received as a counter balance to the evil.
My mom had many issues, including an explosive temper. I was beaten mercilessly on a regular basis. I was also loved beyond measure. In the end, the love has outweighed all else, though the volatile extremes have undoubtedly affected my choices in life. The mixed messages have also caused me to search, study and dissect my own behavior, leading me to a better understanding of myself and the pain of others.
I am grateful for the lessons I have learned through my suffering. I no longer accept abuse for myself but I have been given the gift of compassion towards those who lash out. Nobody deserves to be a victim of those who inflict hurt, not even the perpetrators themselves.
After my haircut I decided I would no longer wear girls’ clothes. My mom was dismayed, but she reluctantly purchased my school wardrobe. I chose button up collared shirts, corduroy pants, and an assortment of boys’ Garanimals outfits. I was especially fond of my blue striped shirt ordained with rocket ships on the sleeves.
With a scowl on my face and carrying my Happy Days lunch pail, I entered third grade ready to destroy all who confronted me. I started with the confused teacher during roll call. As a new student my name was last to be called. Obviously perplexed by the femininity of my name and masculinity of my appearance the teacher hesitantly called for me.
I stared at her angrily.
I held my ground with a mean glare, deepened my voice and blankly said, “My name Is Ned.”
Almost with a sigh of relief, the teacher announced, “Class, this is Ned. He is new this year.”
Ned was the meanest boy in school. I got an unhealthy thrill out of the many weaklings who were afraid of me. I walked around feeling very tough. I would call out fights with anyone in school. I remember hoards of kids forming a circle around a large dirt patch on the playground waiting for the big fight between Ned and the rotten fourth grade bully. I also remember looking back and smirking at the crying bully as I was led to the principal’s office once again.
My mom, who has been such a constant in my life, was simply too busy trying to keep us fed that year to know what was really happening. She received many phone calls from the office stating that I had gotten in to trouble again. She didn’t understand why I was being punished for going into the girls’ bathroom. I should have adapted to using the boys facilities but I really didn’t like the smell and I certainly didn’t want to see them using the urinal! The bathroom problem was eventually my downfall.
Somewhere around the fifth bathroom alert, my mom finally carved out a moment of time to come down to the office. There I sat, looking gloomy as usual.
“Mrs. Lucero,” the principal began, “your son will not abide by our school rules. He is disruptive, mean and continually goes in the girls’ bathroom.”
My mom was silent for a moment, trying to digest this odd information. She finally said, “I don’t have a son.”
The principal continued, “Your son, Ned, is causing quite a few problems here.”
Looking over at me in my button up jean shirt, brown corduroy pants and converse sneakers, my mom finally got it. As I watched the comprehension flood over her face I felt my world come crashing down.
“Ned! . . . Son! . . . this is my daughter, Annetta – and I would hope that she uses the girls bathroom! I will be happy to pull her pants down right here and prove it to you!”
With one swift tug, my career as the meanest boy in third grade came to an abrupt and embarrassing end.
The humid Rhode Island summer eked painfully on.
After the basement incident I decided I wanted a haircut. This was a difficult thing for my mom, as she has always had an obsession with keeping my hair long. She also has an unusual medical condition called prosopagnosia – meaning she does not often recognize faces.
For her, I am defined by my long hair and my voice. I’ve been known to play a funny game at airports throughout my life by walking past her repeatedly, smiling and watching her eagerly awaiting my arrival. I have to step up to her and say, “Hi Mom! It’s me!” and then she excitedly hugs me in recognition. I then tell her how many times I walked past her before greeting her and she always laughs and yells, “you brat!”
Haircut day was a challenge for her. She took me to a random salon and painfully agreed to a cute bobbed cut I had picked from a book. Then she walked out of the salon, unable to watch. As the first heavy chunks of waist-long hair fell to the ground I felt liberated. The hairdresser asked if I liked the length and I said, “a little shorter please.”
She clipped away and awaited my approval.
“A little shorter,” I chirped.
Snip, snip . . . snip.
After viewing the final product, a 2-inch long spiked mess, the hairdresser decided to salvage her creation by giving me a perm. When my mom returned to collect her daughter she panicked.
“Where is my little girl?”
I was sitting right in front of her.
My poor, confused mother. Looking back I can see how she had to force herself to stay positive.
“Oh! Oh! Look how fuzzy and cute you are!” she managed to squeak.
Later that day I overheard her telling a friend, “I simply did not recognize her. I thought I was looking at a little black boy!”
My Name Is Ned Selected Working Excerpts by Annetta Lucero
I was beaten, thrown down flights of stairs and molested in the basement of my Aunt’s home when I was eight years old. The interesting thing about this was the reaction from my relatives many years later when I finally confessed.
When I was fifteen I had a sudden panic attack. I hid under a desk at my mom’s house and sobbed. I couldn’t stop. This was extremely odd behavior for me. Aside from emotional tears of joy displayed during medal ceremonies, I hadn’t cried for years.
My mom was very concerned and perplexed. After much prompting she finally pulled out of me the reason for my distress. Through agonized gasps I related my story of abuse and begged her not to tell anyone. She promised me she wouldn’t say a thing; five minutes later I heard her telling the whole thing to one of her sisters on the phone.
Many years later after I was grown and married, family members approached the subject.
“Annetta, what is this, ‘so called’ sexual abuse story… are you sure you didn’t provoke this incident? This had to have just been a childhood experimentation that you allowed to happen.”