Grace alone by Faith

My name is Robert Escandon. I was born in California in 1973.   I am a believer in Christ Jesus.  I also live with cerebral palsy (cp). I am a left-handed warrior in Christ.  I've lived with cp most of my life. I am in my 50s.

 

 

I was raised Roman Catholic.  I realized this as I witnessed my older brother, Rick, taking classes at our local parish in California; I was about 3. I have three brothers, Rick, Gabe and Sal; no sisters.  We moved to El Paso, TX in 1982, I wasn't even 10 yet.  I knew about God, Jesus on an elementary level. My parents taught us the bible when we were young.  We'd watch The Ten Commandments and other Christian specials. 

I was born but later developed (spastic diplegia) cp.  I wasn't born prematurely, however, through Cesarean section. I wasn't in the correct position when I was to be born and the umbilical cord was wrapped around my neck.  Although the doctors noticed there was something abnormal, I was allowed to be taken home. At two months I was taken back to the doctors for, what is now known as hypothyroidism. During my visit, I was taken to the hospital because I had difficulty breathing which affected my brain through a lack of oxygen. This lasted a couple of weeks (on and off). I was given last rites before the answer was discovered. (As a result, California began testing all new babies for thyroid problems.) I came home with cerebral palsy but as a baby, the cp was hidden. It was when I began missing developmental milestones like sitting up and staying up and walking on my own that my parents took me to physicians who was treating me for hypothyroidism, at the age of two I was diagnosed with cerebral palsy.  The prognosis was that I was going to be a dwarf and mentally disabled. The physical therapists (PTs) had to rule out other types of cp as they determined my relative ease to write my name at age four, ruling out quadriplegia. At four years old, the type of cp was diagnosed as spastic diplegia. I walked with a walker, then with metal braces until November 1981 when the PTs decided I no longer needed them; this was prior to moving to El Paso, TX. 

 

When I was 7-11, I grabbed two long socks together, tied them to produce a much longer "sock". I grabbed both ends of the sock and looped the other end around my foot while sitting. I then pulled my foot into position. Then I relax the foot and try to do it without the socks. I'd repeat it several times. As time went on (years), I was able to move my foot more until I could do it without assistance. Simultaneously, when I sat for long periods, like school, ever once in a while I'd move my foot with my will not my hands. This became a habit enough to where I rarely had to reposition my foot; it became automatic. Now, I don't have to consciously think of it as much. It still does pronate but most of the time, it's as I sleep. When I wake up, I don't need to stare at my foot and concentrate like at the beginning. I know it repositions itself because sometimes I can feel a pop. That pop though could be because I'm getting older.  Right now, it takes more effort to revert back to how my foot pronates, or even to allow it to relax so it pronates on its own.   I think what happened is that the physically repositioning coupled with mentally willing it into position redirected the nerve cells to fire differently so it can be possible to maintain a correct position automatically with years of retraining the brain - as an adult I learned its name: neuroplasticity.  I was doing neuroplasticity before I even knew its name or if it was possible. I did many exercises with and without the PT.

 

 

 

 

 

 

 

 

 

 

 

 

The way cp affects me is the muscles in my legs are tighter or spastic than a non-cp person's.  This tightening of the muscles, particularly my legs, makes my body move in jerky or spastic movements; this may make me appear to have a limp or when I was younger I walked much more differently than the average child. I wore metal braces on my legs and shoe insoles most of my childhood, as you can see in the picture above.  I also have balance problems; it's very easy for me to fall on my own and strong winds can also be a culprit. My muscles get tighter during the winter months because of the cold. 

​

As long as I've been alive, I'd have cuts on my knees and elbows from falling.  On occasion, my muscles move involuntarily giving the appearance of being startled.  I must be honest, I get more startled at the involuntary movement than what seemed to cause it.  Some people say it's the Moro reflex; a reflex present at birth that goes away in children with no cp.  However, children who do have cp often keep the Moro Reflex probably due to the part of the brain that normally stops it is damaged and therefore cannot stop it. My body reacts to touch as if it hurts, however, I have been blessed with a high tolerance for physical pain; it doesn't hurt me if someone touches me.  There are two reasons for this one of which I will get into later. 

Not everyone with cp is the same and those who have been diagnosed with the same type still differ in severity and other factors.  (Not everyone with cp still has the Moro reflex). Let's not forget, I have a low active thyroid (hypothyroid) which is congenital and I have above average hearing. I was also born ambidextrous, however, for fear that I would be seen as a "freak", I was taught, through conditioning, by teachers to use only my right side.  Despite my diagnosis being diplegia, meaning it affects the lower half, after living with cp for more than 40 years, I know cp affects my entire body, involuntarily and voluntarily.

Here is some cerebral palsy awareness: 

 

 

 

 

 

 

 

 

There is no cure only treatments. Cerebral palsy is defined as brain damage to the region of the brain that controls muscle movement and control.  Since it is damage to the brain, it is permanent.  The damage is irreversible (by human standards). However, through neuroplasticity, the muscles affected can find new pathways to give the appearance of improvement, the physical movements may improve with retraining the brain.  Unfortunately, there is no money into treating cerebral palsy. There is no cure but there should be funding for preventing cp.   Each person with cp can generate about $1.75 million a lifetime into medical costs (there are approximately 17 million people with cp in the world. U.S. 640k.), physical therapy costs, occupational therapy costs, pharmaceutical costs, other miscellaneous costs depending on the severity of cp, individual needs and if there are other concurrent conditions or disorders. Some point to stem cell research since cerebral palsy is a brain disorder. I have found that consuming alcohol loosens the muscles and perhaps the brain controlling the spasticity of my leg muscles. However, I cannot nor will not pick up a habit-forming addiction to walk better; it's a big cost to bear but I'd rather walk the way I do than walk better and become dependent on alcohol.

 

Writing and speaking about cerebral palsy awareness is not about feeling sorry for oneself.  It's also not about "CP pride".  Pure and simple, it's about awareness.  Believe it or not, there are some people who make life more difficult for those living with cerebral palsy without taking into consideration or having empathy towards the difficulties and challenges we face every day without bullies or unkind actions of others. In awareness, I hope to bring information, some life experiences in dealing with some difficulties and challenges that I either hope to accomplish or have overcome. 

 

My final hope is to bring awareness so that I can have better communication and relationships without the awkwardness of any misunderstandings or unanswered questions. I'd rather talk about cp than to have uninformed stories or rumors, misunderstandings and misconceptions about cp; you may have known someone else with cp, however, as I've said before, every individual with cp is unique - even those who have the same diagnosis. I'm usually eager to answer any questions as long as the questions are asked respectfully.

 

As with everything in life, change happens. On its own, cerebral palsy doesn't improve or worsen throughout time.  However, with physical therapy, the symptoms of cerebral palsy can improve. I'm talking about the spasticity in the legs can loosen a bit with stretching.  The damage to the brain can never be fixed with today's technology.  I am currently experiencing changes regarding aging with cerebral palsy, therefore, a report about that will come as I learn about it myself.  Everything about me has changed: who I am, my beliefs, maturity, my independence, living situation and employment; including cerebral palsy: the way I walk or gait. When I was a child at school, the way I walked was that I dragged my feet. The weight of the metal braces would bare down at the end of the day. My knees would lock and rub together at points and separated awkwardly which caused me to fall for different reasons: balance, trip over my own feet, being pushed, either on purpose or accidentally. I underwent physical therapy, which helped with my walking. When that stopped, I started taking karate to substitute for physical therapy. Karate helped my walking in much better ways that traditional physical therapy did.  

 

 

 

Although I had difficulty at the beginning of this new form of PT, karate, I learned how my body works and traded off the high kicks to midsection kicks, what I had difficulty doing on my right side, I made up for it on my left side. In karate, I made it my PT so I began stretching out my leg muscles, not necessarily so I can kick higher (though that did happen), but so I won't have so much tightness in them as I sparred with other students.

 

I stood in certain stances for long periods of time so I can both strengthen and stretch out my legs. I sat on my toes so I can pull them back when executing a front snap kick. Positioning my feet in the correct posture so I won't injure them was also a challenge; a challenge I overcame with time and grabbing a couple of long socks tying them together and pulling my foot into the correct position. I made sure I fully extended my legs when executing back kicks, side & front thrust kicks which were difficult for me at the beginning, however, the more you do it, the better you get. The weather does affect the cp: winter cold makes my muscles tighter making it more difficult to walk while in the summer heat loosens them up.  Fast winds are also a problem as the gusts may be as effective as a push from a bully.  I usually use a cane and park closer to the building when that happens.

 

When I lived in California I rarely experienced bullies.  The schools were much more tolerant and the children were also.  I experienced the climax of my problems with bullies in middle school in El Paso.  It actually started in the 5th grade with lone bullies; this was before I began taking karate.  I started the fifth grade at Robert's Elementary School.  The fifth and sixth grades were set apart from the rest of the grades as we occupied the two-story building.  There I met a friend who I would regroup with in high school.  Although I tried to convince the kids at school that there is nothing wrong with me, they seem to enjoy mocking me and pushing me down.

 

There were teens who saw the way I walked as weakness and they began teasing me.  It first started with making up stories explaining why I walk the way I did: "he was in an accident", "he was hit by a bus" to "he has muscular dystrophy" (because another student had it) or that I had some unknown disease and whoever touches me gets it. When they saw that calling me names didn't anger me, they changed their tactic to physical bullying.  Frequently, a bully tried to harass me by pushing me down (to see me fall) and/or run around me just out of my reach because they knew I can't run. I say "tried" because the bullies used a trial and error method when bullying me; once they saw that I can protect myself against 3 persons they stopped.  In the 6th grade I had double the amount of bullies, but again they all comprised of lone bullies.

 

Threats of silence came as they found creative ways to bully me. The bullies would sometimes team up and push me down and tell any teacher that saw me fall that I fell on my own. It became apparent that I could successfully defend myself against two-three people at a time in the middle of the sixth grade.  I had to defend myself on a daily basis yet still come home with bloodied knees and elbows. I learned how to avoid them by walking next to walls where they couldn't sneak up behind me and push me.  I learned to look at reflections, shadows and listening; the bully would often tell someone they are going to push me before doing so as a way to show off. I did see teachers looking (me being pushed) yet did nothing.  The adults turned a blind eye and the other kids didn't befriend me.  I became a loner; the scapegoat.  If the bullies were targeting me, no one wanted to be included in that target.  However, I had successfully ended the 6th-grade year with no bullies.  I still had no friends but I looked forward to starting over at a new school the following year.

 

Matters got worse when I advanced into a middle school campus. As it turned out, one of the bullies I had successfully defended myself against was related to a member of a large gang. This group of 15 wasn't the kind who was at school for learning; they were there to cause trouble. As a result, most of them dropped out of school prior to high school either because of expulsion or giving up on education (I learned this later). On the rare occasion, they did get in trouble for bullying me (2 times, when it was witnessed by a higher teacher and another time my parents got involved), they were constantly getting into trouble for all sorts of reasons; at that time I wasn't worried about all those troubles, I was just concerned about what this group was doing to me.

 

There was no escape; by the mid-7th grade I was targeted by this group of kids because of the way I walked (the fact my balance wasn't entirely in perfect order, they can push me and if anyone saw they just claim I fell on my own,) and that I couldn't defend myself against 5 at a time attacks. They would gang up on me and push me at each other, they would push me directly to the ground and other objects. I remember I was pushed into a machine that could have seriously injured me. It was some kind of press for leather; the weight of it could have killed me if I had been pushed into the table that supported it.  The teacher was angry at me after I told him someone pushed me. (This was the incident my parents got involved in; the bullies did slow down a little after that incident but then picked right back up after some time had passed). The bullies discovered they can do a lot of damage just pushing me rather than punching and kicking me to submission and I had to up my game so I can protect myself.  They also threatened me to silence as they'd grab another kid and beat him up or ram him into a poll. To top that off, I occasionally was harassed by lone bullies simultaneously.

There was one in particular who was a year younger and lived in the same neighborhood. He pushed me several times, several different instances once the bus left as I'd start walking home. I wasn't a person who enjoyed having to defend myself so it took a lot of abuse or imminent danger for me to act out in self-defense. For example, one time I was riding my bike and the younger bully corned me with three others and to show off, he began dance fighting with me. I saw no way out so I grabbed him mid air (as he attempted fly kicks at me; he actually got frustrated that I didn't stay in one place and allow him to kick me) and threw him to the ground. I punched him several times, took my bike and walked through the other kids without conflict with them.  Sometime later he threw eggs at me but the eggs "bounced off" me and they hit others.  The bully became the bullied after that day (not by me but those whom he hit with the eggs).

I was the loner, the scapegoat again. I had no friends; the friends I managed to make in the few months before the bullying started, disappeared; I sat alone at lunch, I walked alone in the halls and I waited alone for the bus to take me home. I remember one time a girl asked me what I had done to set the group off. At the time I thought it was the stupidest question ever: why would I do something the whole group of 15 when I know I have a disability that once made me a target for harassment- yes, I did think this (age 12-13).

 

I endured for a couple of months before I asked a teacher to send me to the principal's office for fighting back. I told him about my troubles yet nothing was done to disciple these kids from harassing me. I did what I could to get the adults involved but they didn't do anything. I saw teachers look in my direction while the bullies held me against the wall but they turn their attention to someone who was "running in the halls" to stop. The group scattered at the sight of a grown up at first but later, they learned that the adults didn't do anything. The type of bullying wasn't just physical. They bullied me when I participated in class. It seemed that they didn't want me showing that I am smarter than they are so after the class, whoever was in the class with me pushed me into lockers, or doors or whatever they can find and warn me to keep quiet, not to say anything because "nobody wants to hear from a chueco [cripple]". I'd come home with bloodied elbows and knees from defending myself.  Today, if I had constant injuries, my parents would be questioned for abuse.  The teachers were trained to notice, however, since the adults at school knew exactly where and who was inflicting these injuries on me and it was happening on their "watch", they very well didn't want to bring it up.

 

Five months before the end of eighth grade (age 14), I didn't have anyone to talk to; no one talked to me, I had no friends. Girls didn't talk to me; they didn't even look at me. I was attracted to girls even though they would say mean things to me like, "you're just half a person," "can you even like me back?" "why are you being such a pervert?" (being called a pervert numerous times for appropriately being attracted to females was a shocker), "you're embarrassing to me,"; the word "embarrass" came up many times. This word followed me all my adolescent/adult life.  It's like females can't think of using a different word and they can not explain what embarrasses them when I ask; maybe I can change it.) If a girl did talk to me, the bullies mocked them by saying that my babies "would come out chueco like me," or "we'd have little chuecitos walking around."  Now, I realize that there has been absolutely no woman who has ever rejected me for who I am; to put it another way, when you ask a woman who has rejected me, none of them can tell you a character flaw that I have as the reason why she rejected me.

That word [Chueco] was used to dehumanize me- make it easier for rubber-neckers to not get involved. No one referred to me by my name in school but as "Chueco". Being called chueco as a name was like in English being called Cripple. Being referred to as "what I can't do" or by "disability" is a powerful way to dehumanize me whether they knew it or not.  I saw kids looking to see what was happening then turn away once we make eye contact. Being dehumanized, noticing everyone seeing what is happening to me and not doing a thing, there was no eye contact (other than I just described), was a day by day event for two years. I began to think about killing myself. In a way, knowing the others saw what was happening yet allowed it by inaction told me that everyone condoned it; there was a "better him than me" atmosphere. The adults were not helping either, even after I went to them for help; I thought I did all I can do. One time I was threatened with expulsion if I was to fight back. It was easier to kill myself because dark thoughts of dehumanization became an everyday occurrence. I thought of specifics like how to do it, whether I should leave a note; plans were already taking place and I began to write this note. Then one day, before spring break, coming to school people were talking about one, that he had killed himself. He was my age and happened to be in my phys ed class. I didn't know him, most likely because I had problems of my own but I remembered after.

 

Through the middle school grapevine, I heard that he was targeted because they thought he was gay. After he committed suicide, I heard many kids saying that they knew him and that they were friends. I thought right away if so many knew him, why didn't he feel so left out, why didn't he go to anyone for help, or did he?? I remembered finding out that he was being bullied by the same group of boys that were bullying me.  I knew my thoughts dwelled on if I were to kill myself that no one would notice because no one talked to me or even looked at me. I was known as "Chueco", "the cripple" not by my name; this came to be confirmed when years later a girl came up to me in college and asked me if I went to Lincoln Junior high and she said she recognized me from my walk- she had to run a distance to catch me (there was no mocking in her tone, she was genuinely wondering). And there was another who worked next door to the psychologist I went to years after the college event. She, too, was curious if I was the one- she claimed she would see me go in for months before getting the courage to ask and recognized me by my walk. That word was meant to take away my humanity, as it apparently did because, the two women, didn't even know my real name.

Back in school, I was being treated as a ghost (a term we now use openly to describe being treated as though one doesn't exist), as I was thinking, why not become one. I began not seeing myself as a real flesh and blood person so it made it easier for me to throw myself off a building or walk in front of a bus or car or the middle of I-10. I had no way to get a gun or any other type of weapon so that was out of the question. (The only exception was my cousin, who was in the Army so I could have looked for something through him.) I even thought of over-dosing on my dad's high blood pressure medications or just take as many different kinds of meds to have them kill me. But all this stopped when I was hearing the lies about knowing this kid, someone's child; when retrospective memories served, he was like me; a loner and perhaps another scapegoat. See, I didn't want people to lie and say they knew me when there was no eye contact, there were no "hi's"; after I was dead, I can not retort.

 

No one acknowledged my existence for fear that he or she would get bullied also (maybe), so I was a scapegoat again. I was the one, or one of two, who was taking all the abuse; being dehumanized by one word and by inaction, being physically and intellectually threatened and abused.

At the end of the eighth grade, (age 14) I was already thinking about bettering myself. I believe the Lord threw me a lifeline at this point. For months I kept hearing a commercial for a new studio and it seemed to stick out. I finally went for it. I began learning karate. Though at the time, I thought I was taking these classes so I can defend myself against the bullies, the classes were really for physical therapy and it helped my confidence. By the end of the summer, I must have looked like a new person.

 

There was virtually no bullying and the ones who tried were scared off by something. I was no longer the target, no longer the scapegoat; I still had cerebral palsy.  I could defend myself before I took karate but now I was trained more intensely.  As for the group of bullies, most of them dropped out of school by the time I moved to a high school campus. Back then, 9th grade was still on the middle school campus which meant that 6th grade was taught on an elementary campus. I still saw the tormentors that made it to high school (very few) but they were no longer interested in bullying me. I said, "virtually" so not all bullies were gone but now I had to deal with lone bullies, bigger and/or stronger ones.

 

One, in particular, was the high school football star. He got a free pass at bullying me; by this I mean the adults would threaten to take away his football privileges but never follow through and he knew it. He was the only constant bully in high school; all others were temps once I showed them I wasn't going to be bullied. He did have a small friend who teamed up with him to bully me; however, the little one tried to bully me once, by himself but was unsuccessful.  He tried cornering me in the restroom. I felt something trying to pull me down again but I didn't allow it. I went to the principal who directed me to the vice principal who told me that he can't do anything about it unless my life was in danger. As it turned out, this bully was a danger; soon after high school, he was convicted of armed robbery. If I would have fought back, it would have ignited whatever it was in him that was violent and be a clear and present danger to me and others.

 

When I entered Coronado high school I met a friend I first met in the fifth grade.  He was the only friend I had during high school, everyone else was acquaintances.  I met his sister.  I didn't know I was walking into a war zone that both my friend and his sister were casualties of; however, my friend tried to keep himself from feeling the pains of divorce.  His sister, on the other hand, was more traumatized, not only from the divorce but from other experiences before me. 

 

During this time, I thought I found a girl who genuinely cared for me and I based this on what she actually told me. In other words, she was acting; years later I found out that acting was her lifelong ambition. Little did I know she didn't see me as a person but in fact was acting out what had been done to her (these are not assumptions; everything I say here is from what she actually told me 20 years later in a series of emails and she doesn't nor do I excuse her behavior.) I didn't know it was abuse at the time, the talented abusers can mask their intent with kindness and a false sense of mutuality. After the abuse had stopped I went into a deep depression. Although I didn't have all the answers, I felt deep inside me that there was something much more damaging at work than just an attempt of love that failed. (Years later I found that there was no love in what she did what-so-ever.) I felt urges that I never felt before; the urge to touch and be touched- I never felt these in my childhood so I concluded (before emails) that these urges had to come from what had happened.

 

She did give me a hint before she stopped talking to me that she was abused in her fifth-grade year by a group of boys (which was modified slightly twenty years later to she was groped and forcefully kissed by the boys at her school as they played a "dare" game.) I vowed never to touch anyone the way she touched me because I didn't want anyone to feel the way I felt, especially if I was thinking about suicide; what if that person actually does commit suicide: I would be responsible. The months after it all stopped two-mile stones passed; 1. I turned eighteen & 2. I graduated high school. I was ready to embark on a new adventure: college. However, my damaged soul couldn't bear. Thoughts of sexual abuse plagued my mind to the point that's all I thought about. My college grades suffered. She also disappeared, I haven't seen her in person for 7 years but didn't speak to her for another 3.

    The spirit of a man will sustain his infirmity; but a wounded spirit who can bear?  Proverbs 18:14 (KJV)