Tag Archives: Familia

My Uncle Spock

By Estela (Probably Part Vulcan) Caballero

Even though the show always said Spock was Vulcan, I was sure he had some Mexican in him.  Side by side pictures of Spock and my dad beg the question, “Might they even be brothers?”  Don’t go nuts Trekkies, I know his mom was human and his dad was Vulcan.  Spock was a weekly visitor into our home.  Sure, it was just a show but we only had three channels, maybe four if we made my little brothers take turns holding the square shaped antennae just right.  The good shows were something we looked forward to.  It’s hard to explain to someone who can’t remember a time when you couldn’t pull up your shows, anything really, at any time.3665471071_0f59d3e248_b

Before I could tell time, I used tv shows as a reference. An old broken watch rested among my most treasured belongings in the corner of the closet.  As my mom would hurry out the door after making us food to eat while she was at work, she would ask me to recite the schedule of what she needed to make sure I did while she was at work.  I would quickly retrieve my watch from the closet and tell my mom not to worry, I knew what time everything needed to happen and show her I had my watch. If the potato processing plant she was working at needed extra people to cover the next shift, they would give employees little or no notice, often waiting until the last hour to tell them it was their turn for mandatory overtime.  There were no cell phones to call and check up on us during her breaks.  We didn’t always have a working land line.  “When________ ends, make sure you check you’re brother to see if he needs to be changed” or “Make sure you brothers and sister go to bed after ________.”  The only time I saw my mom sit still was when she was driving–  that didn’t seem to count since she was driving.  Aside from that, she was on the move always preparing and readying.  She rarely spoke of her own childhood and would quickly change the subject when I asked her how she learned to tell time or what her favorite shows were when she was my age.  I came to understand that I should stop asking.

Star Trek was a marker and it’s possible the reason those old shows occupy a special place in my memories was because they were sometimes the only constant in rough waters.  Spock helped my dad learn English and he inspired me to think in a new way.  He gave my mother comfort. She knew his visit to our home would ensure her youngest got a fresh diaper if her oldest forgot.  I was the keeper of time and in charge during those hours but I was still a child, a relentless day dreamer and my mother knew that better than anyone else.  Spock helped a little Mexican girl watch over her brothers and sister.  A mental map would activate at the first sound of the theme music reminding us all of our pre show duties.  One brother would go grab a bottle for Buddy, the baby.  My sister would drag a large heavy blanket from the room and we’d all climb on after it was stretched close to the rickety table holding the tv.  Certain shows warranted a temporary peace between us and this was one of them.  In order for peace to be real, all of us had to like the show.

The baby  was named Buddy by my father.  Just before my mother went into labor, we were watching a Jerry Lewis movie with a suave character named Buddy Love.   Buddy was number five and by then both my mom and dad had several chances to draw a line in the sand over who would chose the name.  They already had two boys and two girls and Buddy didn’t sound too bad.  She worked all the way up to the day Buddy was born and her maternity leave would last little more than most people took off over the holidays.  She was tired and had only enough energy to firmly convey Buddy was fine but my dad was pushing his luck if he told the nurse Buddy’s middle name was Love one more time.  I was happy his name was Buddy.  When people asked why we called my chubby littlest brother Buddy or “Booodgie” as my dad’s family pronounced it, the story would bring laughter even if they had heard the story many times before.  My mother and father would laugh.  As things went from bad to worse, as they too often do, I would try to retell the story and break the harshness permeating everything from the air to their looks at each other.  Even the silence sought refuge from the heartbreak of a family breaking apart for good.

I learned to tell time that year.  Spock and I grew apart for a time.  The possibilities learned in those days as the keeper of time never left me, even as I eventually joined the masses at the factory myself. I found little comfort in the cell phone tucked in my lunch bag. It was night and my tiny daughter should be sleeping.  At lunch time, I didn’t eat.  I was certain I could work 20 years and still not feel right eating my lunch at 2 am.  Instead I sat there and remembered sitting in front of the small screen, a tattered blanket became a magical carpet.  I got to travel through space and go where no man has gone before.  A rapt audience sat quietly on the floor in front of the tv and couldn’t wait to see what strange new worlds were waiting.  Anything was possible, that’s for sure.

As you can see, Spock is probably at least half Mexican and/or my dad is half Vulcan.  Don’t go all Mendel’s cross pollination on me.  The way it happened or percentages don’t matter–  look at those eyebrows.  I couldn’t photoshop it that close even if I wanted to. Live long and prosper–  and dream.  Dream big, then do it.

Spock Nacho and Spock Buddy

 

 

2014122495114739
Another brother– Jaime Spock with my dad.

 

 

 

About the time I went crazy by Estela Caballero

I was convinced someone was listening to all of my phone calls and my hair loss was a result of poisoned water.  I had gone insane, or so it seemed.  When I finally pulled out of it, I burned all my notebooks. I stopped writing. I was worried if people read my notes they would think I was crazy….I kept the ideas in my head where they were safe from any questioning. I had just been through a rare lupus attack.  Lupus cerebritis, a swelling of the brain caused by almost undetectable inflammation. The truth is I was the one more worried than anyone else about seeming crazy at the time. Everyone else who had been with me through that nightmare of a time understood that there was a medical reason I had begun acting strange that had nothing to do with mental health– it was a reaction to my brain being under fierce attack by my own immune system. That’s what lupus is, a disease born of your own immune system that becomes corrupted. It can’t tell the difference between things like your organs and something it really is supposed to fight to keep you healthy.

I never thought lupus would dare mess with, my brain. I was wrong.  I began to hear things that were not there. See things no one else could see.  I kept trying to book trips to Disneyland and kept a set of packed bags by the door even though there was no vacation planned.  Some of the memories are so unbelievable I had to reread parts of my medical file over and over.  You see, I had memories from that time but because they were so bad, I convinced myself they had been part of a nightmare or hallucination.  I’ve never experienced anything like it before and hope I never will again.

After chemo and aggressive treatment pushed my lupus back into a controllable state I bought a new notebook and picked up where I had left off before I temporarily went mad. I was different before then and afterwards, I was still me.

If there ever was a disease that had the folklore behind it that best fit the magical realism I believed was just plain old reality, lupus is it.  The word lupus is Latin for wolf.  In times past, people who suddenly got a distinct red rash across their face were believed to have been bitten by a wolf.  Stories of witches, ghosts and vampire like creatures that would come into your home while you were sleeping and beat you with a broom across your back or leave purplish welts on your body from trying to suck the life out of you were not dark fairy tales to me.  I heard of the stories in the same manner that other children learned which side of the plate the spoon and fork should be placed when they set the table.  If a witch was believed to have entered your home, this was the one exception where it was acceptable for even the saints of the family to use curse words.  First you could try speaking nicely to the witch and ghosts but if they kept coming back, things got serious fast.  Some ghosts or spirits were not harmful, just lost or trying to communicate something important.  Dreams needed to be told to certain people if they were bad dreams and others if they were good dreams.  Every family had several people who you could call to ask them what they thought a dream meant.  You should also make sure to mention if the pets in the home were acting strangely or if there were any birds outside making noise—  especially if it was an owl.  You didn’t want the dogs to howl too much or an owl ever to visit your house.

I received a my diagnosis of lupus, systemic lupus erythematosus, shortly after having my last child.  Like most others afflicted with lupus, joint pain was the symptom that had plagued me the most. I had been bitten by the wolf many times and the puffy bite marks were more a nuisance than anything I took seriously.  As a young child, the pain was a constant and resided mostly in my legs and knees back then.  Lupus is an autoimmune disease and while there has been an increase in the amount of information on it, causes and prevention are a mystery.  A cure may be a reality in the future but not likely in my lifetime.  For now, I live with the knowledge that my own body has turned on me.  My immune system attacks the healthy tissue in my body.  In my case, there was a serious attack launched on all of my organs.

In many ways, lupus accelerated a learning and appreciation that come to some after the loss of a loved one or as part of the aging process.  At the time I was angry- alot of the time I was angry.  I lost something I thought was fearlessness and I wanted it back.  It was the kind some of us get when we are young and think we are immortal or that death is something so far off in the future it doesn’t seem real.  There were times when I slipped too far near the border of fatalism.  I felt like it was hopeless and there was no use in trying–  I was going to die.  When you’re in the thick of sickness and haven’t yet developed a strong sense of purpose it’s not a big leap to depression and hopelessness.  Yes, we are all going to die.  I’m going to die.  I’m just not going to live like that’s all there is to it even if today is the day it happens.

An early worry after I received the diagnosis was worrying whether my children could get the disease.  Doctors assured me it was not contagious.  Whether that fear is unreasonable or not, I still worry– especially about my daughter.  We fit the description of people that are likely to develop the disease.  Much like the debated nature versus nurture when it comes to questions long asked about what has more influence on the kind of personality or behaviors we display–  what causes lupus, genetics or environment?  The answer is still largely a guess and my guess is that it’s a combination of the two.

Lupus is more common in women, especially women in what’s referred to as “child bearing years” in almost everything ever written about lupus.  Child bearing years is apparently between the ages of 15 and 35–  I’m guessing that future literature is going to have to rethink that term as we see families getting started later in life each year.  The dangers of lupus to both mother and unborn child are great, especially if one doesn’t know they have lupus.  Women with lupus have a higher chance than other women to miscarry or the child to die in the uterus before 9 months.

I’m no stranger to hard times.  I’m usually a great source of optimism and encourage others to seek out the bright side. You know those overly positive people that drive you nuts sometimes– that’s me.   Lupus changed that for a while.  Some days I woke up and felt like I was better off staying in bed.  If any of those full of hope optimists happened to show up that day to check on me, they’d be sorry.  My doctor picked up on the change and after a few of my responses, he jokingly said it sounded like I wanted to be an ostrich and bury my head in the sand.  I looked up at him and said, “Finally, someone who understands me!”  I wasn’t kidding or being sarcastic.  I told the doctor I needed him to speak to my family and confirm that we were all dying so they would stop worrying about me.  He asked what I meant.  I told him that we are all dying everyday– skin cells slough off and make their way to skin cell heaven down the drain and wasn’t it true that even most of our hair was really just dead cells.  We were dying and I was dying…they just needed to accept it.  Dr. Newton continued his exam and I caught him glancing over to my husband and mother who were sitting in the chairs near the exam table.  They both lowered their heads.  My words hurt them and they sat there in silence.  They were not embarrassed at my odd behavior and negative attitude.  They were worried.  None of us knew at the time that my brain was swelling.  It was inflamed and causing me to twitch my fingers at people, say things I would never normally say and most of all, it made me callous and mean.  I had long stretches of memory loss.  I often wonder how much of it was really due to the lupus and how much of it was of my own doing out of selfishness so I didn’t have to acknowledge how much pain those around me were in too.

Thankfully, I pulled out of it.  The physical changes I went through during bad lupus flares were the most obvious part of my experience.  Even though there has been an increase in awareness regarding the importance of mental health, there is still such a stigma attached to it.  Many people steer clear of discussing it for fear of being labeled weak or crazy. I’m not a doctor or psychologist.  I was born into a Mexican family. I don’t speak for all Latinos, Mexicans or people with lupus.  I believe staying mentally healthy is just as important as staying physically healthy.  Part of that requires it to be part of the discussion.  If you or someone you care about has lupus, don’t minimize the importance of mental health.  The experience of living with a chronic disease alone is enough to negatively impact how a person feels.  Just because something can’t be detected in blood work or an MRI doesn’t mean it doesn’t exist.  Keep in mind that some side effects of medical treatment can result in changes in behavior and sense of well being.  Prednisone is a common treatment for lupus.  It is an effective anti inflammatory and large doses can beat down a lupus flare quickly.  The down side is that it can also cause mood swings and difficulty concentrating.  The disease itself can also cause symptoms like fatigue, depression, and even neurological problems including psychosis.  The brain after all is an organ. Lupus by definition is a disease that causes periodic inflammation of and damage to the joints, tendons, other connective tissues, and organs, including the heart, lungs, blood vessels, brain, kidneys, and skin.

After I received the diagnosis of lupus, a floodgate opened and I suddenly had names for all the things I had been feeling for so long. Osteoporosis, Raynaud’s, hyperthyroidism, Grave’s disease, Sjogren’s, and on and on.  The thing is that while the names of what ailed me were new, none of the symptoms were.  They were things I had been living with all along.  Some had treatments available, some did not.  The common denominator was that all of the issues were autoimmune.  Knowing what had caused how I felt did give me a sense of relief and control.  Prior to the first massive flare I had, I had often wondered if it really was all in my head.

After I found out I had hyperthyroidism, I was scheduled to meet with an endocrinologist.  Your thyroid is a small gland found at the base on the front of your neck.  It produces hormones that regulate many of your body functions, including metabolism and heart rate. Mine was producing way too much.  My endocrinologist was one of the many specialists I would need to see several times a month that year. I received a treatment of radioactive iodine to slow my thyroid down before it caused permanent damage.  My body was not playing nice with each other.  Parts that needed to be working as a team had went on strike and were taking direction from corrupted signals.

The town I lived in had a population of about 17,000 at the time and was home to some great medical facilities. The specialists I needed to see were about a two hour drive from home.  In many ways, the economic toll on a family is parallel to the mental health aspect of lupus– hidden and not discussed.  We didn’t have especially reliable cars and had to borrow gas money on many occasions.  One of my biggest frustrations was feeling forced to stop. Until  I could figure out what was wrong with me and how I could get better, I didn’t work.  My dream of graduating from college was also put on hold.  There were days I felt like I was a burden on my family.  It killed me to see my husband sorting through the piles of bills when he thought I was sleeping.  I was going through the cycle of grief– emotional responses and stages that range from denial to acceptance.  It’s a cycle so even after reaching the acceptance stages, there is always the  chance that something can trigger a visit around the bend.  I was mourning the life I felt I had lost.

UV light, from the sun or artificial light can aggravate lupus.  In my case it does and this was hard to adjust to.  I had never considered the need for sunscreen.  We were a family of migrant workers.  My father and mother picked oranges and lemons in the fields of California before we settled in the Pacific Northwest for year round work related to all things apple.  In the fields, beautiful women would protect their faces from the sun with a handkerchief so only their eyes shown.  Our play pen, like many other children in the fields with their parents, was a wooden bin.  As my parents finished a row, the field forklift driver would load the bin me and my siblings were in onto his forks and move us to a shaded spot closer to our parents.  I can’t even imagine the bewildered look my father would have given me had I ever asked for sunscreen as a child.  Being outdoors was a huge part of who I was.  I worked outside as much as possible and loved to garden. Early on, in defiance, I would go outside sans protection.  My mindset was “I’ll show you!”.  I soon accepted that the only thing I was accomplishing was a short lived sense of illogical satisfaction.  That feeling was soon replaced by the realization that I was only harming myself and my family– I wanted to get better and they didn’t want to see me sick either.   I started wearing large hats and bought more than I ever would need.  I proposed moving to England so my new fashion pieces would fit in but couldn’t convince my husband.  He supported the hat buying and the bad fake English accent I spoke in when wearing my hats but felt moving to another country was a little extreme.  He didn’t get my “I’m the Queen” jokes but laughed anyways.

Life went on.  We celebrated birthdays and holidays.  We celebrated life.  Woe is me was tucked into a corner of my heart.  It was an important and necessary part of my journey.  I am blessed and have purpose.  I’m singing my song and woe isn’t part of the chorus.

A Message To The Future by Estela Caballero

benita and estela (2)

Once lost on the road

That one to nowhere

Running and moving

But going nowhere

Cruelest illusion

I was wrong

Unfair

 Mistake movement for progress

It’s likely we’ll share

A cab on the road

Up the hill

To nowhere

Telling the world

To please hurry up

Exhausted, busy

Rushing, rush, rush

When will we get there?

Wait, that’s not the way

Beware of that beaten path

Be careful

Don’t stray

Join me

Now hurry

No time to spare

No light at the end

Are you certain

It’s there

Wait, wait

No, I can’t

I won’t

So don’t wait

Green rolling hills

My star awaits

Go if you must

Rush to nowhere

Mi madre querida me dijo asi

It’s fear that drives people

Their lives

It seems

Fear that makes people

Forget about dreams

Better to walk

A path not yet known

Better to live

Something you own

Fear owns the people

I’m one of them

You little daughter

Are stronger

You’ll win

Your heart made of things

I gave away

To ready your journey

And chase fear away

Abandon the road

The rush to nowhere

You have a place

A beautiful somewhere

Down, down soft green hills

Never too late

Take flight my baby

Nowhere can wait

The Story of We by Estela Caballero

Tell me the story

of the night

of the morn

when they walked in the fields

picking the corn

laughing and dancing

the dance of their life

bitter and sweet

tell it

then cry

let it all out

then say goodnight

Tell me the story

when he dreamt in rhymes

they live again

in the song

in the lines

the story of them

it’s yours

it’s mine

organized-chaos-by-estela-c

Photos by life– soy sangre de esa sangre.

Art: Organized Chaos by Estela Caballero ❤

 

Autism Tales: Brothers

boys

“Someone wants to be just like you.  Don’t let them down.”

    –Unknown

Mikey is just a little more than a year older than Gustavo.  They’ve alternated as tallest between the both of them for several years now.  A few days ago, one became even taller than dear old dad.  My husband still denies it and blames it on Mikey’s thick head of hair.

Mikey is on the left.  Gustavo is his little brother and I believe his desire to protect and help him would have been there no matter what.  Because they are so close in age, Mikey doesn’t have memories of a life before his younger brother was around.  He doesn’t remember the times we talked about autism in hushed tones because we didn’t know what it meant or how to respond to people who gave him that look when he was behaving differently.

Yes, some brothers are close.  Mikey turns 18 soon and will be an official adult.  I have a feeling that no matter the age, he will always have the friendship and love of a younger brother he kept close under his wings.

The Beating by Estela Caballero

Domestic violence is one those things you can’t fully understand unless you live through it.  This was a lifetime ago and my escape gave way to a new future.  Some things lost forever in that once upon a time–

The Beating by Estela Caballero

Ever impossible

Thickness of night

Hit me again

With all of your might

I’m alive

Not your property

I’m alive

I can fight

Long sleeves and a smile

Hide our lovely night

Restart the ritual

Tell me you’re right

Say sorry, beguile

The last that I prayed

Was for life but not mine

It started, a whisper

Like wind in the trees

Within me beat hearts

My own, times three

In silence I screamed

Within me grows now

A new great start

And your final bow

Ever impossible

Watch what I say

This isn’t a life

You’ve had a bad day

A fear stirs within me

Great starts fade away

Two little starts

I never could say

You’ll be safe little babies

Till the end of my days

Question the logic

Judge what you don’t know

I’m haunted by knowledge

That you’ll never know

Ever impossible

Step into the light

This little girl no longer hides

Hit me again

It will take all of your might

Photography and work on 4utu.wordpress.com is original work by Estela Caballero unless otherwise stated.