Lupus & Me: The Mask

It’s one of those things that seems like it was forever ago and just yesterday all at the same time. I was sick and had a diagnosis.  I had lupus.  Finding information– that journey started off old school like– at the library. Not a digital library, the public library. I had overdue books and had lost them so I couldn’t check anything out. I sat there and read for as long as I could keep my eyes open.

I kept finding references to butterfly rash, the wolf and the mask. The two types of lupus I read about were discoid and systemic. You can have one or the other or both. I have both. After I discovered that my sad looking face was crusty with butterfly rash, I was disappointed. I had high hopes for something with the word butterfly in it. The shape of the rash sometimes resembles a butterfly. The body of the butterfly usually on the nose and the wings across each side of the face. This was not a beautiful butterfly.  My face looked blotchy red and the patches on either side of my nose would toughen up and take on a leatherly puffy texture that was as unbutterfly as you can get.

Growing up I was the only Mexican I knew that had freckles. My father and his father had the deepest blue green eyes. My sister and three brothers were all blessed with those eyes. I was the freckle faced brown one. I was freckled, loved and beautiful in my own way. When one isn’t blessed with apparent physical beauty, it’s not always a bad thing. As I was growing into my ears and teeth, I developed a talent for making people laugh. I would do the Pee Wee Herman dance or imitate one of my funny relatives. I could sit at the feet of the adults for hours listening to them talk. I knew that if I wanted to listen, I had to stay quiet. I loved the stories I would hear. They knew all us kids were listening and would throw in some of the old classics like the Llorona. Without fail, at least one of the adults present would tell of the time they encountered the Llorona.  There are many variations of the story but they all include a lady who haunts places while she cries a horrible wail.  She is crying for the children she drowned.  The Llorona divided her time searching for her children and fulfilling countless threats from my aunts, mom and older cousins to come and scare us if we didn’t behave.

Remedios, home remedies and speculation of what was causing illness among the family was another common topic after scary stories. Could it be Ojo or the unspeakable brujeria? My early days of lupus were filled with attempts from loving family and friends to cure me using remedios.

I was prescribed a tomato mask and tomato shampoo for the rashes and hair loss. Many prayers mixed in as the cures were applied. Eyes like hawks would ensure I was being a good patient. When the hawks left the room, I was left in the care of a glossy wooden frame graced with the Virgin Mary. I do not consider myself religious. My family said the Virgin wouldn’t mind and to this day she is on my wall. Did the remedios help? Who’s to say they didn’t?


Originally posted on 4utu:


“Don’t spend your life waiting for the right moment– sometimes it’s waiting for you. Take a deep breath. Jump in. Do it. Even if it’s kind of scary.”
–Estela Caballero

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Originally posted on 4utu:

If perception is reality, here’s to making your own!  The two pictures below show a Dahlia, the same flower, just seconds apart.

Fresh Looks

Definition of perception (n)


[ pər sépshən ]

Perceiving: the process of using the senses to acquire information about the surrounding environment or situation

  1. result of perceiving: the result of the process of perception
  2. impression: an attitude or understanding based on what is observed or thought

I’m not that great of a photographer.  It’s the lessons and the insight gained that keep me interested.  I get lucky every once in a while and take a shot that amazes.  This one of the Dahlia flower above isn’t one of them.

I had been cutting off the flowers run over by the lawnmower wheels to give the buds some additional energy for the short lived blooms.

It was still a beautiful flower laying there on the gravel.  I picked…

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It wasn't just my dream anymore.

The song by Estela

The relationship between parents and their children is golden at it’s best. The dynamic changes with every new generation added to the family tree.  I have wonderful parents. They fought to give us a better life than they had. They did their best. It’s a challenge to picture them as children. In my mind they ever will remain larger than life. Neither of my parents grew up in families where pictures were commonplace. When faced with choices, developing a roll of film probably never made it to the top 10. They struggled with basic necessities for most of their lives. Aside from not having actual pictures, neither speak much about growing up. I was always afraid of bringing up painful memories for them so if they didn’t share, I didn’t ask– until recently.

I was speaking with my grandmother, the mother of my mother. On her last visit here, she had asked me if there was a way to get some songs for her and record them on a CD. She’s not ready for the little music thing– that’s what she calles the iPod. I grabbed a piece of paper to write down the names. Some were songs I remembered hearing when I visited her as a child. My grandmother did not have an easy life and it extended into her adult life. There were some songs missing from the list that I remember her saying she hated. They were the songs that would play loudly to mask sounds she wanted to protect her children from hearing. The titles were fitting– one of the songs was called Please Release Me.

Sometimes it’s easier to ask grandparents things. At least that’s how it is for me. I see the ease and comfort my own children have with all of their grandparents and there have been times, as a parent, I’ve been envious.

My grandmother added one final song to the request. Bill Anderson’s Five Little Fingers. She said this was my mother’s song. It was the song she played the day she brought my mother home from the hospital. Her birthday song.

My mother is the eldest. At the time my mother was born, I’m not sure if my grandmother fully grasped that she had entered a phase in her life that would break most people. She endured and overcame. Her strength and blood flow through my veins. If science ever pinpoints the gene for resilience, spirit of fire and strength of character, I am certain my grandmother and mother have at least twice the normal amount.

A few weeks after I had made my grandmother her CD, my mother came to visit. I asked her if she wanted a copy of the CD I had made for my grandmother. I excitedly told her it had her birthday song on it. She looked at me with a confused look and said she didn’t have a birthday song. I told her about the list and the story my grandmother had told me. It was a story my mother had never heard. She was moved to tears for more reasons than I will probably ever understand.

I’ve recently embarked on a new journey. I am honored you have all chosen to be a part of this adventure. The specifics of each family are different and special. However, I suspect that there are many of you that have a story you need to hear and a story you need to tell. Just as importantly, there is someone who needs to hear that story from you.

There is a radio program called StoryCorps that provides the public with prompts to help them find a start to their story. An easy way to begin a conversation you’ve been dying to have. I invite you to use my post today as a way to help you find your voice and perhaps find the chapter in your life you didn’t know was missing.

Here are some questions to get you started. Remember those grade school assignments you would have to take home and interview your parents…..

I’d love to read your story. Post in the comments section if you’d like to share. I am not a professional writer. I butcher sentences and grammar. Don’t let that stop you.

For Parents:

How did you choose my name?

Do you remember what was going through your mind when you first saw me?

The picture above is of me in the middle with my mom and grandmother.

Here’s a link to a complete set of questions:

My favorite question isn’t on the list but feel free to use it– “What’s my birthday song?”

Bedtime jumping

Instruction on enjoying life

I recommend being a monkey at least once a week.  Jumping should be a daily occurrence.

I used to dream I would be a writer one day.  Another dream, to be an artist.  I wrote and I created.  I stopped saying “one day”.

Bedtime jumping

Artwork and instructions to enjoy life by Estela Caballero.


Look Up

Originally posted on 4utu:

I was lost and running out of time.  Even though I still had three hours until I needed to board the plane, I still had to return the rental car and check a bag.  Back home, I could navigate well enough without GPS– no cell reception, no problem.  I’m a landmark driver– you know the type. If you don’t know anyone like this, there is a good chance, this is you.  Directions usually go like this, “Take a right at the gas station, the one next to the pizza place, not by the school.  Then go to the road Maria’s mom and tia live on until you get to the second light…”  This was different, I was in a large city and the landmarks I made a mental note of when I first arrived were not helping.  I kept turning right at Starbucks only to spot two more around the…

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Green pond and lady in black coat

Don’t miss the beauty before you

Originally posted on 4utu:

Don't miss the beauty before you

Don’t miss the beauty before you wishing you had what is not

Moving too fast
Missing the past
Looking ahead
Too soon
It’s ahead

Don’t miss the beauty before you wishing you had what is not

It too will pass
Moving too fast
When you’re ahead
There is only the past
The beauty before you is now

Writing and photography by Estela Caballero

This work belongs to Estela Caballero

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