“now, what the hell is a chromosome again?”

“The more you know, the more you know you don’t know.”
– Aristotle


The post title is a line I pull from page 8 of My Heart Can’t Even Believe It, A Story of Science Love and Down Syndrome,  Amy Silverman’s recently published book.  I appreciate the inquisitive and amusing attitude throughout the book. It’s honest.

IMG_9219When I talk with her about my interest in drawing Sophie, her daughter, I explain I want the work to serve as education. First I have to educate myself and in the process (mustering up all the elements of design I can) maybe I educate you. I should say the only confidence I feel on this day, is in my drawing skills. About the study of living organisms – I’m no expert and it appears to get more complicated as I go. (Star Trek’s Dr. McCoy comes to mind…I’m an artist, not a scientist!)

Some conclusions I’ve drawn:  I know more about balance when I look at an imbalance, I recognize the typical when I try to understand the atypical, and I look for order when I observe disorder. And I really dislike labels.

Genetic order – Genetic disorder

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Sophie’s Karyotype

Here is a copy of Sophie’s Karyotype ↑. Doesn’t it resembles a beautiful ancient alphabet? Trisomy 21 is a genetic disorder, describing three chromosome twenty-one’s instead of the usual two. Note Sophie’s ↑ are numbered and twenty-one is high-lighted.

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My drawing of Sophie’s karyotype (not numbered / not highlighted)

A Karyotype is a picture of genetic arrangement. It represents an individual’s complete set of chromosomes. Twenty-three inherited from each parent pair to set up a typical forty-six (total). Chromosomes are found in the nucleus of every cell in the body (except in the egg and sperm). Again, in Sophie’s case there are forty-seven chromosomes (3 twenty-one’s).

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Here is my version of a Sophie ↑ cell. All the regular parts are visible: the cell membrane dances the edge of the cell itself, mitochondria (red and package-like), golgi (bubbly and bright blue), endoplasmic reticulum (labyrinth-like green with red dots) and the larger round form to the right, enveloped in its own membrane, is the nucleus (the control center).  This entire structure is what we understand as the basic unit of life. I’ve detailed several large-scale cells and believe me – based on what I understand now – I will approach the next cell I map differently.

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Sophie’s chromosomes in the nucleus of a cell. I carefully place in the first ten.

I fill the nucleus with Sophie’s 47 Chromosomes. Remember, the nucleus is the control center.  It governs the work performed by the cell including growth, repair and reproduction.

Sophie has
forty-seven (one too many)…
chromosomes…
in every nucleus…
in every cell…
in her body.
Like a meditation I let it sink in.

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Nucleus complete with all 47 chromosomes set in.

Chromosomes, long strands of deoxyribonucleic acid, hold unique genetic information (think blueprint). DNA, the complex molecule shaped like a spiraling ladder, holds many (many) genes. There are thousands of genes within each nucleus. Genes act as code that direct and maintain the entire body. Every cell in our body holds the same code but uses it differently depending on the cell.

I wonder about all of this as I detail 3 chromosomes and direct the DNA (in the composition).

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I love drawing DNA. You’ll find the double helix spirals moving across all my anatomy study of the last few years. Somewhere I read that genes express (produce). I understand the word express in the context of art. Naturally I wonder about Trisomy 21, do the extra set of genes leads to over expression – over production? I don’t know.

So…what the hell is a chromosome?
Chromosomes are long strands of DNA. DNA, known as the code of life, houses for each one of us our unique genetic make-up.

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Sigh…this was hard to break down and understand enough so I can write about it.
#NotKidding.


A highlight : The Willamette Week, an alt-weekly in Portland Oregon, ran my profile drawing of Sophie on their cover.

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a profile

Profile –
: the shape of a head or face that is seen or drawn from the side
: the shape of something that is seen against a background
: a brief written description that provides information about someone or something


My mind wonders: Is this portrait a profile of Sophie or is this a profile of Trisomy 21? Both, all of it, I remind myself. I map Sophie, a real person.  I map Trisomy 21, a genetic disorder. I talk a lot about the science behind my work. Today I hope to give some attention to Sophie and to some drawing elements as well.

A profile of Sophie
I study photos of Sophie all summer. I ask lots of questions and read more information than I can recall. I have a niece named Sofia, I know the name means wisdom. I meet Sophie days after her 13th birthday. Summer break is ending and this week she begins middle school. Every time I come to the work on paper, I recall one of the last things she indicates at our initial visit. She’s a teenage girl and she wants to be just like every other teenager. She wishes she didn’t have Down syndrome. I can’t help but think about this every time I come to my drawing table.

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Portrait of Sophie, Side view

About drawing
When I begin, I can’t know how much I will enjoy working out this composition.  I practice everything I teach my students. I look closely and consider how to express best everything about Sophie: the defining contour and variety of texture within her complex structure. BTW, all structure in its uniqueness is complex. I don’t add anatomy to these portraits for a good while because I like how the simpler sketch expresses some personality. I photograph the process to hold these aspects of Sophie.

I work on paper. These details are in pencil – graphite and color, regular and water-soluble. I like this part so much that for a moment I consider teaching only pencil drawing. I laugh at the thought because anyone who’s studied with me knows they never see any kind of pencil in my class, much less draw with one.

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Profile of Trisomy 21
Down syndrome is a genetic condition that causes intellectual disability. I plan to include a brain from the start. An interesting find is the connection between DS and Alzheimer’s. I didn’t know early onset of 
dementia may be a factor in DS. I ask an MD friend to tell me the difference between Alzheimer’s and dementia. None, he responds. They basically mean the same thing. 

I am most familiar with the facial characteristics of DS. I observe some of the common traits of a smaller and flatter nose (bridge) and forehead. I am not convinced there is much of an upward slant to Sophie’s eyes, at least not in the photos I shoot. I don’t see epicanthal folds nor do I note smaller ears. I have to wonder if some people outgrow some qualities. Individuals are unique, I hold steady to this thought.

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Portrait of Sophie

Sophie shows me her fissured tongue (and I love drawing it). I don’t find this as a common characteristic but I learn big sister Annabelle researches the condition and in this case, it is DS related. Looking at drawings of a skull, I learn the mouth and jaw bone are smaller and palette narrower which cause the tongue to appear large. As I lightly lay in anatomy, I consider the smaller than average nasal passage ways which can make breathing difficult.

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Because Sophie mentions 2 heart surgeries, I initially consider 2 hearts in the composition. I reconsider when I find an EKG related to Endocardial-Cushion Defect. I already have the heart in the drawing, this element refers to that and is not only an expressive life-line but informative of DS as well.

All of my work is education based, this drawing is no different. I have a new respect for Science and all that it provides for us. But I do not let go of my respect of the Subtle Body and its energy, you know…the part about spirit and its fulfillment. I clean up at the end of each drawing session and leave my studio for the day and I can’t help but wonder if Sophie will live the life of a typical teenager. Each individual is unique. Hold steady that thought.

A side note
Title of artwork. A Profile of. A Portrait of. One more thing to show itself in time.

freedom in what is

I have a rocking chair in the studio. I sit and look at the days work. Last night I feel good about my current study. I enhance, highlight and pull the form together. Now the rest of the story can get organized into a grounded picture plane.

I draw 13-year-old Sophie, who has Down Syndrome or Trisomy 21. I research carefully to be accurate on details. It’s challenging because I think I understand but I don’t know that I really do. I also know at some point the science has to get set aside so I can paint with freedom.

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I find it interesting that Sophie hangs on the wall with studies of my mother and father. They both retired from the El Paso Public School District – my father was a Special Education counselor for the west area of the city and my mother was a Speech and Hearing therapist.

Mom spent over 32 years working in education. She worked in Special Ed with both the moderate to severe disabled as well as with regular education that included speech problems, hard of hearing, and articulation deficiencies.

I call her while I work and ask if she is a very patient person. I use the word very but what I really mean is more than I can know, cause frankly Mom’s not known for her patience. And she doesn’t pretend to be … patient.

How did you do it, working in special education for all those years (I also want to ask how she raised 6 children)? She pauses for a good long time and then tells me she’s a realist. I just deal with what is Monica. I don’t make more of it or less of it. People are who they are. I could do it and I did it well. Not everyone can.

Mom takes care of dad these days. And I admire what appears to be her patience.  I admire her practical nature and her ability to deal with what is.


On another note…
As I sit in the rocker I decide I love the freedom this open armed posture holds. It’s not my idea for Sophie to take this stand, it’s hers. I remember when we were starting out her mom saying something like … yes, that’s Sophie.

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I recall a small, playful print from a few years back and I have to say, it feels more than natural to be pulling this composition together now.

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the feet and hands, and some trisomy 21 markers

Steeped in the study of Trisomy 21, I lay in general structure for my drawing of Sophie. I learn the spacing between the first and second toe is one of the characteristics of Down syndrome as well as are flat feet (pes planovalgus). Other markers may include smaller hands and fingers. And sometimes a deep, single crease across the palm of the hand.

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Feet
I have to admit when I see Sophie’s feet, I can not wait to draw them.  As a Yogi, the feet are one of the parts of the body I am particularly aware of in every standing pose. You press the mounds of the feet, leveled and firm, into the earth – you root to rise. But what if pressing firmly into the ground (rooting) isn’t so simple. Low muscle tone (hypotonia) and loose ligaments  are contributing factors to a list of orthopedic problems associated with Down syndrome.

I’ve been in classes where Yogi’s spread their toes, an ability only hormonal change has made easier for me. Yes my toes have become more flexible as I age. In general, much of me is more flexible, but I know hyper-mobility is not a good thing. It may be caused (as in the case of DS) by low muscle tone and ligamentous laxity, and can be painful and lead to joint instability if not dealt with properly. A counterbalance to the musculoskeletal related condition is strength training (body awareness and directed effort).

Physical therapy is a regular part of Sophie’s life, her mom explains the afternoon we meet. No Yoga, she adds. Along with her big sister, Sophie also studies ballet. I’m surprised and have to smile when very spontaneously,  she grande jete’s across the studio and into another area of my house and then back again.

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Hands
I sketch the hands. The arms, in general, are not easy. I erase at least 3 (way more) rounds.  This one element in the image is deceiving as Sophie angles her hands back, giving me one more expression to figure out.

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Though her hands are on the smaller end, I don’t easily note other markers of DS. In Sophie’s case there is no single palmer crease. And if the 5th finger (pinky) curves inward, as it might in some cases, its subtle. Sophie’s thumbs are wider and flatter than average though the cause does not directly relate to DS.

I approach this study with the eyes of someone who is learning. I look more slowly and carefully than usual. I work to resolve nuance. In my Yoga practice yesterday, the teacher says attention is medicine. It is.

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Other stuff I learn…
The great toe, the first digit of the foot is called the hallux. The thumb of the hand is called the pollex.

About the red highlight on the toe(nails)…
In general I bring red into the area of the feet associating them to grounding energy. In particular, the red toenails tell the viewer Sophie regularly enjoys a fine pedicure (p. 23 of My Heart Can’t Even Believe it).

a heart in situ

Amy Silverman contacts me in February. She wants to have coffee and talk about our work and how it intersects. Our work intersects? Amy is managing editor of the Phoenix New Times.

We never meet for coffee though we keep in contact and on May 1st she comes to my studio.  Do you mind if I record our conversation? I’m impressed. Why don’t I think to do that when I want to remember things? Clearly we are trained different. We do a little catch up and then she tells me she’s written a book. She says it has science in it. We talk about my drawings and about how I write about my work. She refers to what I do as reporting. One thing leads to another and I make a plan to attend the upcoming book launch.

My Heart Can’t Even Believe It, A story about science, love, and Down syndrome is a story about her daughter Sophie. It’s actually about all of her family but in particular it’s about her youngest child born with Down syndrome.

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Amy tells the story of how her and her husband handle the birth of Sophie, and the life stuff that follows. She goes through medical details as they present themselves and as she tries to understand Down syndrome, also known as Trisomy 21.

She’s descriptive in a way that catches my attention. She takes what is complex science and makes it easier to understand (not easy, just easier). Her words have a visual impact on me. Every time she describes to the reader a physical symptom and/or procedure, my mind’s eye sees it (wants to see it).

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Amy and I first meet in the studio on May 1 and within a month (June 1st) I layout Sophie. I am working on a painting of my nephews daughter, my niece Pilar, who is 5. Because I have much to learn, I decide they’re good back and forth studies. I don’t have children and all of this is a type of learning for me. What is normal human growth and development? Do I use the word normal?  Will I use the words typical and atypical? Do I even use any of these words when I talk about a drawing?

While Amy writes about the more common features of Down syndrome and notes her daughter looks like other Down syndrome children more than like her own family, I see it different. Sophie is totally unique to my eyes. I look. And I have to look again.  I bookmark many things. As I work I go back to the book, to research material and to my notes. As with all my work – you learn as I learn.

Amy connects me with the Co-Director of the Pediatric Down Syndrome Clinic at Phoenix Children’s Hospital who generously makes herself available to me. I contact a research scientist who knows cell biology well. And I talk to a cardiologist who gifts me a couple of his medical illustration books by Dr. Frank Netter. One is about the thorax in general, while the other is about the heart in particular and includes the Atrioventricular Septal Defect that Amy describes in the early part of her book as a hole in her (daughter’s) heart. The book refers to it as Endocardial-Cushion Defect.

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The chapter’s name (the words above to the right) is where I get the title to this post. I have drawn the contour of Sophie’s complete body (studio shot in post). And as I go from part to part I can’t help but wonder how the 21st chromosome affects each and every one of her organs. Down syndrome associates to DNA (our blueprint) and an extra 21st chromosome, it is also called Trisomy 21. Right now – A portrait of Sophie, studying Trisomy 21 – is the working title.

I know the composition will include 2 hearts because the day I meet Sophie she tells me about her heart surgery – both of them. And she tells me about her feeding tube.

Thanks Amy, for bringing your work to my attention. And thanks Sophie for agreeing to let me map you. And thanks for the blue paintbrush you gifted me (If my memory is correct Sophie’s collection includes at least 300 paintbrushes). I refer to the color of the brush as turquoise (my favorite color) and Sophie corrects me, It’s more like aqua! She takes her mom’s cell phone and pulls up a color swatch. It’s true, the brush is aqua.

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Hey Sophie, do you know energetically, that particular blue is the color of expression and is found in the throat? It is.

For more about Amy and her book → My Heart Can’t Even Believe It.

FIVE15 TO THE POWER OF 5

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Hey Phoenix! It’s that time of the year again. The summer months bring 515’s annual guest artist invitational.  Each of the nine members invite 5 artists. In this case you’ll have over 45 artworks to see.

Yes, this is the 5th annual FIVE15 TO THE POWER OF 5. That’s a lot of five’s!

Member Mary Shindell has invited 5 of us. Her guest list includes:

Mark Fry
Christine Cassano
Carolyn Lavender
Nick Shindell
Monica Aissa Martinez

Here are detail shots of each artist’s work –

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Mary Shindell 
Red Hummingbird 
Laser cut acrylic and paper collage (triptych detail)

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Mark Fry
Looking for Calm Skies 
Encaustic on wood panel

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Christine Cassano
Nanoscales  
Mixed media (detail)

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Carolyn Lavender
Otter-Otter
Graphite on paper (detail)

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Nick Shindell
Patti 
Acrylic and oil on canvas panel (detail)

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Monica Aissa Martinez
 The Little Brain 

Mixed media on mylar (detail)

WHO: Five 15
WHAT: FIFTH ANNUAL FIVE15 TO THE FIFTH (FIVE15 TO THE POWER OF 5) GUEST ARTIST INVITATIONAL
WHEN: July and August
First Friday, July 1st and August 5th (6-10PM)
Reception on Third Friday, July 15th and August 19th (6-10PM)
WHERE: 515 E Roosevelt St, Phoenix, AZ
Every artwork will be available for purchase. Buy it, take it!

See you there!

the teeth

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On my last visit to the dentist, Melissa (my Dental Hygienist) and I begin a conversation, always awkward for me. What are you doing these days, she asks. A full anatomy study of my 5-year-old niece, I gurgle out. I am always impressed she can decipher what I say and in her usual way she begins to share information about teeth. We have primary teeth and permanent teeth.

Melissa: At the age of 5 and 6 children start to grow their permanent teeth.
Me: (…gurgle) Erupt, I understand (gurgle…gurgle) teeth erupt.
Melissa: Yes, they do!

A harsh word I decide while Melissa names off the various teeth and informs me about how many and where they sit. I am always interested in what draws people to their work. Melissa loves teeth! She has her daughter’s pano and would I like to see it. I don’t know what this means but when the image comes up I understand pano is short for panoramic [view of the teeth].

I receive a quick explanation of what I am looking at and a fascinating lesson on the particulars. I can’t believe the quantity and layers of teeth in a child’s mouth! I’ve seen images of this before but never really understood what I was looking at, until now. The photo is marvelously beautiful and uh…creepy.

While going through school Melissa had to carve out each tooth. Based on what I know about observation and drawing,  I can understand carving out each tooth offers unique knowing and connection to its intricacy.  Where are your carvings? Do you have them? She doesn’t recall what she did with them. If I carved out each tooth at some point in my life, I would know where each one was! – each and every single one of them!!

Melissa gives me a clean bill of health, a blue toothbrush, toothpaste, floss and generously offers me a copy of her daughter’s pano. I smile easily.

Back at the studio … I lay the pano into the composition. I can honestly say I’ve struggled ever since to make it beautiful. Teeth are practical and unique in their structure, they serve us well. They start the digestive process and perhaps I should stay with that. But they also have symbolic associations connected to self-image. We see them as a signs of health, attractiveness and beauty. And they connect to the energies of  expression and communication.

Here is where the image sits today. I still work on it.
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Melissa has supplied me with information and images before, which I have put to good use.

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Below are earlier studies of single teeth. The pano is by far the most challenging and the most fascinating. Thanks again Melissa! Gotta love those teeth!

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Interior and Exterior View of a tooth. Flashcard series.