Case Study #8 - Kcat Writing an Article

"Kcat Writing an Article" 30" x 24" oil on canvas.

Kcat Yarza lives in the Philippines and is a contributing writer to the Manila Bulletin.

Pencil Sketch for the painting.

Kcat has NF2 which had left her deaf and one side of her body paralyzed. She cannot walk because of the NF. In fact, prior to the paralysis she was left handed and that was the side of the body that became paralyzed. Kcat practiced using her right hand and went back to creating artworks through her computer, and did self study through the internet until she developed her skills in graphic design again. She currently designs t-shirts and is able to use the money raised to help offset her own medical bills. She's had surgery to save her eye from a bulging tumor and had a cochlear implant to restore some hearing. In Kcat's words "Neurofibromatosis is a continuing battle. We may never know when and if the tumors will strike again. There are still a lot to "get better” from. Besides, why do I have to worry? Worrying would just add to our burden. What I need to do now is to be strong and find ways to raise funds for my medical expenses. God is with me. His will be done". Blessings came pouring. In 2010, Kcat was chosen as one of the 7 finalist in the Cebuana Lhuillier’s Search for Happiest Pinoy. In the same year, she became the grand winner of Pagbabago blog contest sponsored by Nuffnang and Goldilocks. She was invited to give a talk and inspire more people in different events and did a couple of TV, broadsheet and radio interviews. To share all these blessings from God, Kcat launched her “MAY Birthday Project” in 2007, where she asked her friends for hospital necessities and toys and birthday gifts to distribute among the Children’s & Neurosurgery Wards at Philippine General Hospital. NF2 is a genetic disorder which affects 1 in 25,000 births.

Thank You, Thank You, Thank You....10,502 times Thank You!

"Many Faces of NF" Team - Top Fundraising Team for Omaha - $10,502 for CTF

This past February 15, 2014 was the inaugural run in Omaha for the Cupid Undie's race with all donations going to the Children's Tumor Foundation. I want to publicly thank my teammates for making this happen: Lisa Rabbe, Mike Rabbe, Judy Blecha, Emilie Mindrup, Cat Koehler, Jaim Hackbart, Cortney Christensen, Mindy Rabbe-Miller, Steven Sherman, Sue Lyons, Teresa Armagon, Kourtney Greenfield,  and Tricia Heger. While running around in our skivvies in the middle of February is absurd (and terribly embarrassing for me!) the donations that came in really mean a lot to me and all the families affected by NF. All the money donated goes directly to the Children's Tumor Foundation (CTF). CTF is the leading charity in the fight to find a cure for Neurofibromatosis (NF). My son, Henry, was diagnosed with NF1 when he was only four months old. I had never heard of it.

Neurofibromatosis encompasses a set of distinct genetic disorders that cause tumors to grow along various types of nerves and, in addition, can affect the development of non-nervous tissues such as bones and skin. Neurofibromatosis causes tumors to grow anywhere on or in the body. NF1 is the most common neurological disorder caused by a single gene; occuring in one in every 3,000 children born. The Neurofibromatoses are genetically-determined disorders which affect more than 2 million people worldwide; this makes NF more prevalent than cystic fibrosis, Duchenne muscular dystrophy, and Huntington's Disease combined. NF is worldwide in distribution, affects both sexes equally and has no particular racial, geographic or ethnic distribution. Therefore, NF can appear in any family and it happened to appear in mine.

My Top Fundraiser award ($4550 in donations!) was a medal in the shape of underpants.
Trust me, if you have kids, winning a big medal of a pair of underpants makes you "Mom of the Year".

I want to share a little bit more about what my role in NF awareness is and how I got involved in this race, and therefore how my friends and family got involved in asking and running for donations.

In 2010, I decided to paint a portrait of Reggie Bibbs, mostly as a "thank you" to him for all he has done to raise awareness. With his face completely disfigured with tumors, he started the "Just Ask!" Foundation and wears a "Just Ask!" t-shirt because he knows people are wondering what happened to his face. After the initial portrait, I was surprised by the incoming requests via Facebook to paint more portraits of NF heroes. All people with NF who had help raised awareness and/or donated to NF charities. Soon parents began requesting portraits of their kids who had NF. I am happy to say as of today, I have painted 107 watercolor portraits and everyone depicted has fundraised to help find a cure. And, the people depicted are from all over the world: The United States, The United Kingdom, Australia, Ireland, the Netherlands, Colombia, Chile and the Philippines to name a few.

My amazing mother took the 2nd place
Fundraising Award with bringing in $2305 for CTF!
CTF Nebraska Chairman, Andy Schafer was stoked!
He and his wife, Amy, also have a son with NF
and work tirelessly to help raise awareness.

To view the online project, please click here: https://www.facebook.com/ManyFacesNF

In 2012, I took the project farther and wanted to start showing people with NF as something other than a statistic. Painting is a way that allows viewers to look at people with NF without the awkwardness of face to face interaction. It gives them permission to gaze. And with gazing, comes learning and education. Taking my cues from Vermeer and Hopper, I decided upon was placing them within familiar contextual frameworks so the viewers would just happen upon paintings of people doing their everyday activities only to realize that each person painted has NF and has a complicated life story. Each painting also has a placard with the person's story next to it. In some sense, the NF is just apart of the individual, but it is not the defining characteristic.

http://rmindrup.com/neurofibromatosis-art-work/portraits-of-neurofibromatosis-nf-

If I want my son (and other kids with NF) to grow up happy and secure, it was my thought to make sure he realized he was not alone with this disorder. And by redefining what "normal" is by having him participate in getting to know each person with NF that I paint, I believe I am on the right track. The more awareness I can create for NF, ultimately means the more people will be likely to donate. The more money that is donated to researchers increases the likelihood of finding a cure.

In October 2013, CTF and the Cupid Undie's Omaha Race directors, Suzanne Gibbs and Hannah Patrick approached me to form a team as this was the first time the run was here in Omaha. I cannot lie. I about died. I even told them that I wasn't really the "right" person for this and I wondered if I could just offer to volunteer to take bags, pass out water or do something as a way to get out of actually doing the race. Anyone who knows me, knows that I do not exercise...I hate the cold, running around in my undies sounded horrible and even more than that, I hate fundraising. To ask people to give up their hard-earned money to help my son and other families? I just wasn't sure.

I was actually relieved that my boys were wearing stocking caps
and had their coats zipped up even though
I am standing around in a sports bra.
How ridiculous is that?

Well, I decided to step out of my comfort zone (aka the safety of a studio) and just do it. And so did my mother, mother-in-law, sister and her husband, and several of my friends. I was stunned that 1. friends and family joined my team and 2. that we were really doing this. My husband was dubious for a long time as to whether or not I would really run around in my undies.

Well...we did it and my friends and family had a lot of fun. Henry was beaming that the entire city of Omaha would run around in their underpants for him and for other kids with NF. After the race was over, donations still kept coming in, much to my surprise. The city of Omaha raised over $35,000 for CTF and my team, Many Faces of NF, raised $10,502. Now that is really amazing and it is all thanks to all the amazing donors.

Case Study #6 - David Chalking the Driveway

David Chalking the Driveway. 30" x 24" oil on canvas.

I noticed the fact that David is sort of cramped when he does his chalk drawings. He does not spread out or look comfortable. When I asked him, he mentioned that his arms and legs start to hurt so he can only work for a little while at a time. With that in mind, I wanted the composition to also feel a little cramped to the viewer. This is typically a "composition no-no" but, then again, luckily for me, there really is no history of compositional discourse when deciding to paint people drawing with chalk on driveways. hahaha....

Rough layin after multiple
shoots and ideas. 30" x 24"

Stage One - 1st Layer of Color,

David has had to go through about 3 photoshoots with me already and I finally settled on the photo below with some adjustments. I hope his close friend isn't going to kill me when I asked for one more revision to the photos after receiving feedback this past June on my portrait project.

For the most part, most the artists who viewed my work preferred when the subjects "dressed up" for their portrait, noting that Joan Hollis and David Oosterloo both had interesting patterns to their clothing which made the portrait seem more formal. This subtle fact also makes the portrait a little more interesting visually to the viewer.

So, you can see how I gave feedback to David to redo his photo shoot, complete with getting rid of the blue t-shirt and replacing it with a long sleeved button up shirt with rolled sleeves. Mostly rolled sleeves because I don't really want him getting chalk all over his cuffs! Also, it is quite interesting to try and direct photoshoots via Facebook messages, but somehow we always seem to work together to get these done. In the end, I went back to the blue shirt because I think the subtle tie-in to the Children's Tumor Foundation is a nice touch.

David routinely participates in NF walks, rallies and such and is one of my biggest fans. Because of NF, David has a degenerative disk in the lumbar portion of his back which contributes to his spinal stenosis. He also has Chiari I Malformation with a syrinx to which he had to undergo surgery. The results of the first surgery didn't turn out very well, so he had to undergo the surgery again. Besides being a huge supporter of the Children's Tumor Foundation, he also finds time to spread awareness by his huge NF sidewalk chalk drawings. The drawings usually spell out "Cure NF" and can take up the entire length of his driveway.

Portrait Practice from Life

I have been painting portraits from life in either 2 or 3 sessions each week. So, while these aren't really completed portraits, they are all studies done from life. I am making this part of my weekly painting regiment so I can continue to improve my observational skills and have this complement the work I am doing using photographs.

Fran - 3 sessions

Kristin - 2 sessions

Doug - 3 Sessions

Bart - 2 sessions

Back on the Easel (and floor)

Most of my paintings need to be reworked a bit.

During the residency in June, I had both my past advisor Tony Apesos, and current advisor Laurel Sparks, point out some aspects on each of the paintings to consider. Additionally, I had my first meeting with my mentor, Stephen, last week and he went through on each of the paintings and discussed the areas he felt were problematic. Both he and Tony thought I needed to repaint David's hands on the Lego piece, so I will be taking photo of my husband's hands fumbling with Legos to see if I can get those to be working a little better.

There is also the reworking of Reggie's cup to make it more visually interesting, Jeff's face to make it more rounded, David's head and skull rework, Frank's t-shirt to glaze, Joan's arm to rethink values on and also some more subtle tone variations on her face along with David's face.

These small changes to each of the paintings may or may not be very apparent to most people, but I'm hoping that these little alterations will help make the work better. I am also remasking and redoing all the edges in white and painting over my signature.

The decision on whether or not to have a signature is a strange discussion, indeed. Artists were anonymous for years until the Renaissance. Giotto is one of the first artists to decide to sign his work and start the notion of the individual artist. Now, why we have decided recently to eliminate the signature is curious to me. I'm not sure I care all that much, I just find it curious. Are we all channeling our inner Roland Barthes and deciding that authorship is truly dead or is just an aesthetic choice? I don't really know, but I like these paintings better without my signature anyways, so maybe I just lucked out.

The Doctor Will Be With You Shortly

60 x 48 oil and collage on canvas.

The weight of waiting....

At some point you've been at the doctor's office waiting with your child for the physician. First we all wait in the waiting room amongst other parents and patients. We might make small talk with someone if they smile at us first. Other people in the room will do everything possible to not make eye contact. I think IPhones were created just for this purpose. IPhones and any Smart Phone lets people delude themselves into pretending they are busy. Plus even if they are not doing anything with their phones they can make the rest of us believe that they are and then they do not have to make any eye contact. I understand why people do not want to make eye contact or small talk. They don't want to be there. I don't either.

Updated April 22 -Thought I should take a pic of the
mighty sturdy frame and what it looks like stretched.

I do not have a fancy phone. I do have a sketch book. So, I just bury myself in that. I wear a baseball cap. Baseball caps are great because people cannot see what I am looking at. If they think I am drawing them, I typically make sure they see me looking at the tv screen and then they are convinced I am not sketching them. Once I'm convinced that they are again uninterested in what I am doing, I go back to sketching them.

After at least an hour of waiting in the bland and sterile waiting room, a nurse will come out with a clipboard and tell us to go to a room. Here's where the fun starts. That nurse will come in as well and ask some standard questions. Typically she has already filled the fields before I have even answered. Sometimes for fun, I like to pause and pretend like I am really thinking about the question and then I say "Funny, no one has ever asked if my son is allergic to latex...no...no, I'm quite certain he is not".

"The Doctor Will Be With You Shortly"
72" x 48" oil on canvas - lay in stage.

Typically, I just wait. And my son waits. And my other son waits too even though it is not his appointment. After another good half an hour or so the physician comes into the room and pulls out the rolling chair. Physicians enjoy sitting on rolling circular chairs. They like to wheel around the room. I like those chairs too and so do my kids. I, however, do not look nearly as cool rolling around on them as the doctor does, perhaps if I got a lab coat and clip board I could pull it off. While waiting, I let my children sit and spin on them. When I see the doorknob turning I tell my boys to knock it off so I can have the appearance of a good parent who has well behaved children who sit patiently with their hands folded.

The physician will do an exam and utter terms and numbers to his assistant. The assistants are then given instructions about what to do next for my son's exam. The physician leaves. The assistant leaves.

We wait.

The assistant comes back in and administers drops, an IV or whatever is necessary. They typically ask if we want to watch tv. We search for cartoons. My boys are tired of waiting. They fidget. They start staring at all the drawers and tools that they are not allowed to touch or play with.

We wait.

2/7/13 Spent the past 5 days going through medical files.
Transferred them to the canvas as the wallpaper and flooring.

Later the physician comes in. I can usually tell when they've looked at the report prior and when they have not. I try not to call them out when they haven't, so I will say "I'm fine waiting if you'd like some time to read the radiologist report that I had sent over to you earlier in the week". I'm not saying it to be a jerk, I am saying it because I would prefer they really read it rather than try to rush through the exam to get to the other fidgety family waiting in the room next to me.

More tests.

The physician and assistant leave.

We wait.

The physician comes in and tells us some good news. He or she will always tell you good news no matter what. They must learn that in a class in medical school. Always find something positive to say first. Then he or she minimizes what might be bad news. They will use terms like "let's keep monitoring"...and "possibly another surgery".

They say this to at least plant the seed so then at the next appointment it won't seem like dropping a bomb onto the patient. It is how I would do it too. I don't fault them at all. My son has wonderful doctors who are looking after him. I trust that he is in good hands. Of course, I trust that because it is also what I want to believe. No one wants to think "Did this gal get last place in medical school because she seems like a real doo dah".

And what, again, do we do?

What we do best. We wait. We watch. We monitor and we schedule another exam. Then the cycle starts again.

And we just simply

Wait.

Case Study #5 - Jeff Painting a Canvas

"Jeff Painting a Canvas" 30 x 24 oil on canvas

There are so many people affected with NF, but I have a special place in my heart for a couple of moms that live near by. Not that they are working harder or better moms or anything like that, but for some reason, it was nice to know that there were other moms dealing with raising a child with NF living reasonably close to me.

One such family are the Hansons of Overland Park, KS. Jeff Hanson was born with NF. Jeff's NF was due to a spontaneous gene mutation, so Julie and her husband, Hal, decided to just invest all of their energies and love into Jeff and just accept the diagnosis and embrace whatever Jeff's interests led to.

I am now going to briefly share Jeff's story (which a more comprehensive bio can be found on his website)

Lay in stage - 30 x 24 oil on canvas

Because of the NF, Jeff is visually impaired from an optic nerve tumor (he nick-named "Clod". The tumor started causing severe vision loss in 2005, and Jeff received radiation and chemotherapy in 2005-2006. Despite his low vision, Jeff sees well enough to continue creating original artwork for several charities, as well as commissioned pieces.

Jeff never had a "pity party" about his medical condition. He kept a great attitude throughout his treatment, despite losing his hair and all the usual "chemo" side effects. Jeff said good-bye to his home school friends, and spent three years at the Kansas State School for the Blind. He took all of this in stride, and used humor, creativity, and a headlong immersion into his artwork to defeat "Clod." On his last day of radiation, Jeff showed up for treatment in a TUXEDO! "Clod" was not going to win--or be taken seriously. Following that treatment, a helium balloon launch in our front yard signaled "farewell to Clod" and a new page of life.

Jeff started painting watercolor note cards in the Spring of 2006, when he was 12 years old. It was a hobby and pastime for him, since his visual impairment prevented him from doing sports and the usual kid stuff. Jeff's art was totally abstract, with bright bold colors. His vision did not permit him to create any concrete images. But his color combinations were explosive! Jeff sold the note cards at "Jeff's Bistro," a glorified lemonade stand he set up in his driveway in the Summer of 2006. Jeff painted and sold over 5000 note cards that summer, along with mom's baked goods, raising over $15,000 for The Children's Tumor Foundation, to help fund research for Neurofibromatosis and optic tumors.

Since that time, Jeff has moved into larger works using acrylics on canvas, with proceeds benefitting charities that have "touched his life." Jeff also donates paintings to several of his favorite charity auctions--raising as much as $15,000 each! Throughout his career, Jeff has painted over 800 original works. He is close to raising almost one million dollars and he is only nineteen years old. Now, that is inspiring.

Jeff Hanson - Watercolor, 24 x 18. 2012.

I have already painted Jeff, like I have the others for my Many Faces of NF project. So, in keeping with my idea of painting the person and having NF play a secondary role, I asked Julie to take pictures of Jeff while he worked. I went to visit the Hansons and was visually stunned by the studio. Julie has everything all organized and categorized. Ohhh...how I wish someone would come organize my studio, mine looks more like a tornado came through. But, I digress.

Jeff's mom Julie is amazing. She completely focuses herself on the career of her son's art and is tireless in promoting him, getting supplies, going to charity events, promotion and marketing. I think Jeff is very lucky to have such a mom. Although, since I am also a mom, Julie is very lucky to have such a tender and loving son as well.

I like to talk with her because Jeff is exactly ten years older than my son. So, she and her husband have already walked this path and they are a source of comfort, hope and inspiration. I admire the entire family and my only reservation is that I hope my painting will do Jeff justice.