Case Study #10 - Darren Skydiving in England

"Darren Skydiving in England" - 30" x 24" oil on canvas

One incredible aspect of my project (and of social media in general) is the ability to connect with others globally. I painted Darren Kirk's portrait a few years ago for my Many Faces of NF page. Darren lives in Selston, U.K. I realized he was skydiving to raise money for the Neuro Foundation in the United Kingdom. It had occured to me that at that time that I wasn't really very well informed about NF charities in other parts of the world besides the United States. This prompted me to learn more about the Neuro Foundation and how they help NF families and patients.

A skydive is generally something that people who don't mind taking risks embark on. It takes courage and faith to leap out of a plane and just hope that the people who strapped you into your parachute knew what they were doing. I have no plans of ever doing this. My fear of heights couples with my desire to keep my feet safely on the ground, have always made me admire people who not only take the risk, but apparently find it fun and exhilarating.

Darren Skydiving in England - prep sketch for the oil painting

After some Facebook discussion about the event, Darren informed me that he and his friends managed to raise about £6,000. He also mentioned that not only does he have NF, but both of his sons have it as well, so the jump wasn't just about him, but also a showing of love for his family too. He also organizes NF get togethers, picnics, and bowling nights.

I decided that it would be a great addition to the series to depict Darren doing something more than just a hobby. I also believe that keeping in line with all the paintings of quiet solitude, the painting should depict the quiet moment of right before he jumped out. I would think that is when focus, fear and concentration is at its highest. The moment you know you are going to jump out of a plane. And while I can speak from experience, it must be quite an unforgettable feeling.

In Darren's words:

Watercolor of Darren done for the
Many Faces of NF page

I found out I had nf when I was 27 (now 45) so found school very difficult just couldn't grasp many things. At age 11 I had a deformed chest bone removed only later to find out it was NF-related. It resulted in having a scar from nipple to nipple. I am very lucky that my NF is mild; although I have tumor in my head and while not on the brain itself it has woven itself amongst the fat content that surrounds the brain. My bones ache all the time and I have diminshed concentration and a very poor memory. My main concern now is for my two boys Kieran and Dane who both have NF. They are doing well but Kieran struggles at school. Dane has social problems and his issues can be hard work at times. I've done two sky dives now and raised about £6000. The last jump I got 20 people to participate with me, so I've set up another upcoming jump to help raise more awareness.

"Many Faces of NF" At University of Nebraska-Lincoln - May 2014

Fourth Grade Students viewing my show at UNL

May is National NF Awareness month and once again, like last year, the University of Nebraska-Lincoln welcomed my work and exhibition into their Rotunda Gallery.

This year instead of five oil portraits I was able to exhibit ten portraits and include the accompanying biographies of each person depicted. I consider myself lucky that UNL offers this gallery space to me and plans to do so every May to help raise NF awareness.

A few days after I installed the show, I just got a nice "thank you for painting neurofibromatosis portraits" message from a UNL

I look a bit tired in this photo.
I prefer painting over installing them! ha!

BFA student who informed me that her boyfriend has NF2 and had surgery when he was 5 to remove the tumor on his brain. He wasn't expected to live through it, but he did. NF is a constant presence in his life--just like it is for anyone who has been painted. It is always nice to get emails from people who have enjoyed my work. Not only does it let me know that people are, indeed, going into the gallery and looking at them, but it also takes quite a bit of initiative to enjoy a show and take the time to let the artist know about it. I appreciate that.

It was a happy coincidence that my son's fourth grade field trip to UNL coincided with the exhibition. In the morning, we visited Memorial Stadium (they let all the kids do the tunnel walk and run out onto the field) and then Morill Hall to view Archie the mammoth dinosaur.

Jeff's mom is always a help
when installing the show!

Afterwards, my son's class got to eat lunch at the student union and view the paintings. Henry was on cloud nine. I didn't realize how many kids already have Ipads and digital cameras, so they took pictures of Henry by his painting. And then pictures of themselves with Henry and in some cases (and I found this funny) just simply pictures of Henry. Henry's teacher found that to be fairly amusing too. After viewing the works, we all walked to the Capitol for a tour of the building.

Interestingly, I had many kids let me know that while the other people in the paintings "looked" like there was something wrong with them, Henry was "normal". I pointed out the painting of "Jeff Painting a Canvas" and said "his tumors are on the inside, like Henry's". And, really, I think that is what is difficult about NF. It manifests itself so differently from person to person that there is no one diagnosis or set of symptoms, there is no characteristic trait that everyone with NF has. It is variable. It is unpredictable. It is also why there is no "face" of NF. It is why the paintings need to be viewed collectively, so people can begin to comprehend that NF can manifest itself into different ways.

While the kids were in the gallery, I did have one little boy who read the placard about Reggie and he came up to me and simply said "What they did to that man. That man drinking coffee. That is just mean." I was startled and touched at the same time. Startled that the fourth graders were actually reading placards and then touched that perhaps that painting and the story will stick with this young boy. I can only hope so.

Bodies of Work: A Collaboration Exhibition & Reading

Bodies of Work: A Collaboration Exhibition & Reading
One-night only: April 21, 2014
Apollon Omaha, 1801 Vinton St., Omaha, NE

If you missed the original airing of my interview, you can listen to the mp3 of Bodies of Work on KIOS-FM, Omaha Public Radio and Michael Lyon.

 

Before reading the details of the art exhibition and event, I would be remiss to not mention photographer, Greg Higgins, who attended the event, took photos and captured the entire night with his camera. Every image on this blog posting was taken by him. He always attends our Drink N Draw sessions and captures images of the models for us to use later to finish our paintings. I am appreciative of Greg's continued support of Omaha artists, both writers and visual artists and his involvement and selflessness in allowing us to use his photography to help share our art. So, thank you, Greg.

About the Show:

Collaborative Series: Poet Fran Higgins, body-artist Sally Deskins and figurative artist Rachel Mindrup come together to create a series of mixed-media work that explores body image, art history, womanhood and motherhood, furthering their “Mother-Artist” project originally debuted Feb. 2013. The trio of artists started with Deskins’ acrylic body-painting; “Inspired by Yves’ Klein’s Anthropometries, I take a feminist approach, as artist, model and director, examining how our outside selves both hides and radiates our mind,” describes Deskins of her approach. Thereafter, Mindrup was given the twenty large works to draw on at her discretion; “Usually I spend so much time painting figures, paying attention to every resolute detail; with this series, I wanted to draw quickly to echo Sally’s swift body-printing method, and I kept seeing these mythological characters, coming in and out of the body parts like the bodies represented a whole world,” describes Mindrup. Mindrup then passed the work onto Higgins who, penned ekphrastic poetry on each, based on her own perspective, displaying irony, hilarity, and sometimes raw truth on the female, motherhood, and human experience.

Intimates & Fools: Coupling body art and poetry, ‘Intimates and Fools‘ intimates the complicating pairing of the female form and cultural notions of beauty while playfully seeking to bare and bear such burdens of their weight. Laura Madeline Wiseman’s poetry explores notions of the bra and its place near the hearts of women, while contemplating literary and pop cultural allusions and illusions of such intimate apparel. Sally Deskins’ body art and illustrations make vivid and bright the female form while calling into question the cultural narratives on such various shapes we hold dear, be they natural, consumer, or whimsy. The book is published by Les Femmes Folles Books, 2014 and is available on amazon.com. 

Rachel Mindrup is a professional artist and art educator. Her current painting practice is about the study of the figure and portraiture in contemporary art and its relation to medicine. Mindrup’s client list includes: Kiewit Corporation, Boys Town, Creighton University, Boys Town National Research Hospital, and the Kansas City University of Medicine and Biosciences. Her artwork is held in many private collections including those of Primatologist Jane Goodall and Supreme Court Justice Clarence Thomas.

Fran Higgins earned her BFA, graduate certificate in Advanced Writing,and a Masters in English from the University of Nebraska Omaha. Her work has appeared in Plains Song Review, Celebrate, SlipTongue, NEBRASKAland magazine, and The Untidy Season: An Anthology of Nebraska Women Poets. 

Sally Deskins is an artist and writer, focusing on women and feminist writers and artists, including herself. Her art has been exhibited in galleries in Omaha, New York, Philadelphia and Chicago; and has been published in publications such as Certain Circuits, Weave Magazine, and Painters & Poets. She has curated various solo and group exhibitions, readings and performances centered on women’s perspective and the body. She edits the online journal Les Femmes Folles, has published three anthologies of art and writing and her first illustrated book Intimates & Fools, with poetry by Laura Madeline Wiseman, was published in Jan. 2014.

Laura Madeline Wiseman is the author of Some Fatal Effects of Curiosity and Disobedience (Lavender Ink, 2014), Queen of the Platform (Anaphora Literary Press, 2013), Sprung (San Francisco Bay Press, 2012), and the collaborative book Intimates and Fools (Les Femmes Folles Books, 2014) with artist Sally Deskins, as well as two letterpress books, and eight chapbooks, including Spindrift (Dancing Girl Press, 2014). She is also the editor of Women Write Resistance: Poets Resist Gender Violence (Hyacinth Girl Press, 2013).

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Les Femmes Folles is a completely volunteer run organization founded by Sally Deskins in 2011 with the mission to support and promote women in all forms, styles and levels of art with the online journal, books and public events; originally inspired by artist Wanda Ewing and her curated exhibit by the name Les Femmes Folles (Wild Women). Les Femmes Folles Books is a micro feminist press that publishes 1-2 titles a year by invitation. Other books include Les Femmes Folles: The Women, 2011, 2012 and 2013, also available at this event and at blurb.com. femmesfollesnebraska.tumblr.com
The Apollon is Omaha’s multi-genre arts and entertainment hub where all are welcome to indulge their tastes in a place of welcome and warmth. The Apollon experience is co-created by a vibrant, well-supported arts community and an equally vibrant, well-rewarded audience. apollonomaha.com

SPECIAL EVENT: DRINK N DRAW, 8-10pm, 19+
Drink n Draw Omaha is a socially creative event inviting artists (painting, sculpting or drawing) to come and practice their craft inspired by two professional art models. Cost is just $5 for artists 19+. Bring your own supplies and take advantage of APOLLON’s beverage service. No photography permitted. More information at facebook.com/drinkndrawomaha

Case Study #9 - Meg Embracing Miles

"Meg Embracing Miles" 30" x 24" oil on canvas

I met Meg on Facebook back in 2010. I painted her portrait (pictured below) as one of the very first in my Many Faces of NF series. Later she asked me if I could help her out by painting the portraits of three children living in an orphanage in Nicaragua. I agreed to help out. Truthfully, I can't imagine what life in an orphanage is like, but I'm guessing they could use all the help and donations as they possibly can get. So, it was no trouble at all for me to be able to help her out with her request as she provided many photos of the children and let me decide which ones to paint. The portraits were then auctioned off and the money raised went to support the kids. 

Meg sent me her story to accompany the first portrait, in her words:

30" x 24" oil on canvas - underpainting

"I was diagnosed with NF as an infant. My case was caused by a spontaneous mutation, neither of my parents have NF and nor do my younger brothers. For the most part I had a pretty normal childhood, other than having a large tumor on my lower back that was extremely painful when bumped, and also one on my foot. When I was 8, I had major surgery to remove both tumors. My parents had shielded me from the seriousness of the surgery and the fact there was a chance I would not walk again after the surgery, but I did know that without the surgery I would eventually be paralyzed. The following summer, though, was when things really changed for me. Our local newspaper ran an article about Neurofibromatosis and used my family as the subject. The unfortunate title of this article was "Living with Elephant Man's Disease." For the next several years I was teased and called names like "Elephant Girl." It was really the first time I had felt "different" because of my NF. The worst part of growing up with NF before the Internet Age was not really knowing anyone else who had NF, other than the people I would see once a year when my parents would host a cookout and raffle for NF. 

2011 Watercolor and Wax

In spite of challenges like that growing up, as well as several more surgeries, I lead a pretty normal and fulfilling life. I graduated High School with an Advanced Diploma, went to Virginia Tech and graduated with a BA in Communication Studies and minors in Theatre Arts and Liberal Arts, have a job and am active in my church where I volunteer with our Preschool Sunday School, sing on the Music Team and am involved in our Women's Ministry and Missions Ministry. I have been to Nicaragua 14 times since 2003 to volunteer in an orphanage, and have more trips planned. I have also met so many amazing friends through Facebook who have NF, or whose children have NF and am so grateful for the support and friendship that has grown, even though many of them I have never met in person. I pray every day that we will have a cure for NF some day. The sooner the better!"

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.