Case Study #11 - John Chatting on Ham Radio

"John Chatting on Ham Radio" 30" x 24" oil on canvas

John Walsh has been very active in the NF community. His son, Patrick lost his battle with NF related cancer on 6-21-2010 when he was 33 yrs old. John has NF and does his daughter Jennifer Walsh. Patrick use to say "Keep up the Fight." and that is what John and his family have been doing ever since. The Walshes have been very active at NF events in the New England area. Their daughter Jennifer has been doing a fundraising bike ride for a few years now raising well over $13,000.00 for NF.

John's Story in his words:

My parents and I first learned that I had NF in 1957. It was not called NF at that time it was called Von Recklinghausen’s disease. It was that year that I had my first tumor removed. It was on my collar bone. I have one brother four years older than I and he does not have NF. My Mom and Dad also do not have NF.

Prep sketch and underpainting for
John Chatting on Ham Radio - 30" x 24"

Over the years I would several have more remove from other parts of my body. The doctors told us only to have them removed if they bothered me. I can remember some kids in school remarking about these big lumps on my arms, some wanted to know if they could catch it. Being a kid myself I use to tell them that they were African Mosquito bites. I knew what I had and at times had to inform the school doctor when he came around the schools for our yearly check ups.

Other than the few operations that I had to remove tumors, I made it through school OK. It was 1969, I was graduating from high school and the draft was on. I was a low number and felt that I should go sign up and serve my country. I had a background in electronics and had my Ham Radio License. I took a test at the military base and they told me they would send me to radio school. I was glad to hear that news. They then sent me for my departing physical. As soon as the doctors seen me they said I could not be in the military because of my condition. I was kind of let down felt rejected or less than. Most guys in the 1960’s were trying to get out of the draft, Strange me wanted to join and see some of the world. This was my first big let because of NF.

I then went into a local electronics school for two years 1969 to 1971. When I finished school I started my own business installing security and fire alarm systems. In 1972 I married my bride Gladys. Through this work I did knew people on the Fire Department and heard that they were hiring. I filled out the application and I got the job as a Firefighter that was in 1973. I still ran my business part time. Also that year I took some classes and became an E.M.T. I was thrill, despite my condition I was moving forward in my life.

In 1974 my wife Gladys and I had our first child a little girl we named Jennifer. Then in 1977 our son Patrick was born.
 

Patrick John Walsh - In Memoriam

While I was on the fire Department I did have a few tumors removed that bothered me while I was doing certain types of work. I was always back to work in a week or so. In 1980 I had some friends that were in the National Guard. They ask me to join too. I told them what had happened in the 1960.s where I was refused do to my medical problem. They told me to give it a try. So I signed and I got accepted in the Army National Guard. I was sent to Fort Sil, OK for basic training. I went through basic training at 30 years old with tumors showing on my body. I made through basic training without any problems. I then came back to Massachusetts to serve with my unit. Within 2 yrs I made it to E-5 Sergeant. I was very happy I had a good job as a fire fighter / E.M.T. my military and a nice family. In 1983 I was having a problem with tingling in my hands and weakness grabbing things. I went to several doctors and they could not find anything wrong with me. I knew something was not right and I was able to get into Mass. General Hospital to get checked out. They found my problem the first day there. I had a tumor between C1 and C2 on my upper spine. They told me that they had to operate right away. I could move the wrong way and the tumor could cut off some major nerves in my neck area. The operation went well removing the tumor and preventing further damage. After the operation I had very limited use of my arms and hands. Because of this I had to give up my job as a Firefighter and E.M.T. I also had to leave the National Guard. All that I loved doing was gone from my life. 

I also had to sell my alarm business, because I could not work. I was told that I was permanently disabled. I did collect for a while and kept forcing myself to do more. I was finally able to get a light duty job in a factory repairing machines. This condition was not going to keep me down. I would have more tumors removed during the 1980’s each time I worried what would happen if I could not work again. I found an answer to this and went back to school part time 1993 while working full time. There were many things going on in my life and another disease that I have started to kick in big way. That was my alcoholism. I drank very heavily for many years and I was not only hurting myself but also my family and friends. I finally realized that this was not an answer to my problems. It was only creating more problems with my health and my family and friends. I stopped drinking in 1997. I did try AA, but for some reason it did not work for me. I just had to wake up and see what was going on in my life and those around me. Our son Patrick told me just before he passed away in 2010, that he was proud of me for not drinking with everything that was going on with him. In 2002 I earned a B.A. from the University of Massachusetts. Through those years I would have several more operations. During one operation to remove a tumor from my leg, that was going to be same day surgery, I woke up 3 days later in the I.C.U. I had another type of tumor on my pancreas called a Pheocromacytoma. I was told they lost me on the operating table and had to bring me back. This Phoe tumor was removed a few weeks later.

John Walsh - Many Faces of NF
Watercolor portrait

In May 2013, I went to Massachusetts General Hospital in Boston to have 3 NF tumors removed. One was on my lower back just up from my tail bone and it was about the size of a golf ball. The other 2 were about half that size and were on the back of my left thigh. The surgery went well. I asked the Dr. if he could send these tumors off to the NF Lab for research and he said “yes.” He told his nurse how to prepare them and how to send them to the NF Lab. So now they have 3 tumors for more research and testing.

At this time in my life I am still able to work in the maintenance trades. If anything happens I do have my B.A. in Sociology / Social Services where I can use my mind if I cannot do physical work anymore. I do have some tumors on my body that give me pain. The worst one is on the sciatic nerve in my left hip. At times it gives me great pain mostly it happens when I sit for over an hour and a half. I have been told many years ago that it is inoperable.
 
For now I mainly worry about Jen and all others suffering from NF. I also have to worry about Gladys as she has to deal with the loss of Patrick from NF and I worry about Jen each day. I hope that the doctors and research can help all of us with NF and that they find new methods to help all those with NF and their families. I’m hoping that the research that I was part of will help find new methods for treating those with NF.

Case Study #12 - Garrett Drinking a Slurpee

"Garrett Drinking a Slurpee" 30" x 24" oil on canvas

I met Garrett through Facebook and was absolutely horrifed when I saw him posting about when hospice would be coming in to help ease his pain. I'm not sure an oil painting really eases anyone's pain, but I have never felt a sense of urgency as I have with this painting. I want Garrett to see all of the different stages and enjoy the final painting. These take me a very long time to do, so I guess that just means Garrett will have to tell the hospice workers they aren't necessary right now.

In Garrett's words:

This is Garrett and if it were not for NF2, I would not have a caringbridge site. NF2 is short for Neurofibromatosis Type 2. This causes benign tumors to grow on various nerves throughout my body. People with NF2 always have these tumors on both the left and right vestibular nerves. The vestibular nerve is part of the acoustic nerve so we usually have little or no hearing. I have no hearing on my right side and only 50 percent hearing on my left side. I have several tumors in my brain and dozens of tumors up and down my spine. I also have these tumors on my arms, neck, side, and back. That's enough about NF2 for now.

In Garrett's Dad's words on June 30, 2014:

Preliminary Sketch

We want you to know it is because of you that Garrett has NOT giving up the fight. He is a true NF2 warrior and he is not ready for hospice to take over. Your encouraging messages have renewed his spirit. It excites him to read and respond to your posts. He enjoys connecting with more people, seeing the run/swim/walk/bike in his honor, chat with friends, talk about sports, gaming and God. The NF2 crew have been an amazing cheerleading squad and he is listening. They understand his life with tumors and pain, and they have been a great source of inspiration. This love and support has given him a HUGE boost.

Today we met with Garrett's primary care physician to discuss our options. We have decided, with Garrett's permission, to give it one more final attempt to boost his immune system. We will be adjusting his pain meds to give him a more comfortable level, and will include home health care to provide a supplemental IV solution to his daily feeding. Garrett has been on minimal medical marijuana for some time, and will have a more deliberate program to see if it will help with pain, nausea and weight gain. He will be sleeping more, but if our efforts work, he might regain some strength and weight to improve his overall health. If we do not see an improvement in the next 6 weeks, we will need to continue our direction into palliative/hospice care.

We do not know how long Garrett will be with us. We know, without a doubt, that God is pleased with Garrett's determination and faithfulness. If he doesn't cross the finish line, we know it is not because he didn't give it his all nor keep the faith. The boy is a true warrior! From now until the AFC half marathon/5k race (August 17th), we are going full steam ahead. Please continue to send Garret encouraging words. He may not respond in the coming weeks if his sleep pattern increases, but please know that our efforts to fight NF2 will continue and we will keep you posted with caringbridge updates.

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.