Case Study #75 - Tina Lacing up her Cat Shoes

Prep sketch for "Tina Lacing up her Cat Shoes"

Tina's NF was confirmed at age 13 when she had a fibroma removed and tested. Tina grew up with learning disabilities and speech issues. Now she is a wife and mental health therapist. She is a wife and mother of two young adult children one who also has NF1.

Tina experiences a pain that is best described as sending volts of electricity throughout her body. This chronic pain is a constant for her which means 24 hours a day x 7 days a week. It is the kind of pain that stops her from breathing, and causes migraines and severe upper back pain as well. The back pain is due to plexiform fibromas on her spine. Unfortunately, no physician will operate on those. Tina does not take narcotics, but has been begging her local university hospital to get the trial drug. Calling monthly, a year later, the drug trial became a reality. Tina just started taking the magic blue pills which is her last hope for pain relief. So far she has had good results.

Eight years ago Tina had an aneurysm and died momentarily. This was also caused due to her NF. Her near death experience forever changed her outlook. She is happy to be alive even living with all the side effects of NF1. During that experience, God let Tina see and feel what life would be like if she went to Heaven or stayed here on earth. Heaven was a euphoric feeling which she feels guiltily for leaving behind, because it felt so utterly unbelievable. Staying alive meant lightening volts of pain, deep breaths that hurt, anxiety and tears but all of that with her family. Family memories of watching her children grow into amazing adults her wonderful marriage made staying alive the right choice.

Case Study # 74 - April Embracing Star Trek

"April Embracing Star Trek"

April was born in Providence, Rhode Island. She was sick at birth which prompted doctors to label her a 'failure to thrive' and wanted to take her away from her family to be institutionalized. Her mother refused. While growing up April was surrounded by medical professionals who came into their home all the while assessing as to whether her mother could prove April was able to thrive and that she could take care of her.

Prep sketch--April enjoying her Star Trek book.

April had to prove she was, indeed, capable of thriving. At the age of two she was diagnosed with NF1. It was a spontaneous gene mutation and by age three, she was diagnosed with a  ganglioneuroblastoma. A genetic disorder and cancer diagnosis at the same time did prove difficult for her mother. Her mother fought for her, and April survived. April was a very quiet child who endured many surgeries. April's friends were imaginary and she would pull them out of the sky for comfort. Her school years also proved difficult as she was constantly made in fun of due to her appearance with NF and skin color. She did bond with a friend in school during that time and is still friends to this day. 

April had to prove herself in school as well. Administration assumed she needed special needs classes so she had to continually prove her intelligence. With the help of her mother by the end of high school she was in college prep level courses and went to a technical school afterwards. During her formative years, there were several surgeries to monitor the NF and countless doctor appointments to both monitor and to ensure cancer would not return. Growing up in the 80's and 90's a lot of the doctors were new to understanding NF. One doctor, unfortunately, actually called her his "guinea pig". 

Growing up she didn't like people as much as she did animals. She used to volunteer for animals in Woonsocket. Later she did manage to get jobs and keep them, As an adult she still battled with surgeries most notably the tumor on her face which cracked her hard palate. Upon checking the doctors found that the tumor has reached all the way into the brain. Surgery had to be done in which they replaced the palate with a plastic device. Afterwards, April had to learn to speak properly again while still going to work. However with all the maintenance of physical illnesses, mental illness was ignored and hardly mentioned due to her preference for silence. She was diagnosed as schizoaffective along with other mental and physical disorders and was placed on disability. 

In the 80's and 90's April embraced Star Trek which changed her world. Life went from seemingly grim, dark and hopeless to bright, hopeful and beautiful. And, most importantly, in Star Trek appearance meant nothing just the character's actions mattered. Currently, April spends her days giving to charities when she can, playing video games, starting trouble on facebook and of course enjoying Star Trek.

Case Study #73 - David Feeding the Fish

"David Feeding the Fish" 30" x 24" Oil on Canvas. 2020

David Ware was born in 1954 in Columbus Ohio and was born basically blind in his right eye and had numerous surgeries throughout the years to remove tumors that grew back. David is the only person in his family to have NF. His parents and two brothers were born in Texas which meant trips back every year to see his maternal grandmother. Every summer trip came with a surgery to work on his right eye. David says, "I would always be sitting in the eye doctors chair crying my eyes out because I felt I was ugly and unlovable and wanted him to give me an artificial eye but he never would because I had limited vision in the eye."

Prep Sketch for painting

David's dad was in the Air Force and the family was transferred several times. David remembers Topeka, Kansas where he attended kindergarten and Wichita, Kansas where he entered 1st grade. In 1963 the family moved to Lincoln, Nebraska where he started 3rd grade and graduated in 1973 from Lincoln Northeast High School. In 1974 David attended Oklahoma Baptist University until 1976 when he came back to Lincoln and received an associate degree in Business in 1978. In the 80's during an MRI the doctors found a tumor on his left thalamus but decided to just watch it as they did not know exactly what it was. Having problems with severe headaches, in 1998 David went to the Mayo Clinic for a biopsy and learned it was a low grade pilocitic astrocytoma and again the team just wanted to do yearly MRIs because to attempt to remove it might be fatal or leave him severely disabled. At that time, they guessed he would have about ten more years. Evidently, David fooled them as he is still kicking. He now suffers from chronic dizziness headaches.

David sold his house and quit his job of 14 years and moved to Idaho and got married in 2004. He went on social security disability in 2004 as well because of NF. The marriage did not last and in 2010 David got divorced and moved back to Lincoln to be with family and friends. In 2018 he found a neuro-ophthalmologist who was willing to remove his right eye and prepared him for a prosthetic eye. He finally had his prosthetic eye, something he had been asking for since he was a child.

NF: Nebraska - Portraits from Life

Tina Gunn - February 21, 2020 (Gretna, Nebraska)

Drawn from life by Tina's kitchen table

 I've known Tina for several years now. She was one of the first people in Nebraska that I met who was living with NF. Both she and her son, John have it. Her son is about four years older than mine and I remember how comforting it was when she would explain some of the challenges he was facing because my son also has similar struggles. Today was an unseasonably warm day at about 45 degrees especially considering yesterday was 8 degrees. That is just typical in Nebraska, so I was on cloud nine with the sun shining and such warm weather.

Tina only lives about 15 minutes away from me in Gretna. While I was driving over there, she called and said that she couldn't find her car in the parking lot at UNMC so it would be awhile. What is rather funny is that she called her husband who came over and showed her that it was parked right where she thought it was! I told her that when Henry had brain surgery in St. Louis, I went out to the parking garage and couldn't find my car and called him to come out of PICU right away because I was convinced someone had stolen our car during surgery. Jeff, who was a bit more level-headed walked me down a floor and there was our car. Let's just say I was thankful that Tina also lost her car in a hospital parking garage! haha...

One of the many pairs of cat shoes

I have to admit when I was drawing her, I kept messing up the eyes. This led her to tell me she had one eye bigger than the other. That might be true, but I finally realized I had not judged the distance between her eyes correctly. There is nothing worse than drawing someone's portrait and having them think there is something quirky with them! Honestly...this is why the fundamentals of drawing are so important. If one aspect of a portrait is wrong it just looks wrong. I don't want it to sort of look like Tina, I want it to simply look like her.

While I was growing impatient with myself and my drawing, Tina got up and to my surprise she had all sorts of snacks. What artist doesn't love snacks?! I am seriously a grown adult and I was giddy over a rice krispy bar with m&m's in it. She also sent snacks home for my boys. Fred's eyes lit up when he saw the salsa garden sun chips.

I knew I had to take a break from the charcoal portrait so we tried to figure out what to do for her oil painting. That is always tricky to do on the spot. Most people don't just want to be cleaning or doing something mundane. In the course of looking around the house, she shared her love for cat shoes. I had no idea that she collected shoes with designs of cats all over them. I didn't even know that was something a person could buy. I probably have maybe 10 pairs of shoes/boots total. I think Tina had about 7 pairs of shoes with cat designs on them!

I came home and put the portrait away and made dinner. After dinner I took it out again and knew what I had to do. So strange that a little time away helps me to look at something fresh and be able to fix it. I like it now and hopefully she does too. 

John Schafer - January 31, 2020 (Lincoln, Nebraska)

Drawn from life near their kitchen so as to get some of that nice morning light.

Today I drove down to Lincoln to draw John. I met his parents back in 2014 at the Cupid's Undie Run held in Omaha (money goes to CTF for NF research). This family has done so much to help raise NF awareness from holding online auctions for donations, participating in a marathon event in Lincoln, Racing for Research with CTF and the list goes on. Even with all of that, I still had never met John. He is a very handsome and charming young man. He has a dapper look and a very fun mustache that looks like he could either be a pirate or a poet (try to figure out that visual--haha).

We chatted about all sorts of things and interestingly NF was not really one of them. Although John did mention that his brain tumor has been stable for so long that he no longer has to do yearly MRIs. I thought I was going to fall out of my chair! Is that even possible? That seems like some sort of dream come true.

I was interested in his job at Target and his different discounts and whether or not he got a discount at the Starbucks located inside. He and Andy also talked about all of the different boy scout camps they attended and similar to my boys they also attended San Isobel Scout Ranch in Colorado. They went to the one in South Dakota that our troop was considering for this year too (although our troop picked a place in Minnesota). I was interested in his Eagle project as it is interesting that both he and my son are Eagle scouts.

Before I left, John showed me his impressive collection of vinyl. It is like some sort of flashback to see a bin of albums again! It made me think of my childhood and how I had to save up for my Journey album!

Emily Pfeiffer - January 8, 2020 (Lincoln, Nebraska)

Drawing done from life while sitting in my living room.

I had painted Emily's portrait a few years ago for a show that was coming up at Creighton University. Her mother, Sharon, had taken so many pictures that I just wasn't really interested in. During a conversation, her mom had told me how much they enjoyed the yearly neighborhood block party and all the games they'd play. We settling on Emily tossing a balloon as a fun and interesting painting.

"Emily Tossing a Water Balloon"
30" x 24". 2016. Oil on Canvas

When I reached out to Sharon to see if she and Emily would be interested in sitting for a portrait, I was so pleased to hear that not only could they sit for one, they had a lot of availability due to Sharon's retirement. I knew with the spring semester starting that I would just busier and busier so I asked if during the middle of the week (while my boys were at school) would work. As an added bonus, Sharon mentioned how much Emily enjoys going to the Westroads, so they would just drive up to Omaha. I have to admit, initially I wondered if they should drive to Creighton and sit in a formal studio, but then I thought...why not just come to my house?

I found it so relaxing to have another person present while drawing Emily. I am used to just drawing subjects one to one and at times it can get very quiet and I believe they can get sleepy. I sometimes can talk and draw simultaneously, but at other times I really like to be focused on what I need to do. What I found was that by having Sharon there to visit and tell stories, it allowed both Emily and I to relax and model and draw without having to keep up the conversation the entire time.

Sharon and I commiserated about some of the healthcare professionals out there (I won't name names) who do not seem to understand NF, nor do they believe the parent when he or she tries to explain what the tumors are and where they were located. A place in Lincoln actually told them both that Emily did not have a brain tumor because they couldn't see it on their MRI. She has a brain tumor and Sharon already knew this. They, of course, don't go to that facility for care. We had a similar experience at a facility in Omaha, so I've been there. It is so important to have a team of specialists that actually understand NF and sometimes that takes leaving your town.

It appears that Emily has had some hearing loss since I had painted her portrait in oil. She also has some balance issues that made me nervous with all the icy conditions on our driveway, but they did okay. 

When I finished the charcoal drawing Emily got a big smile on her face and immediately sent an image to her brother. I took this as a good sign that she liked it! I also think they were both off to do some shopping at Westroads Mall!

Dave Ware - December 17, 2019 (Lincoln, Nebraska)

Drawing done from life while sitting at David's apartment

I drove down to Lincoln, Nebraska as finals were wrapping up for Fall semester: December 17, 2019. It was a beautiful day, sunny and temperatures in the 40s, no winter weather which is a blessing this time of year. When I got to David's apartment, he was waiting for me and had a Coke ready!

I spent about 2.5 hours at his place drawing him and chatting. Growing up in Texas, David is the youngest of three sons and the only one in his family with NF. When he would ask his dad at what age he was diagnosed with NF his dad would just cryptically quip "You were born with it!" That seemed to be the extent that his father wanted to talk about his diagnosis. His brothers are in town, but they don't get together too often, mostly just at holidays.

Prep Sketch for possible larger drawing

David talked about how he got bullied as a youngster for his NF as not too much was known about it while he was growing up. He graduated from high school in 1973 and went on to get a business degree. After working for many years, he finally went on disability due to his NF. He currently has two inoperable brain tumors, depression, ADD and is on several medications due to his NF. He feels lucky to have a van in town that picks him up to take him to his local doctor appointments. He used to be able to drive, but he can no longer do that. He doesn't really miss driving that much, but he does miss the freedom that comes from being able to drive.

Because of his NF, he lost his eye and was recently outfitted with a glass eye. I, personally, think his glass eye looks amazing and it fits really well into the socket. He had been wanting one since he was a teenager, but no doctor wanted to take on the challenge of removing any good eye tissue. He finally met a doctor that would do it and he is so happy with the results.

As I was drawing his portrait, David told me that he had been married for awhile to a woman in Utah who also had NF as did her son. Unfortunately, the marriage did not last and David returned to Nebraska. They had met in a Facebook chatroom, but he has not gone back to the chatroom since.

David spends his time now enjoying his aquarium filled with colorful fish. He cares for his succulent plants and uses his window sill to line them up making a rainbow of color from the plant holders. He is currently looking for opportunities to showcase his photography skills as his apartment is adorned with all of his plant and fish photos. He is a big Husker football fan and loves Nebraska. When I drew his portrait from life, I told him he could sit in the chair I was sitting in if that was more comfortable than sitting on the couch. His couch is so comfortable that he told me he will often fall asleep right there instead of getting up and going to bed.

David allowed me to take several photos of him feeding the fish and just lounging on the couch. I typically paint 30" x 24" oil paintings of people with NF just doing what they enjoy so I may still do that painting, but there was something about the comfort of him laying so casually the entire time on the couch that got me thinking differently. Typically, when someone has never been drawn before from life, they ask me over and over again if they are sitting okay or if they should sit a different way. Not David. I told him to be comfortable and he did just that! It was a treat to draw him and I am thinking this sketch might either become an oil painting or large charcoal drawing.

Case Study #72 - Barbara Snorkeling at the Lake

"Barbara Snorkeling at the Lake" Oil on Canvas. 30" x 24" 2020.

Born in February 1985, a healthy rambunctious and overall normal child, Barbara was born with no outward signs of NF symptoms. Most of her childhood was spent playing in the dirt, joining in softball games, and riding bikes. Other than being clumsy, she was just a typical child. Barbara retained semi good grades all throughout school. She was well known for her ability to draw. After being accepted to a few colleges, she decided that she would actually take a year off in between and travel. Barbara's travels found her living in The United States Virgin Islands working as a bar back and waitress. She was having the time of her life! Then one day in 2011 she woke up and realized she couldn’t walk. She crawled around and when she finally could walk; her foot on the right side would constantly drag. Barbara was immediately flown to her home state of Maine where her life changed.

Prep Sketch

Barbara was diagnosed with NF1. She had thousands of internal tumors, two in particular were in her cervical spine and had caused almost a full spinal cord impingement. Since that day, Barbara has had seven surgeries. NF has left her weak on her right side and she can no longer hold a pencil to draw and hasn’t been able to in many years. NF has made life a struggle. but she really doesn’t mind, she would love for a cure to NF. Her motto is "Life is beautiful even when it’s not." Barbara lives in a small town where not many people have ever heard of NF. Every year she contacts different advocates and hospitals and NF clinics including the one that she receives care at, Mass General in Boston. She gathers reading material and flyers and passes them out to all of the physician's offices in her area. Barbara even carries personal business cards that have her picture and a brief description of NF. The business card also includes links to NF Northeast and the Children’s Tumor Foundation for further research and donation options.

Case Study #71 - Júlio Enjoying the Afternoon

"Júlio Enjoying the Afternoon" Oil on Canvas. 2020. 30" x 24"

Born in Brazil, Júlio César is a 33 yr old man currently living in Mateus Leme. Júlio was 6 months old when he was diagnosed with NF1. He is one of 5 kids including his 4 brothers and sisters. Júlio was adopted so he is not sure if his birth parents had NF or not.

Prep Sketch

Júlio does not have a job and currently lives with his mother who takes him to his various doctor appointments since he cannot drive. He has had about twenty surgeries due to his NF, mostly when he was younger. These took place in Rio De Janeiro. Now he goes to the NF Clinic in Minas Gerais. His doctor, Dr Luiz Osvaldo studies NF treatments in the United States to keep current. Júlio is apart of a NF group in Brazil mostly online through a WhatAp group.

Because of NF, Júlio was born without his left eye. Having just one eye is something he is used to now, so it doesn't really bother him. Besides the large plexiform tumors on his head, he also has small tumors covering his body. He also has a plexiform on his arm as well as his belly and back. The doctor is concerned about the tumor on his arm but is waiting to see what happens.

Júlio likes to travel. His favorite place to go to is the beach often especially in the town of Guarapari. He says that he has a nice quiet life.

Case Study #7 & #70 - Henry Checking the Weather

Prep Sketch for Henry Checking the Weather

2019 ~
6 Years have passed since I completed the original painting. I was fortunate enough to have an exhibition at the Albrecht-Kemper Museum of Art in St. Joseph, Missouri this year. I've been exhibiting this painting around different venues since I painted it. After 6 years, my son is no longer a 4th grader with a pocket weather alert system. He is a sophomore in high school who would never wear a plaid shirt and he hates wearing jeans as well. He typically only wears long sleeved t-shirts of his favorite teams (KC Chiefs being his all time favorite). I wish I could say that he wears a coat when there is snow out on the ground, but he goes without whenever he can. He uses his phone to check the weather now. He has not changed his mind about his vocation as he still wants to be a meteorologist. The new sketch simply reflects the same theme, but is much more who he is today.