Monday, July 15, 2019

Case Study #64 - Micki Baking Peach Pies

"Micki Baking Peach Pies" Oil in Canvas. 30" x 24" 2019.
Micki Cole always wondered what the “spots” were on her body and why she had so many “birthmarks” on different parts of her body. Despite having gone to many doctors regarding headaches, pain, struggles in school, it would take her 25 years and a chance encounter with a radiologist to lead her to the answers she had longed for all those years and she received her diagnosis when she was 25. Micki struggled in school, mainly difficulties in math and was placed in special education classes. With the assistance from her family, Micki was tested at the Mayfield Clinic in Cincinnati, Ohio and it was found that Micki was gifted and placed back into mainstream classes, but she still struggled. In high school teachers weren’t supportive, and she was often discouraged from exploring things she was interested in, at one point even being told “she wasn’t college material”. Growing up Micki experienced pain in her legs and grew very fast reaching five foot seven by fifth grade, this pain was diagnosed as growing pains and the horrible headaches were said to be attention seeking behavior, something she tried to explain was real but was often ignored. Despite what she was physically going through Micki was extremely active in sports, running track and field and playing softball.
Prep Sketch for oil painting

After high school Micki worked and put herself through college, it was there where her life changed. In high school she was picked on for having skin that looked different and for having “bumps” all over her arms and legs. But in college she met a group of friends who accepted her and helped her come out of her shell, she learned about true friendship and she is still friends with these people twenty-five years later. It was also when she learned about Neurofibromatosis (NF). When she was twenty-five Micki was sick and went to the emergency room with difficulty breathing, upon having an x-ray the doctors discovered a “spot” on her lung and suggested follow up. The radiologist Dr. Roush happened upon Micki as she was getting dressed and noticed the café au lait marks. He said “oh, you have neurofibromatosis”? With a puzzled look Micki asked, “neuro what”? Micki had never heard this despite having gone to several doctors over the years regarding “the spots”. After this interaction and a referral to his friend, a dermatologist, she received confirmation of NF1. Upon the initial diagnosis Micki was terrified from what she found in medical journals and the difficulty she had trying to find a doctor to treat her. But luckily, she found a doctor who knew a doctor that lead her to a wonderful group of doctors at The University of Cincinnati who help her navigate the ups and downs of NF1. Micki has had a hysterectomy in addition to surgeries to remove tumors from her lung, leg, arms, back and eye. After much consideration and research, she made the decision not to have children due to the risk of passing it on. Micki continues to deal with chronic pain and has had to learn to adjust to life with it.

Despite the diagnosis Micki has gone to college and graduate school where she graduated in the top five percent of her class. She has worked with people with disabilities for over twenty years. Micki has hiked a small portion of the Appalachian Trail even making it up to the top of McAfee Knob in Virginia, while her softball days are few and far between, she has found a new passion for baking, gardening, hiking, biking and golf. She has completed 4 half marathons to raise awareness of people with disabilities and has raised money for NF research with these half marathons. You can find her on nice days doing one of these activities or volunteering for a few different causes.

While receiving the diagnosis and living with NF is not easy for the individual or the family, Micki wants to let the world know that people with disabilities hidden or visible are people too. You too can reach your dreams with determination and support from loved ones. On bad days when Micki is struggling with pain from NF or struggling with feeling down and isolated because it hurts for someone to touch and comfort her. She tries to remember, God gives his toughest battles to his strongest warriors. Micki will continue to fight for her fellow NF Brothers and Sisters.

Friday, July 12, 2019

Case Study #63 - Jose Renewing his Vows

"Jose Renewing his Vows" - Oil on Canvas. 30" x 24". 2019
Jose grew up in the Riverdale neighborhood of the North Bronx, in New York City. He lived there with his stay at home mother, his father a US Postal Carrier, and his older brother. At a young age, Jose knew he had several café au lait spots but was always told they were birthmarks. He was born with NF1, passed onto him from his father. It wasn’t until he was a teenager that he knew he also had NF. His doctor never brought it up, and his family had a very little understanding of it. Jose would wear a t-shirt in the pool because other children would ask him about his spots, and that made him very sad. They would taunt him, and say many hurtful things. It wasn’t until his teenage years when he started developing confidence in his appearance.

prep sketch
Years later, life brought him to the beautiful Pacific Northwest, and he resides in a suburb of Portland, Oregon. He has been married to his wife Stephanie since 2008, and they have three girls: Dalia, Shea, and Izabella. Shea and Izabella also have NF1. With a better understanding of NF, the Torres family has worked hard to create more awareness around NF in their community. They worked with a local dance academy to put on a recital/fundraiser that raised thousands of dollars for the Children’s Tumor Foundation. Additionally, they raised money to light up an iconic bridge with Green and Blue on NF awareness days, and they have taken part in multiple NF Walks. Although the tumors have become numerous in Jose’s adult life, NF1 has not stopped Jose from loving life, and he does not allow his NF1, and the bumps (tumors) on his skin define him. Stephanie and Jose are raising their children with that same attitude. When Jose isn’t spending time with his family, he is enjoying his job as the Associate Director of Sales and Training for Oregon Market, a large retail company. 

The painting is of Jose, on one of the best days of his life. He is renewing his vows with his wife of 10 years. She has not only been the best life partner he could have, but she has become a voice, and force creating NF awareness in the community. On September 15th, 2018 Jose and Stephanie were finally able to have the wedding they always wanted. It was just a few days after their 10th wedding anniversary. 10 years ago, Jose’s mother was suffering from a terminal cancer known as Multiple Myeloma, it was very important to both Stephanie and Jose that his mother got to see him get married. They scheduled a date at the court house, and his mother was able to see her youngest get married. Between a move back to Oregon from New York, 3 children, and a full decade the time was finally right. The day was perfect, many family members, and friends spent a beautiful evening together celebrating the love that Jose and Stephanie have for each other. 

Jose encourages everyone with NF to not let NF alone define them, and seek out what makes him or her happy. He fully understands the difficulty that NF can cause in people’s lives, and hopes that one day it is a thing of the past. He encourages all NF fighters to keep fighting, and spread the word. He believes that through awareness, we can find a cure.