Case Study #62 - Lizzy Getting Engaged

"Lizzy Getting Engaged" - Oil on Canvas. 30" x 24" 2019

In July of 1993 Lizzy Hubbard's family and her life changed. What started as an eye doctor appointment for what was thought to be a lazy eye, turned into a more significant appointment with an ENT. He ordered a biopsy that turned into the conversation about her having Neurofibromatosis, that ended in “oh she has tumors, don’t worry about it.” As well as other nonsense like “she's going to be blind and/or deaf, She will have mental delays, she wouldn’t be able to do what ‘normal’ kids do and she won’t live passed age 9” Not too long after that procedure the tumors started to grow.

Lizzy has two prominent ones in her face and neck. They hurt, and they can’t be removed easily.
Soon after that she started school, and with that brought the beginning of the bullying, and later when she realized that she looked different however she didn’t understand why. For years Lizzy couldn’t look in a mirror without sobbing and asking herself "Why do I look this way?"

prep sketch for Lizzy Getting Engaged

When Lizzy was 6 she finally got to meet others who had gone through similar struggles (although with different conditions). She started to become slightly more comfortable with how she looked, but still was getting bullied a lot, with comments ranging from “did she get hit in the mouth with a shovel” to “If I looked the way you do I’d have killed myself years ago.”

It wasn’t until Lizzy was 10 that she met someone else with NF, but she really didn’t stay connected with them. At age 14 she heard about Camp New Friends and started to feel connected to a community that understood what she was dealing with and could give her advice on what to do or just let her vent. Even though she had met many others and started to feel connected to this new community the struggles with how she looked were (and still are) very much in the forefront of her struggles with her identity and confidence. Up until about a year who she would be extremely uncomfortable with wearing her hair up, unless she had to. 

Lizzy is slowly gaining confidence in who she is and learning that NF is part of her identity and accepting that she can’t change her appearance nor can she change how people react to it. Yet she can change how she reacts to how others reactions to her. Lizzy has also thrown herself into fundraisers for NF like the Cupid’s Undie Run.  To quote her, "I have NF but NF doesn’t have me."

Case Study #61 - Ashley Doing CrossFit

Ashley Doing Crossfit - 2019 - 30" x 24" Oil on Canvas.

Ashley was diagnosed with NF Type 1 at the age of two. Her NF was due to a spontaneous gene mutation. Starting at age two, she started undergoing MRIs. School was hard for her because of her learning disability. But she didn’t want NF to define her, so she found out how she needed to learn to understand things better. Ashley graduated high school with a 4.0 GPA. She also attended Valley City State University and graduated with 3.56 GPA. Then she went on to Massage Therapy School and graduated with top honors..

Ashley remembers coming home many days from school crying because she was bullied for the fibromas she had on the outside of her body or because she was going to different classrooms to learn or take tests. Ashley had a hard time trying to fit in because of how people looked at her because of her bumps and she felt like an outsider. Sometimes to this day she still feels like an outsider because of her NF, but does have a couple good friends and some amazing family members who mean a lot to her. They don’t treat or look at her different just because she has NF.

Prep sketch

Some NF side effects Ashley deals with daily include slower hand-eye coordination, balance issues, dizziness, numbness in her right hand and right foot, constant nerve pain throughout the body and headaches. Comprehending some new things are still hard for her, as well as reading and spelling sometimes.

Ashley has multiple MRIs every 6 months to once a year on her brain, whole spine, hips, pelvis, and breasts. She also has PET scans every 4 to 8 months. Ashley travels to the Mayo Clinic in Rochester MN from Fargo ND about every 3 to 6 months for doctoring for her NF due to having no qualified NF specialists in North Dakota. Ashley has to have biopsies now and then when a neurofibroma looks suspicious on the MRI. She has many fibromas inside her body and also on her skin. So far she has only had to have one major surgery to remove a neurofibroma from her left side of her neck that was on the vagus nerve ~ the fibroma was over the size of a lime. She has also had many neurofibromas removed on her skin due to the shooting pain in that area if it was ever touched.

Dealing with the nerve pain Ashley experiences daily, she enjoys attending a CrossFit gym 4 to 5 days a week and runs 2-4 miles a week on her days off from CrossFit. Ashley started CrossFit in March 2017. She shows up consistently and does the work even on her bad days when the nerve pain and numbness is higher than normal. There are some things she needs to modify during the workouts due to her nerve pain throughout her body and the numbness in her hand and foot. In January 2019 Ashley was awarded the Grit award from CrossFit Fargo during the athlete appreciation social.

Ashley is a licensed massage therapist and reflexologist and owns her own Massage Therapy business called Ashley Rae’s Massage which she opened in 2011. She has a steady client base and keeps very busy with that.

In October of 2016, Ashley ran a 10K to raise awareness for NF. She ended up raising $1550. She beat her goal of 1 hour and ran the 10K race in 58:16. She got to wear a Run for NF singlet, during the race. Ashley now goes to Washington DC every year to talk with congress to help raise awareness for NF and asks for NF research funding through the Congressionally Directed Medical Research Program (CDMRP).