Lizzy Getting Engaged
Putney, Vermont ~ 2019
Oil on Canvas
30" x 24"
What started as an eye doctor appointment for what was thought to be a lazy eye in July 1993, turned into a more significant appointment with an ENT. He ordered a biopsy that turned into a conversation about NF, that ended in “oh she has tumors, don’t worry about it.” As well as “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 pass 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. Starting school brought the beginning of the bullying. For years Lizzy couldn’t look in a mirror without sobbing and asking herself "Why do I look this way?"
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, and at age 14 she heard about Camp New Friends and started to feel connected to a community that understood what she was dealing with. 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 ago 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 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."
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, and at age 14 she heard about Camp New Friends and started to feel connected to a community that understood what she was dealing with. 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 ago 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 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."