Neurofibromatosis Awareness Month
I don’t talk about it much, but I have a medical condition called Neurofibromatosis (NF for short). While it affects everyone differently, the common factor with the 25 million people in the world that have it seems to be that we all have tumors that grow on our nerves. Every once in a while I get some questions, so in honor of Neurofibromatosis Awareness Month, I am going to share some of those questions and unsolicited comments (both good and bad) I have received for the greater educational good:
Lady: Do you have cancer?
Me: No
Lady: Oh, well you should be glad you don’t have cancer. My cousin had cancer and it is terrible.
Educational moment: Sometimes you might feel embarrassed or moved to make the person with NF feel like they don’t have it so bad. Don’t do this. Especially when you put them in the position to talk about it. Cancer is something on my mind every time I go in for my annual MRI. I don’t need you to tell me how to feel about it.
California Lady: My brother is a plastic surgeon. He could help you.
Me: No, he can’t. I have had 5 surgeries on my face and had it reconstructed by plastic surgeons. This is the result. These tumors are attached to nerves so they cannot be fully removed without nerve damage. My other option is indefinite chemo.
Educational moment: Plastic surgery is cheaper and more easily accessible than ever. Lots of people have elective surgery to fix parts of their body they do not like. People with NF might have dozens of surgeries in their lifetime, and many of us learned from an early age that surgery does not cure us. It is a temporary fix. If we are lucky, it might help our self-esteem to see our bodies resume the shape of other humans around us, but it is not a given.
A plastic surgeon: This is nothing. Do you know the people I operate on? People with massive growths who can’t even walk. People with such deformities that they can’t even see! This is nothing. You don’t need surgery.
Me: Ok.
Educational moment: It’s important to note that not all of the bad experiences come from the uninformed public. Sometimes they come from the medical profession. This particular episode left me in tears. I was in an NF clinic where you sit in a room all day and the individual doctors visit the room to answer questions and evaluate you. You don’t get to decide what doctors you see, which is why I felt so attacked. The plastic surgeon made me feel terrible for asking whether he thought I should look into more surgery.
Little kid: Excuse me, may I ask what happened to you?
Me: Yes, you can!
Educational moment: This little boy was the most polite human I have EVER been approached by! This is exactly how someone can ask me nicely about my face.
My voice student: All of my scars are internal and I get to choose who to share my pain/trauma with. You don’t get that choice. I’m sorry.
Me, on the verge of tears: No one has ever said that to me before. Thank you for acknowledging that.
Educational moment: This was recent, and it was really lovely to hear. Sometimes I feel like a walking museum. In San Francisco people generally ignored/accepted me as is. In LA I felt like folks looked at me with a little bit of envy for being so imperfect. In Boston I got gawked at a lot by what I can only assume were medical students. Now I get to wear a mask up here in Maine and it feels strange to cover up and realize people are looking at me for reasons beyond my chin.
An acquaintance and mom of someone with NF: I would never be able to get up on stage and sing, especially looking like you do.
Me: I don’t know what to say to that.
Educational moment: Just because you think it, doesn’t mean you have to say it, my dears. Also, I really hope you don’t talk like that to your child with NF.
A friend: I noticed you started using the hashtag #neurofibromatosis in your profile. That’s a big deal. How do you feel about that?
Me: Thank you for noticing. It’s taken me a lifetime to get here and talk publicly about this.
Educational Moment: As a friend of someone with NF, you have the ability to be a major support by not being afraid to ask questions and check in from time to time when you notice something different. It’s a relief to talk to someone about my NF. Most of the time it feels like a burden to talk about it, so when asked in a sensitive and thoughtful way, I’m more than happy to share.
At the end of May I’ll be releasing my full EP and I’m very excited to announce that I’ll be raising money for Neurofibromatosis Northeast, an organization that works to help folks in the Northeast that are living with neurofibromatosis, at the release concert. More to come!