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Faced With Impending Deafness, Woman Creates ‘Bucket List’ Of Beloved Sounds

Rhianon England has NF2, a disease that causes non-cancerous tumors to grow throughout the nervous system. Recently, a tumor returned on her auditory nerve and she wants it out. If doctors remove this tumor she will lose the rest of her hearing, but if they don't she could suffer from facial paralysis.

Sound Effect Senior Producer Arwen Nicks spoke with Rhianon England about her GoFundMecampaign GoFundMe campaign to raise the money she needs to hear all the sounds she loves while she still can. A transcription of their conversation is provided below: 

NICKS: Rhianon England has NF2.

ENGLAND: That’s short for neurofibromatosis type 2.

NICKS: Neurofibromatosis type 2 causes non-cancerous tumors to grow on her nervous system. She’s had them on her spine, on her brain – and Rhianon has been aware of her diagnosis for as long as she can remember. 

ENGLAND: My mom, I think, got diagnosed and then they tested me because my eyes started going wonky. And so I’ve known ever since the day I was born.

NICKS: But when she was diagnosed decades ago, doctors were still learning about NF2. There were things they didn’t know yet.  

ENGLAND: They didn’t know that it’s nearly 100 percent likely everyone with this disease is going to go deaf. They didn’t know that.

You know, we were in a small town, we had to drive a couple hours to a  neurosurgeon - because my mother had it - it’s a hereditary disease -and they didn’t know how to help her, you know?

They didn’t know really what was happening. She never had the surgeries she needed that would have helped her. She died at age 37. 

NICKS: Rhianon was a senior in high school when her mother died, and she was the one who found her. 

Twenty years later, because of NF2, Rhianon has lost quite a bit of her hearing. 

ENGLAND: In my right ear, which is my worst ear, I only hear about 30 percent. The better ear, which is the left ear, I think it’s more like 60.

I don’t know – I do okay in, you know, quiet environments. It’s just,  you know, you get me in a restaurant or a bar – forget it. [laughs] So.  

NICKS: Part of her hearing loss came 10 years ago, when doctors first found a tumor on her auditory nerve. They were doing everything possible to save Rhianon’s hearing.

ENGLAND: So they did remove it just to buy me more time. And they did! No one thought I was gonna get 10 years, you know. They thought maybe a couple… 

NICKS: Yeah. 

ENGLAND: Before it grew back, you know? 

NICKS: But it’s back now. 

ENGLAND: It’s back. 

NICKS: Rhianon’s hearing is threatened again. If they’re aggressive and remove the entire tumor.  Rhianon will lose the rest of her hearing. If they don’t, she could lose the ability to smile.  

ENGLAND: I – I want it out. They’re still trying to save the hearing, you know. They want – they talked about going in and taking out a little bit more again, and – how many times can you keep going in there?  You know? [laughs] Like I already got one nasty scar, you know?

I want them to be more aggressive and remove as much as of it as they can and – save the face. I want to smile - more than I want to hear. 

NICKS: Talk to me a little bit more about that. When you say, “save the face,” what do you mean? 

ENGLAND: So in your body – your nervous system – your hearing nerve, your balance nerve, your facial nerve; they’re all clumped together. And when a tumor is sitting on one of those it compromises the other two.

So, my - you know - my balance is poor. I already have a little, like, facial – I  wouldn’t call it pain. It’s just kind of a little – it’s a little numb, you know? And, I just know it’s time - because you know, when you have facial paralysis you can’t chew; You can’t speak very clear; you can’t – you can’t do a lot of things, you know? You can’t kiss somebody even, it’s just – 

NICKS: You can’t smile.   

ENGLAND: [Laughs] Yeah, it just doesn’t work! You know?  

NICKS: And so, you want them to go in and remove this, because you want to be able to save what you have of those functions now. 

ENGLAND: Yeah, yeah.

NICKS: But in doing so, that takes away the hearing. 

ENGLAND: Yes, it does. And – and that’s a sacrifice I’m willing to take.  

[background music begins]  

NICKS: But this is a story of a silver lining. If Rhianon gets the course of treatment she wants, she is weeks or months away from being completely deaf. Knowing that, she decided to make a list. A hearing bucket list. And at the very top of her list is music.

Rhianon was a musician when she was younger, before her hearing started to go. And there’s one musician in particular that she feels a really strong connection to – Brandi Carlile. 

[Brandi Carlile's “Until I Die” plays in background]

ENGLAND: If I had to pick the last thing to hear on Earth, that’s what I’d want to hear. I love this chick!  [laughs] So.

NICKS: When Brandi Carlile announced her most recent tour, Rhianon entered a contest to try and see her play at the Red Rocks Amphitheatre in Colorado.

She lost that contest, but it didn’t stop there. Her friend Kelly took up the mantle. She created a crowd funding page for Rhianon. They were going to get her to the concert. They were going to get her to hear all these sounds.

They called it “Rhianon’s Hearing Bucket List.” Money started coming in - fast. They hit their original goal on day five, with a little help from an unexpected donor. 

ENGLAND: Brandi donated a thousand, and crossed us over the finish line and it was day five. And it was  just so quick and, you know, I jumped out of bed – “Oh my god!” – you know, and – that was amazing!  That was amazing. That was almost better than the moment itself, you know, like of getting to go – that she even knew about this was pretty awesome.  

NICKS: Rhianon and her girlfriend were able to see Brandi Carlile twice this last year, first in Spokane and then at the Red Rocks in Colorado. She sent me this recording from that show.  

[Recording of Brandi Carlile singing: “There is nothing worth sharing like the love that lets us share our name.” - guitar playing - crowd cheering - Carlile sings: “Always remember, there is nothing worth sharing like the love that lets us share our name.” - crowd cheers.]

NICKS: Since we first spoke this summer, she has checked quite a few sounds off that bucket list. The crowd at a Sounders

game.  [Sounders fans singing and clapping - crossfades with sound of crickets]  

NICKS: And crickets. 

ENGLAND: I can’t remember the last time I could hear this. It’s good to hear it again. 

NICKS: It’s a long and growing list. Rhianon wants to take her girlfriend with her to hear the ocean. They hope to fly to Nashville for some shows. Maybe they’ll go to New York City and hear the sounds of cabs honking and full streets – take in a Broadway musical. But Rhianon knows what’s going to happen.  

NICKS: Are you at all worried about going deaf? 

ENGLAND: Oh yeah! [laughs] It’s really hard to be deaf. I can’t do this with you when I’m deaf. You know? [laughs] 

NICKS: Yeah. 

ENGLAND: I know sign language. I started learning, like, ten years ago. I don’t think I’m very good at it, but I know enough. I can still meet people and sign, you know?

It’s gonna be hard, there’s no doubt about that. Like, my girlfriend, she doesn’t sign, but she learns little bits; we’ll get there, you know? Like, we’ll figure it out. And same with all my friends, you know? Not all of them sign.

Yeah, I’m worried about it.  I’m sure I’m gonna be sad about it again, you know, once the date actually gets scheduled, I’ll go through  another circle of depression.

But, I’m actually really more looking forward to getting it over with because  I’ve spent my whole life dreading it, you know? I’m ready to come out the other end. 

NICKS: And does this feel like the other end for you – if you can have this tumor removed and that’s not a question anymore – that feels like you’re on the other side of something?  

ENGLAND: Yeah, yeah, that’s the hope. And then, with this disease, the deafness thing isn’t gonna be my biggest problem. I can grow tumors anywhere in the nervous system, so – the spine, other areas of the brain.

I mean, one day I could end up blind, you know, and in a wheelchair. And a lot of my NF2 friends are, you know? So, deafness is nothing [laughs] compared to everything else, you know?  

NICKS: And you’ve seen it happen? You saw it with your own mother. 

ENGLAND: Yeah, yeah I see it every day. Like I, you know, all my friends, you know – a lot of people die at an early age from just all the complications of NF2.

And, maybe I’m not gonna win a lot of votes for this, but I’m actually okay [laughs] with dying at an early age because I don’t want to live like that.  That’s not living. You know, like, not being able to take care of yourself and being stuck in a chair.

You know, I – that’s kind of why I’m going all out on this campaign. I’m not saving a penny of this. Like, all the  money is gonna go towards more hearing things. You know, and I’ll keep adding to the list as suggestions come. 

NICKS: Rhianon just got another MRI. She has yet to schedule the date for her surgery, but she hopes to  have the tumor removed before the end of this year.