My local news did a story on a theoretical link between my employer and ALS. I declined to be a part of the story.
After seeing the report, I am certain I made the right decision to refuse to be a part of it.
They used my photo without permission, which is really annoying.
That’s all I have to say publicly about it.
Okay so wow.
I KNOW BETTER THAN TO READ COMMENTS ON THE INTERNET. I KNOW.
But this was important. This is something I care a lot about. If someone out there wants more information about this, I’d like to be able to step in and help out. And Jack asked if I’d seen them, and linked me, so I clicked.
Most of them? Lovely and supportive. Hooray for those people. I love them. And my friends who spoke up in support. I love you.
But a hearty FUCK YOU to the shitshark who felt compelled to comment “Pretty lady if she didn’t put all that metal in her face.” Yeah, I got enough of that oh, at EVERY FAMILY GATHERING GROWING UP EVER. And I didn’t give a shit about how my FAMILY felt about it, why the fuck would you think YOUR opinion matters to me? Get fucked SIDEWAYS. I didn’t have to weigh in though. My posse stepped up and put him straight before I got there. <3 These other ones, though. HOLY SHIT, people. "My father died because of ALS. He was one of four in one family. And I tell you to have the voice record is the smallest problem you will have when you have ALS!!!" "Mom passed from ALS in 93, not bn able to talk was the least of our worries. Absolutely horrible disease" …I've actually heard of people approaching someone with ALS and say, "It's going to get so much worse" ..AT A MOTHERFUCKING SUPPORT GROUP. GOD DAMN IT, PEOPLE. Here's a clue you are so DESPERATELY NEEDING: Telling someone with a terminal, degenerative disease "it's going to get worse" HAS NEVER BEEN USEFUL TO ANY ONE IN THE HISTORY OF FOR FUCKING EVER. The only one who get ANYTHING out of that is YOU because you get to feel OH SO FUCKING KNOWLEDGEABLE. Your dad has ALS so OBVIOUSLY YOU KNOW ALLLLL ABOUT IT and someone who actually HAS this disease HAS NO IDEA WHAT THEY ARE IN FOR so you had BETTER TELL THEM. Fuck you. Keep your fucking mouth shut. NEWSFLASH: You are NOT helping. You are NOT helping me prepare for the harsh realities of the disease. You are NOT educating me. You are not even freaking me out. You are JUST PISSING ME OFF. Let me educate YOU. When you are going through the medical rat maze of trials and tests, and ALS is among the possible exits, THEY TELL YOU ABOUT THE DISEASE. If you didn't know about it already, THEY TELL YOU WHAT IT IS. When you narrow it down, THEY TELL YOU A LOT MORE. If you don't do the sensible fucking thing and research it yourself, there are medically trained professionals who will talk to you about it. THE PROCESS OF DIAGNOSIS COMES WITH AN EDUCATION. And here's something I did NOT know. When you are diagnosed? THEY GIVE YOU BOOKS ABOUT IT. Seriously. Like, six of them. My diagnosis came with an appointment with a social worker, and she had books for me, a book for the people who would be my caregivers, and pamphlets about estate laws and wills and power of attorney. People bend over BACKWARDS to tell you anything you could possibly want to know. And by "people" I mean TRAINED AND LICENCED MEDICAL PROFESSIONALS and not "some stupid opinionated bitch on the internet." So let me be the first and hopefully last to let you know, you're not helping. You're not wise. You're obnoxious, detrimental to my emotional well being, and a waste of my time. It alllllllllllllll goes back to the Silk circle, and the magic phrase: "I'm sorry this is happening." Comfort in. Otherwise shut the fuck up. And if you make the mistake of telling me "it's going to get worse" to my face, I will obligingly tell you all of this in person. And just when you think I'm done yelling? It's going to get worse.
I’m very, very glad I took the whole day off. Social anxiety is exhausting!
The reporter was scheduled to come at 9. Shana, the Assistive Technology Services Coordinator for my local chapter of ALSA, showed up early so we could devise our battle plan. I really like Shana – she’s good people. We met for lunch Tuesday, and I liked her instantly. The reporter ended up being late, due to “breaking news” (there was an officer involved shooting that morning), so we just hung out for awhile while my nephew’s cat Brobee whored himself alllllllllllllllll over her. Seriously, that cat is ridiculous. Luckily, Shana is also cat owned, so she was nice about it.
The reporter and Camera Guy Pete arrived around 9:30, and they…were both really nice people, actually. I was kind of expecting someone plasticky and false, but she was very nice, and won me over when she not only said hi to Brobee, but pulled up a picture of HER cat on her phone. Cats. They bring people together. Hehe. They set up the camera at my dining table, and then the interview was…very quick and informal and I hope to GOD I was half articulate. She asked how old I was, when I was diagnosed, and was surprised when I said just this last April. She asked several questions about voice banking, and I hope I came across as passionate and not stupidnerdy about the whole thing. And then she asked how ALS has affected me so far, because she’s not seeing it.
“Well there’s these,” I said, swinging my legs around. I wore a knee length skirt that morning, with purple houndstooth knee socks, so the braces were not in your face, but not hidden either.
“Oh, I didn’t even realize that’s what they were. I thought maybe they were..a goth thing?” hahahhaha what.
“Well I’m going to replace the velcro with leather, so it will seem even more intentional then, ” I told her.
They interviewed Shana on my couch, next, and she was very passionate and bubbly and full of hope and information. Awesome. They filmed me walking up the stairs, and then we set up in my office. Shana sat next to me while I did the thing, and I showed them around the very simple ModelTalker software. I recorded a couple of simple phrases, demonstrating how I could play it back. Marilyn (by the way, the reporter’s name is Marilyn. Probably shoulda said. It’s the same name as my mom, so that was weird.) asked me about banking custom phrases, and Shana explained that’s not really ModelTalker, that’s just something separate that you can do; make a recording of your own phrases and then put them along with the Artificial You on your soundboard so you can just hit a button to say “WORD UP HOME SKILLETS” or whatever. She asked if I could do some of that, so I pulled up Adobe Audition and recorded “Seriously? …SERIOUSLY.” for her, and played it back, and showed how I could crop the file to just include the phrase. She asked me to record “I love you” so I did that, and then, with Shana’s giggling prompting, I recorded, “You are getting on what might actually be my last nerve.”
It was glorious.
And then I looked over at my doorway and the reporter was stifling a laugh so I felt a lot better about the whole thing.
Pete filmed me walking down the stairs, and then filmed me in my kitchen pretending to bake something. Well I was actually baking, but mostly it was waiting for eggs to become meringue for macarons. (Which didn’t even turn out in the end because I was super distracted and not doing it properly, but they still tasted okay.) They packed up, then, and all said their goodbyes and headed off to talk to the other woman involved in this story, who is much further along her progression and uses ModelTalker. She’s apparently on a vent, so the idea of us all meeting at my house was laughable.
It was around 11 then, so I played around with Sims3 for about an hour and then took a nap for four.
Overall, I think it went okay. Hopefully I was semi-articulate, and was able to convey some of the awesome energy I feel about the ModelTalker option. BECAUSE VOICE BANKING IS AMAZING. They assured me I did alright. Marilyn said that the story isn’t likely to run next week, but the week after; but she’d email us to tell us when.
And when I know, I’ll let YOU know.
I’ma geek out for a minute about voice banking. Ready? Here we go.
Voice banking is one of the most amazing things to happen for people with ALS, or any kind of degenerative disease that robs someone of their voice. Model Talker allows you to record your own voice, from which they’ll make a synthetic version for use with a text-to-speech program. It effectively lets you “talk” with your own voice, after the disease takes away your ability to speak.
It’s amazing and important and I’m SO GRATEFUL that it exists and that I’m allowed to participate in it. It’s currently in beta, and anyone can apply to be a part of it. ModelTalker is a program you install on your computer, and then you record yourself saying prompted phrases by speaking into a USB microphone headset. It’s best to bank before the disease hits your voice, so that your computer generated voice is as true to your natural voice as possible; so the sooner people with ALS know about it, the sooner they can start banking. It’s a fairly sizable time commitment – I understand there’s about 1600 phrases to record before they have enough sounds to create your voice from. The sentences I’ve seen so far include lines from The Wizard of Oz, and the phrase “There’s more than one way to remove a tooth.” I’ve only just started; I recorded the calibrations and the first ten sentences last night. They’ll listen to the samples, and suggest changes, and then I’ll record the next set. I will be sitting at my desk and recording goofy sentences for hoooouuuuuuuuurs.
But it will be TOTALLY WORTH IT, when my computer generated version of me calls someone a fuckwit for the first time.
This technology is SO IMPORTANT. It’s completely dehumanizing, being unable to properly communicate with others, and that idea frankly scares me. The fact that speech synthesis exists at all is fantastic, don’t get me wrong, but we need to take it a step further. Just look at Dr. Hawking, his voice..it’s become a joke, how robotic his communication is. To have to rely on a robotic voice to tell someone you love them? To try to explain to your loved one why you’re crying with this…fake, cold, not-really-a-voice? That is the worst thing, and I can’t even imagine the stress that adds to an already horrible situation. ModelTalker gives you back some semblance of who you were, to continue to be who you are. It gives you back a little bit of what this stupid fucking disease takes away from you.
I was contacted some weeks ago by my local chapter of the ALS Association wondering if I would like to be part of a local news story about voice banking.
I said yes, please.
They’re going to come to my house next Thursday and film me doing some recording, and then interview me about it. I’m really happy to have the opportunity to evangelize about this technology, to let people know it exists, and it’s out there for free. Technology is solace for people with ALS. It helps us travel when we can no longer walk. It helps us communicate when we’ve lost the ability to speak.
It helps us continue to be human, for just a little bit longer.