30 Days Until the Silence Takes Over

August 27, 2008 1:34 PM

What would you do if you only had a month left to hear? With a disease that put tumors on her brain stem, Jessica Stone was given a month to savor the sounds in her world before surgery took away her hearing for good. Her story ran on Good Morning America.

I first read her story on the fan boards for her favorite artist, Matt Nathanson. Warning: if the internet hasn't broken your soul, this may make you cry at your desk.

posted by sjuhawk31 (23 comments total)

Can she hear herself talk? Can she still talk? How curious and unusual to become fully deaf as an adult.

Also, sad story and I feel for the woman, but apparently I have a broken soul. Off to kick some puppies I guess.
posted by GuyZero at 1:44 PM on August 27, 2008 [2 favorites has favorites]

Can you kick the puppies my way? I want one!

In the video, she talks with just a little bit of impediment. She is learning sign language, as is the rest of her family, and she may be a candidate for cochlear implants.

I can't believe I just spelled cochlear without use of spell check.
posted by sjuhawk31 at 1:47 PM on August 27, 2008

So it was a little unclear from just reading the article exactly what got damaged or perhaps I missed it. I assumed it was nerve damage in the brain but if she can get a cochlear implant then it must be mostly the ear itself. Certainly it would be tempting as I expect it is as hard to learn as a foreign language.
posted by GuyZero at 1:58 PM on August 27, 2008

Thank you, mattbucher, I feel less lonely now. Even after crossing the Atlantic, your comment was still audible.
posted by Dumsnill at 2:03 PM on August 27, 2008 [2 favorites has favorites]

Here's the antidote for this post.
posted by Rhaomi at 2:04 PM on August 27, 2008 [1 favorite has favorites]

Definitely a tear-jerker.
posted by vertigo25 at 2:16 PM on August 27, 2008

Jesus, I was deaf in one ear for a week because of an ear infection and, even apart from the pain, it nearly drove me round the bend. Sadly enough, I think I would probably just give up in her place.
posted by uncleozzy at 2:21 PM on August 27, 2008

I'd probably listen to your favourite band for four straight weeks. That way, when I finally went deaf...well, I wouldn't feel like I was missing out on much, y'know?
posted by turgid dahlia at 2:40 PM on August 27, 2008 [1 favorite has favorites]

Can she hear herself talk? Can she still talk? How curious and unusual to become fully deaf as an adult.

My fifth and sixth grade teacher (Mr. Abramson in Duluth, MN if any of you were there) was struck deaf as an adult from some infection or whatever.

He could speak, though it was slurred somewhat and by the time I met him, he was pretty good at reading lips. But because he couldn't hear himself, if you got your ass chewed, EVERYONE knew about it for several blocks (yeah, I got yelled at alot). His wife worked as his assistant, and together they taught sign language as part of the regular curriculum.

A side note - he was far and away the best teacher I ever had, and I wouldn't be who I am today without him and his wife being who they were.
posted by Pogo_Fuzzybutt at 2:43 PM on August 27, 2008

OK, I've been wanting to confess this for a long time. Many years ago, a deaf guy applied for an editing position with my newspaper. None of us wanted him to be hired because the first job a new person had to do was work with the the type-setting guys in what was called composing room (no, not music) and answering the phone when other editors called down was important. If he couldn't answer the phone, he couldn't do the job and no one else wanted to be stuck with it. So we all complained until he wasn't hired.

Oh. And I may have laughed at a Helen Keller joke or two.

I'm very sorry. It was a long time ago.
posted by etaoin at 2:55 PM on August 27, 2008

Surprisingly enough, I must still have a soul...cause...damn! That's a tear-jerker.
posted by The Light Fantastic at 2:56 PM on August 27, 2008

I don't understand why she can't speak, but all I had time to read was the GMA article (can't watch videos at work).

I wear hearing aids. I have two now, but for a long time I had just one, and when I ran out of batteries or it broke, the world became completely different. I wonder if she has auditory hallucinations.
posted by desjardins at 3:12 PM on August 27, 2008

Oh, no, I'm not crying. I'm just... chopping some onions. Yes. That's it. Onions.
posted by grapefruitmoon at 3:44 PM on August 27, 2008

I don't understand why she can't speak

Because she's forgetting what speaking should sound like.

Think about it. The reason any of us can speak is because at some point - for almost everyone, as toddlers - we all started to realize that we too could control the sounds coming out of our mouth. The key was that we could a) hear the sounds and b) associate meaning with specific sounds. That's a very short definition of how people learn to talk.

Take "a" away though - that's why deaf people have so much trouble talking. Some, those admirable ones who try so very damned much harder than most of us will ever understand, can still slur out something that sounds like words but is often hard for normal listeners to clearly comprehend.

I was talking with a guy from a church I went to once - he was the piano player, and he was blind - blind from birth. He played beautifully and when asked to do a song he didn't know by heart, he'd play it with one hand while reading the braille for it with the other. So I wanted to talk to him. We got to talking about what its like to be blind from birth. He said he wished he understood what color was. He was in his mid-forties and he simply had no understanding of what color was. I sat there for a while and tried to think of ways to explain it to him. He knew what I was thinking and told me that a lot of people had already tried. The best I could give him was that its "like the other senses" - some things are softer to the touch than others, some things taste sweeter than others, some things smell fouler. Some colors look more pleasing to us than others. And we all have our individual tastes in such things. I don't think I helped him much.

I think a deaf person trying to understand sounds and their related meanings is a lot like a blind person trying to understand color. If you're deaf from birth, you just can't, really. If you had a chance to hear at one point, you probably remember, but it probably fades with time, too.

I've known deaf people myself. I have a friend who doesn't have the sense of smell, even - although it doesn't seem to impair her much - only in that her taste is extremely limited. My mother and a couple of my friends have MS and all of them know what its like to lose the sense of touch - one of them walked over glass once without knowing it til she was standing in a puddle of blood.

I think its a toss-up between losing your hearing or your sight. Both have their very significant disadvantages. Both are really sad. I wouldn't wish either on anyone.
posted by allkindsoftime at 3:50 PM on August 27, 2008 [2 favorites has favorites]

How curious and unusual to become fully deaf as an adult.

I don't think it's all that unusual. There's a support group in my city, and they hold social events and stuff. I know there's some online organizing for late-deafened people. (Warning, perhaps ironically: that website has sound.)

I read an article a while back about how the internet has been a godsend for people who become deaf as adults. The article was specifically about email, and it wasn't very recent, but I bet that it's even more true of IM, Blackberries, texting, etc. Basically, it used to be that instantaneous written communication was reserved for deaf people, and it required expensive, specialized technology. Now it's totally mainstream. Becoming deaf is less socially isolating than it used to be.

I've got an inner-ear disease that often causes adult-onset deafness. I probably won't go completely deaf, and if I do I'll probably be able to recover some hearing with cochlear implants, but I've definitely considered the possibility. And I think it's in the range of things that you can deal with. Her freaked-out-but-optimistic attitude makes sense to me.
posted by craichead at 4:05 PM on August 27, 2008

Heartbreaking. I can't even sleep without the sound of a fan, soft music, faint noises from the street, the rush of a distant highway, thunder, or rain. Luckily, one can still understand love without having to hear "I love you".
posted by greta simone at 4:12 PM on August 27, 2008

I have no idea what I'd do. Jesu.

My family has a history of ear troubles and I've had various infections - and I'm sure my hearing has been damaged from a life time of playing music and going to shows - but I can hear just fine when it comes down to it - someone talking upstairs in the hall, out in the street, my typing, the faint whirr of the laptop... what would I do, what?

This life breaks your heart every day. I was walking down 14th Street today and saw an older man sitting on the ground, head in his hands, with a sign. I put a dollar in his cup and he looked up at me, smiled and said very clearly and politely, "Thank you very much, Sir." For just a dollar - and I'm 95% sure he wasn't a user once I looked him in the eye. How did he get there?

"If God lived on Earth, people would break all his windows."
posted by lupus_yonderboy at 4:35 PM on August 27, 2008 [1 favorite has favorites]

I was especially inspired by her story because it made me remember how lucky I am. I have almost no sight in my left eye, and sometimes I wonder what it'd be like to have the full field of vision. Then I saw this and I feel selfish.
posted by sjuhawk31 at 5:31 PM on August 27, 2008

This is heartbreaking and beautiful. It reminds me that I am very lucky.
posted by mewithoutyou at 5:33 PM on August 27, 2008

One side of my family has some kind of inherited hearing loss (without having listened to loud music all their lives), so adult deafness is very common for a lot of my relatives, especially later in their lives. One relative has severe tinnitus that interferes with hearing so much that she might as well be deaf. I remember asking her once if she would prefer complete silence over the tinnitus; she said yes.

I don't know if I'd miss voices as much as music, though. I'd probably spend most of those 30 days listening to as much music as possible. It must definitely be harder for musicians. Really not sure how Beethoven dealt with that.
posted by Ky at 6:39 PM on August 27, 2008

Because she's forgetting what speaking should sound like.

I don't know if this is the case for her, but that's not always why speech is hard for late deafened adults. I've spent a few weeks or months with no useful hearing before, and it's not that you forget how to speak, or what things sound like; it's that you have no feedback. You can't tailor your volume to the environment, because you don't know what the environment sounds like, and you're not sure how loud you're talking. And you don't notice when you're starting to slur or mumble, so where a hearing person would correct right at the start - such that it would barely be noticeable - you do it more and more.

I had much more trouble understanding my family during these episodes than they did understanding me, and I'm a pretty good lip reader, since I grew up hard of hearing. But I did have to repeat myself a lot more than usual, and in some situations, I was completely dependent on them giving me cues to speak louder (or quieter).
posted by spaceman_spiff at 6:50 PM on August 27, 2008

Really interesting. Of course my immediate reaction is "I couldn't bear life without hearing". I am a musician, I speak four languages and I'm in love with their sounds.

But, come to think of it I wonder what complete and total silence would bring with it. I've been to a couple of places with an unusual degree of silence (inside the Medanos de Coro in Venezuela and the San Luis Potosi desert in Mexico) and I was surprised by the effect that such amount of silence has on the way one thinks. On the process of thinking.

Even in the quietest apartment in a city there is a lot of noise we have grown to be used to. There is an extra load of work that your head is doing, like background processes, as a result of being exposed to all this noise. I didn't realize that until I was in those isolated places, and the effect grew as the days went by.

Then there is the extra factor that, as a musician, I hear music in my head all the time. I hear beats and riffs that turn into songs with choirs and orchestral arrangements and the most unusual instruments. All the time. Most of the time I don't even pay attention to it, but it's still there and I never heard it as clear as when I was in the Medanos or the desert.

So yeah, I probably couldn't bear life without hearing, but now I wonder if being unable to hear the outside would have me listening to all that music more clearly. I wonder if it would drown after a few days, or if I would still be hearing it long after I can't hear anything from the outside.

Some months ago I went to see the Simon Bolivar Youth Orchestra, conducted by Gustavo Dudamel. Just before one of the pieces on the program started, as everyone in the orchestra had their eyes on the conductor, a cell phone rang. Dudamel, a gracious Caribbean lad, turned to face the audience smiling. Without any hint of snobbery he told the audience that, yeah, it was very important that everyone turned their cellphones off, and he elaborated: it was not because he wanted to feel as the authority in the room, it was not because the "Higher Art" demanded it, but because they are musicians, and, despite the fact that every musician had sheets with the instructions to play, the music could only "be born" from silence. Silence, he said, complete silence, is inevitably the start of the music.
posted by micayetoca at 8:20 AM on August 28, 2008 [1 favorite has favorites]

About 30 years ago, I got an eardrum broken and didn't know it until it got infected and I lost the hearing in that ear for about a week, and then both ears for another week. (I had just gotten a new job, which I got fired from for being deaf, which was fair, as I was not hearing impaired when they hired me.)
Back then when you broke an eardrum, they picked the scab off with a needle to prevent the hole from closing around the scab and healing with a hole in it. Twice a week. For all summer. They said if this did not work, they would graft me a new eardrum from the skin of my forearm, but it would never work as well. They gave me the appointment during the entire building's lunch hour, because back then they didn't have AC so they left the windows open, and my screams could be heard from the 5th floor to the street. I hope they have something better now.
I remember when I lost one ear, and it was horrible, because I had no idea where sounds were coming from. The part when I lost both ears is mostly a blur, but bad. By then, they had insisted I would get it back so I didn't have time to panic.
posted by unrepentanthippie at 2:58 PM on August 28, 2008 [1 favorite has favorites]