Stem Cells…..Not For Me

There has been some talk about how the future of stem cells “curing” hearing loss is here NOW.

There will be a live webchat about this through HLAA (Hearing Loss Association of America) tomorrow night.

Yes, I can see how this could possibly benefit those who may have lost their hearing over time (vs born deaf). I can see how this could theoretically benefit newborns.

If it were available to me RIGHT this second…would I do it? No.

Why not?

I like my on/off button.

For someone like me….I would still run into the same problems with stem cells as I have with CIs and hearing aids. My brain just has never been able to understand speech because I didn’t have access to sounds AT all until I was almost 2. Then even between the ages of 2 and 3…my hearing loss was just so profound that I didn’t benefit from hearing aids except for some limited environmental awareness (and even that was pretty iffy at times). The critical ages for learning to understand spoken language is between birth and age 3.

I cannot imagine the shock and psychological impacts it would have on me if I were to do the whole stem cells thing.

Imagine if you woke up one day completely deaf. How would you feel? You would be lost. Confused. Scared. Unsure. Depressed.

That’s how I would feel if I woke up one day totally hearing without an off switch.

My on/off switch is very valuable to me. I just cannot imagine trying to handle hearing all the time. I don’t think I would have the skills to handle that. I would probably end up depressed and miserable…just because I know I don’t have the coping skills to handle being able to hear all day long and not understand what I’m hearing 24/7.

I’m not going to say that I would never ever consider stem cells nor am I going to say that I would even consider it. You never know what life will bring you. Either way…I would say it’s highly unlikely I would do it. I realllllyyyyy like my on/off switch. 🙂

Either way I’m highly interested in stem cells just because of the field I’m in (genetics)……not so much because I’m deaf.

Sand Flag Football

“Give it your best and forget the rest.”

That’s Tony’s motto (the dude from P90X).

I think our sand flag football has unintentionally accepted this as our motto. Even though we keep losing games we sure have heart and we still have a blast even when we lose.

I have been impressed with how we’ve been playing because we haven’t really played much together as a team…most of the teams we play against have played together for a while. We don’t have plays written up like other teams do. We’re not organized but we still manage to score touchdowns.

I do have to say that I wish girls had more access to this sort of game. I didn’t know I would enjoy it this much and I do wish I could have been able to play it growing up. Granted I don’t have much football skillz but I’m learning and am having a blast!

I can’t believe how quickly this football season has gone by and am a bit bummed that next week will be our last game (7 weeks). Even though tonight’s game was pretty cold (rainy/snowy) and wet!

We’re hoping to start a dodgeball team in January.

Props to my fellow football teammates for a FUN season and let’s hope we actually win the last game! 🙂
–Chris D.
–Chris T.
–Kevin
–Kelly B.
–Dennis
–Seth
–Charles
–Brittany
–Randi
–Margie
–Rusty

Planet Earth

People keep telling me to watch Planet Earth. I was channel surfing and happened to run across it. It was about the deep ocean….which has always fascinated me.

I was thinking about how awesome it would be to be one of the cameramen(women) recording all those fascinating deep sea creatures. Then I got to thinking about something I’ve thought from time to time.

Why is it that even though we see pictures of something we still MUST see it with our own eyes? I guess there’s just something about experiencing things in person. Even with HDTV….I want to see these deep sea creatures with my own eyes….even though they would look just like they do on TV.

How Did It Go With The CI?

How did it go with the CI?

A couple of people have asked me this question. I had expressed some concern about background noises at the conference. I had planned on blogging more about the conference itself and some of the presentations I found interesting but that will have to wait. Instead I thought I would do a quick post to answer this question.

I definitely had some high points and some low points with the CI.

Lowest point: The lowest point was my graduate school reunion held at a restaurant. I generally struggle with restaurants anyways but this one was just argh! I can sometimes tell when the person next to me starts to talk so I can look up quickly enough to start lipreading…this was not the case at the reunion. I’m not sure why it was more difficult than usual to just tell what the heck I was hearing…everything was just all jumbled and I wasn’t even able to tell if I was hearing voices or something else.

Then of course I was trying not to freak out because my interpreters hadn’t shown up (turns out they were downstairs waiting for an hour–there had been some confusion about exactly where the reunion was at). The lighting was crappy and I was operating on a grand total of 30 minutes of sleep. I was completely lost that first hour because I was just so thrown off by the fact I couldn’t find my interpreters, it was dark, I was tired (makes it harder to focus on lipreading), and it took a while for my class to show up.

I was tempted to leave since I was wayyyyyy out of my comfort zone but I decided to stick it out and do the best I could with the situation. Finally a few people I graduated with showed up and I was able to relax a bit more…they’re used to facing me when talking and they try to give me a general idea of what’s going on (they’re AWESOME about trying to include me). Then the interpreters showed up for about 45 minutes and I was on my own afterwards which was perfectly fine at that point. It did make me feel a bit better that the interpreters were really struggling to hear too. 😉 But it’s times like these that just make me feel like I’m back at square one because the CI just seems so worthless in situations like these.

Of course about 15 minutes before the reunion was over I finally started picking out when people near me were talking. Even though I don’t understand speech…just hearing a person’s voice makes a difference in terms of awareness (that’s one reason why I always wore my hearing aids too….just so I knew when someone was talking in general). In all, I’m glad I ended up staying. It was lots of fun catching up with everyone and meeting new people. A bunch of us went out afterwards….good times!

Highest point: I got up bright and early to head to the airport this morning. I was walking around trying to find somewhere to grab breakfast from….and I walked past one of those little booth stores or whatever they’re called and heard an employer say to me “morning!” without lipreading. Granted, there’s not that many possible options he could have said (morning, hello, how are you, etc.). However, I wasn’t even listening for it and I didn’t have to take the extra time to figure out what he was saying. I just automatically turned around and smiled back at him then walked down a bit before I realized that I actually heard/understood what he said without trying. This is the second time something like this has happened so it’s kinda cool but definitely throws me off because I don’t expect it….it’s so different from how I understand the world around me. It goes against everything I know about how to function in the world…for lack of better words.

Generally I always take my CI off whenever sleeping. I did the same with hearing aids too because 1) hearing aids whistles whenever I lay on it 2) I could never fall asleep hearing noises 3) it’s not comfortable laying on it. With the CI…sounds aren’t as forced and sounds are a bit more subtle so I’ve found myself dozing off with the CI on every once in a while.

I was exhausted because I only got a total of maybe 9-10 hours of sleep in 3 days and I zonked out on the airplane even with the noisy airplane. All of the sudden I woke up to a certain noise and it took me a few seconds to realize it was probably a baby screaming or crying and was a bit annoyed I woke up to that. Then after I woke up a bit more..I realized that was the first time I’ve ever really slept (and not just dozed off) with noises going on all around me and I was actually woken up by a baby…and that I was able to identify that sound half-asleep.

I have learned to never 100% depend on my CI just because I never know how or IF it will even benefit me in certain situations. I have to constantly adjust how I utilize the CI in different situations. I have to remind myself that no matter what I always have to be prepared to rely on myself…not interpreters….not the CI….not hearing aids…

A Quick Break

Am on my lunch break at the conference using one of the hotel computers so I don’t have much time to type up a good blog post.

One thing that is really sticking out to me today is just how everyone’s voices sound differently. I never really understood how someone could tell a person apart from another person on the phone based on their voices only. I do not have the skills to recognize a person’s voices nor do I have the skills to describe a person’s voice.

It’s been interesting listening to different lecturers because they definitely do sound different. Just the quality of their voices or something. Hmm!

It has been fun seeing old faces even though most of my graduating class couldn’t make it this year. 😦

The interpreters are doing a better job than I thought they would. I had pretty low expectations when the first thing they said when first meeting me was…”What’s the sign for genetics? Gene? Syndrome?” They admitted that they don’t have a science background but they are really trying their best and they do want to do a good job (not something I’ve always had at conferences)…which I really appreciate.

I couldn’t sleep a wink at all last night and got a grand total of 20-30 minutes of sleep so I’m chugging down some Mountain Dew to make it through the rest of today. 🙂

America’s Next Top Chef?

Anyone who knows me knows that I have no cooking skills whatsoever.

This is the gal who ends up baking the cardboard that frozen pizza comes with (sadly, I’m actually glad I remember to at least take it out of the box) even though the instruction clearly says not to.

This is also the gal who will start to boil some water and get impatient that it’s taking forever…so she tosses in a box of mac and cheese and cracks it up on high…..and then goes to her bedroom to work on some stuff….only 15-20 minutes later she finds herself jumping up out of her chair and running at full dash to the kitchen to see starch water overflowing everywhere.

Oh yes, this is also the same gal who decided to make pumpkin pie one Thanksgiving. Instead of putting in 1/2 teaspoon of salt she put in 2 cups.

So one may wonder why this 650-700 page cooking textbook is currently laying on my dresser.


Well, about 20 of us are getting together for a potluck Thanksgiving dinner the weekend before Thanksgiving. I decided I wanted to make a salad since I figured that would be pretty hard to mess up. I originally thought (and it was suggested by a couple of friends….who I think are afraid of my cooking skills) I would do something simple like a Caesar salad and buy dressing. If anyone has the ability to mess up a salad…it would be me! 😉

Then the more and more I thought about it…the more I wanted to be a bit ambitious and do something different! So, Seth (who is in a chef apprenticeship program–Seth, is that the exact name of the program?) decided to loan me one of his textbooks.

There are certainly some fancy recipes in this book! I think I’m going to try one of the recipes. Not sure how well the dressing will turn out. It’s going to be hard to pick just one recipe and I’m sure Seth will enjoy being a food critic with my salad! 😉

Atlanta Bound!

I’m all ready for the NSGC conference! My flight doesn’t leave until Thursday evening and I’ll be back pretty early Sunday morning. That’s kind of what happens when you click on the flight that’s $75 cheaper than all the other flights but you don’t know the times until you purchase the ticket. 😉

I’m looking forward to it. I know for a FACT that I’ll be meeting new people which will be great. It gets a bit isolated out where I’m at in terms of not knowing other genetic counselors in the area. I’m sure my friends have been getting a bit tired of my genetics blabbing. Heck…I even came up with a football play called the “DNA Helix.” I’ll leave that one to your imagination. 😉

I think this will be an interesting conference. Seems like more and more genetic counselors want to learn sign language and are interested in working with deaf patients (whoo!). I think it’ll also be interesting because I know for a fact I’m going to struggle with background noises. I never had an issue with that with my hearing aids because I never benefited enough from my hearing aids to care about background noises. Even though I don’t understand speech with the CI and I prefer sign language as my main mode of communication….the CI does help some with lipreading….and I know at the conference I’m going to have to switch back to lipreading solely because of background noises. I also haven’t been around hearing people nearly as much this year as I have in past years (which I do miss).

It will definitely wear me out watching interpreters and lip reading all day long (especially people I’m not used to lip reading on a daily basis). I’m still looking forward to it though. I think the sign language interpreter might be interesting. What many people don’t realize is that just like verbal language….there are different accents (signs) in different regions. It sure took me a while to get used to NYC’s sign language. Some of the signs were so DIFFERENT from Midwest signs that I actually had to ask them to be spelled out. I’m curious to see if the South’s different in terms of regional signs or not.

Hope to see you all at some point during the conference!

Ah yes, thanks to everyone who commented on my last post about airports and CIs. I asked my audiologist also. She said generally it’s fine to go through the metal detector and most of the time it will not wipe out the programs. However, she knows of someone who lost all of his programs from going through a metal detector at a courthouse (ack!). I guess most people tend to travel with their backup processors. She suggested that since I’m currently using my backup processor (my other one’s broken and am waiting for the replacement part) to be safe than sorry and to “test” it with the metal detector on my way back here rather than on my way there.

Cochlear Implants and Airports

I have a couple of questions for those who are CI users and have flown frequently with their CIs.

1) Is it okay to go through the metal detector and put the processor in a bag that goes through the x-ray machine? Has anyone had their programs wiped out from doing this? My understanding is that if I wear it through the metal detector then it may wipe out the programs but not if it goes through the x-ray machine?

–This seems to initiate a debate! 🙂 Some people say it’s okay and others say it isn’t. And yes…I know the importance of carrying that “I have a CI” card especially when traveling 🙂

2) Is it really a must to turn the CI off when taking off and landing?

–I know it’s okay to leave hearing aids on during take off and landing….but I’ve read a couple of times that people with CIs need to turn the processor off. If so, why is this?

Thanks!

Trying to Become Deaf Part 2

I knew I was forgetting something when I typed up the last post. I remembered it as soon as I shut down the laptop.

I meant to ask this question. I’m kind of playing devil’s advocate here because I want to know your thoughts on this.

Why is it acceptable to want to be hearing and to go to great lengths to become hearing…however…it’s not generally accepted to want to be deaf and to go to great lengths to become deaf?