Cochlear Implant-The Decision Making Process

Ok…Ok…so I know I said I wasn’t going to post until after January 3rd, but my brain has been spinning like mad about the CI situation.

Basically, I’ve been seriously considering a CI for almost a year now. It keeps getting put off for several different reasons. One reason being that I want to be sure I’m not just jumping into something. Another reason being that I needed to focus on finishing graduate school and taking advantage of other opportunities.

Going through the CI evaluation process has kind of taken the back burner. I want to be sure that I’m not missing out on any other opportunities that life has to offer me because of my decision to receive a CI. In other words, I would much rather have gone to Europe this past summer than having had to sit around recovering from surgery and going in for mappings.

In a lot of ways I think my decision has been made. I’m just trying to be sure that I’ve covered every possible tidbit of information I possibly can. I want to be sure that I’m making a well-educated decision that’s the best for me personally. That involves going through a CI evaluation process too.

As I sit here typing this, I’m thinking about how I’m glad I waited to make my decision about a CI. I spent the first 6 months of this year living with hearing people and interacting with hearing people who were not fluent in sign language on a daily basis. The second half of this year I’ve lived with people (my parents) who I can communicate with using a combination of speech/sign language and I’ve been surrounded by deaf friends. I have a interesting mix of deaf friends…some are hard-of-hearing, some are culturally deaf, some are CI users, some prefer hearing aids, some don’t use a CI or hearing aids, and some are strongly against CIs. It’s been interesting how my perspective of CIs hasn’t changed dramatically from the beginning of the year compared to now. I thought for sure it would change with being in completely different environments.

I’m not going to “officially” announce my decision until I undergo a CI evaluation process and get some more hard core information from a CI team regarding risks. I want to be sure that whether I decide to receive a CI or decide NOT to receive a CI…that I can back up that decision…otherwise I will always regret the fact that my decision was not a well-informed one.

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Happy Holidays and Happy New Year!

Saturday, we went over to my Grandma’s for Christmas with my mom’s side of family. I bought a friend with me (Morgan) which was nice because then I had a buddy to chat with. It was great to see everyone and it’s always fun watching the little ones open their gifts. I wish we had thought to take a picture of the whole family.



I’m taking a break from blogging until at least January 3rd. I’ll be busy enjoying Christmas with family and friends. Then I’m off to Colorado to do some snowboarding with Tara (hopefully I’ll pick it up quicker this time and won’t crash as often as I usually do). We’re going to stay at a hostel and take advantage of free lift tickets for a week.


Enjoy the holidays and have a Happy New Year. Be sure to cheer on KU in the bowl game on the 31st! Btw, Tara and I can’t take credit for making the poster we’re holding below. Someone from abc handed out pre-made posters for the Times Square crowd to hold while taping.

The Year in Review 2008

I decided to go ahead and post this early. I will probably forget with the holidays then I’m heading to Colorado for some snowboarding (who can turn down free lift tickets?!).

I have had an amazing year. I was able to travel the world, something I never thought would ever happen. I got to meet some amazing people and also have been able to spend time with family and friends.

I actually somehow ended up with 7,000 pictures from this year. I managed to get it down to around 50-60 for this slideshow. 7,000 to 50-60….not bad. lol. (btw I put it on the fastest speed so you wouldn’t have to suffer through all the pictures at a slow speed).

Enjoy!

Unprofessional Interpreters and Graduate School

Interpreters.

*sighs*

There are many wonderful interpreters. For every one skilled and professional interpreter there are 2 unprofessional interpreters. At least it seems that way to me. It may seem like I “complain” a lot about interpreters but in reality I let TONS of things slide (gotta pick my battles). Things that many people wouldn’t. I do have my limits though and they were tested throughout graduate school. One of the main things I struggled with were unprofessional interpreters and rotation supervisors who didn’t believe me when I bought up my concerns. It’s hard when I’m the only one who really understands what the interpreter is saying and what the interpreter’s role is. Then if I “complain” or bring up a concern, I look bad and I have absolutely no one to back me up. There were a few situations where I really felt like no one believed me because their perspective was different from mine. They often time see someone really nice who is helping out a deafie and they see me as a whiny ungrateful deaf person. Interpreters are usually nice, but they’re not always doing their job. And who is the only one who knows when they’re not doing their job? Me.

Another issue that oftentimes come up is one where interpreters actually act like they’re superior to deaf people. Some interpreters are so used to working with a different group of deaf people and they’re used to taking on the “helper” role. Whereas when they interpret for me, they have a hard time accepting the fact that I know more about something (genetics) than they do. They have a hard time accepting help when I offer explanations of genetic concepts, terms, or spellings (to help make their job easier). They’re used to be the “helper” and not receiving help. I believe it’s a 2-way street and it’s a team (I help them, they help me….we’re equals)…whereas some interpreters believe it’s a one-way street and they’re better than their client (me).

The toughest situations were ones that would arise while I was counseling a patient. I couldn’t necessarily handle the situation right there and then in front of the patient. However, there were a few times where I had to…but I had to do it as gracefully as possible. Sticky situations.

The Deaf culture is very blunt in general and it’s not uncommon to hear a person’s whole life story including the most personal information within the first 10 minutes I meet a culturally Deaf person. There are several reasons for this, but I believe one reason for this is because deaf people don’t always get the chance to talk freely without working hard to overcome communication barriers. It’s almost a relief when they meet another deaf person and they don’t know when they’ll next have that chance. Now, for some odd reason some interpreters decide to do the same thing when they’re supposed to be in a professional setting.

Here are a few of my interpreter experiences from graduate school. Keep in mind I really did let lots of things slide, mostly because I would usually have one interpreter for a 2-3 months before my clinical rotation site changed. I had to get used to each new interpreter’s style, reteach invented genetic term signs, and reteach the role of genetic counselors. I think I had a total of around 25 different interpreters the whole time I was in graduate school. I’m sure I’ve forgotten a couple here and there. Once again, several were great and very professional. As for the others…..well I’ll let you judge yourself. 😉

I’m leaving out details for confidential reasons. Am also trying to keep this as short as possible.

–I had two interpreters who refused to voice what I was saying or would say things I didn’t really say.

–A couple of my classmates overheard one interpreter telling another interpreter that he didn’t think I was capable of understanding the material.

–Two interpreters used to just start talking about random stuff or would joke when they got bored with the class discussions. It was a bit embarrassing when the instructor would look at me and wonder why I was smiling during the most inappropriate time. Also, sometimes the instructor would call on me and I would have no clue what was going on.

–Interpreters who would start their own personal conversations with patients (so unethical) and then on top of it they wouldn’t even sign what they were talking about.

–One interpreter used to answer her cell phone in the middle of interpreting. She would also interrupt me when I was trying to ask something to ask her own personal questions (once again, unethical).

–Interpreters who would leave early to beat the rush hour leaving me without an interpreter.

–I had two interpreters who were so unskilled that I actually had to interpret for them because they wanted to learn how to sign (that one still gets me).

–Another interpreter refused to voice when I asked a patient if there was any possibility that her parents were related (standard question to ask during a genetic counseling intake) because she didn’t think I knew what I was doing. Also, because she thought it was inappropriate even after I explained that it was a standard question that we were expected to ask every patient.

–Oh yes, one interpreter actually told me that she was on her period immediately after she told me her name. She even went into details about how she could feel her period coming on. She also talked about how once she wet her pants, the first time she had sex with her husband, etc.

–Another interpreter within 5 minutes of meeting her told me that this job (my clinical rotation) was the first one she had taken after she had a mental breakdown due to several incidences. One was the fact that her husband (now ex-husband) had married her only and only for a green card.

–One interpreter just couldn’t handle going with the flow. You have to be able to go with the flow when working in a busy clinical setting. She would always get upset and grouchy when something unexpected came up (i.e. new patient added onto the schedule).

–An interpreter who showed up 3-4 hours late without calling us to let us know she would be late. Turns out she had called her agency to let them know she would be late. The agency didn’t call us because she had told the agency she would only be 5 minutes late. I wasn’t thrilled that I had made the 2 hour commute there just to find out that the interpreter wasn’t there. Needless to say she wasn’t asked back.

–An interpreter who was always taking cigarette breaks. I would almost miss getting to observe sessions because she wasn’t always around when she was supposed to be.

–I sometimes write out general ideas of what we may say during a session. I did this for myself as many other students did to practice. So sometimes I would go over it with an interpreter to review terms that they may be unfamiliar with. One interpreter actually taped this “script” to the side of a filing cabinet and would read right off from it even when I told her it wasn’t exactly what I would be saying (it changes with each patient). It got to the point where I would just stop signing or sign something random to see if she was following me. She usually wasn’t and would continue to talk. That made me feel so useless, why was I even there?!

–I had to really keep my cool once when an interpreter started making jokes (using sign language only) about a patient in front of that patient!

–This one isn’t really unprofessional, but I just love it. One interpreter upon finding out I was from Kansas asked if Kansas was next to California. 🙂

Sometimes at the end of the day all I wanted to do was just bang my head against the wall after working with certain interpreters.

I could go on and on, but these are just a few examples. All I ask is for a qualified interpreter to show up on time, be willing to work as a TEAM, and to know her/his boundaries. That’s it. I would take an interpreter who was unskilled over a skilled interpreter any day if she/he was more professional.

For some reason I always end up with all these interpreter stories! One good oldie was an interpreter I had for Biology in the 9th grade. She used to just butt in on whatever I was doing (not the interpreter’s role) and take over. She would actually take my worksheets and try to write in the answers. That was just so insulting to me, because she was saying that I wasn’t capable of doing the work. I used to just grab it back before she could answer more than 2 questions, erase the answers, and redo it. Half of the time her answers were wrong anyways. Finally one day, I just sat there and watched her as she spent a lot of time filling out the whole worksheet. When she was done I took the worksheet, crumpled it into a ball, and threw it into the trashcan. I then went up to the teacher and had the interpreter voice what I was signing. I signed that I needed another worksheet because the interpreter had tried to do the work for me. She left me alone after that.

The Mermaid Girl

I’ve always loved reality and documentary sort of shows. In the 3rd grade when everyone else was watching Babs Bunny I was watching Rescue 911.

The 2 main channels I watch are TLC and DiscoveryHealth. Right now, I’m watching a show called The Mermaid Girl. I thought I would blog about it as I watch it. I’m always thinking of things while I watch those sort of shows then I forget all my thoughts immediately afterwards.

Sometimes when I watch shows about things such as “The Mermaid Girl” with people who have no background in medicine or genetics. Their first reaction tend to be one of shock, horror, or they unintentionally make inappropriate comments. As the show goes on and the more they learn about a specific condition/disorder/disease….the more accepting they seem to become. The more they start to see the person for who he/she is really is and they start to look past the condition/disorder/disease.

Education is the key to acceptance. I know that from first-hand experiences.

Anyways, back to “The Mermaid Girl.” I have to admit that the name of the show bothered me at first, because I wasn’t sure if that was what the producer decided to “label” her. After all she does have a name (Shiloh). I couldn’t help but think of the negative association between the person known as Elephant Man. It is believed now that he had a genetic condition called neurofibromatosis 1 (NF1). Maybe it’s just me but I think a person’s perspective of this man differs when he’s referred to as Elephant Man vs. a man who happened to have a genetic condition, NF1.


Anyways, after thinking about it and after Shiloh (the 8 year old girl in TLC’s The Mermaid Girl) stated that she doesn’t care if she’s called Mermaid Girl….I got to thinking that mermaids tend to be associated with being mysterious and beautiful. That maybe it is actually a positive association.

Mermaid syndrome is actually known as sirenomelia (named after siren, the Latin word for mermaid). Many do not survive to birth or past a few days after birth. Shiloh has fused legs from waist down, no rectum, no genitalia, no uterus, no bladder, quarter of kidney, and 6 inches of large intestine. She has had 150 medical procedures including 2 kidney transplants.

Shiloh’s mother broke down into tears at one point because she said she felt almost selfish for having decided to give birth to Shiloh. She knew that life would be difficult for Shiloh and places the blame on herself in some ways.

Here are some comments Shiloh made about having sirenomelia:
“Some people are same, some people are different, and some people are short. Look, I’m not even quite the same as others but people like me.”

“That’s the way I was made when I was born and it feels pretty good.”

“It doesn’t really matter what you call me, you can call me mermaid girl.”

Towards the end of the show, they discuss the possibility of separating her legs. It’s several years of surgery that may not have a positive outcome. Shiloh becomes upset at the possibility of having numerous surgeries. I’m quoting Shiloh’s mother here.
“How much do you try to fix something if in the process you lose her life?”

The narrator.
“Should she remain the worlds’ only mermaid girl or face surgery to make her like any other girl?”

This brings up the concept of embracing a “disability” as something that makes a person unique in this world where everyone tries to be like each other. Or should one try to hide their “disability” by trying to fit in and be like everyone else?

Shiloh’s parents decide to include Shiloh in the decision making process. Her parents share their concerns with her and encourage her to talk about it with Dr. Matt (who Shiloh calls Dr. Hottie). At this time, they have decided not to separate her legs. They want her to live life the way she is because that’s the only way she’s known and she’s happy with who she is.

Thoughts?

Kansas Weather

How do I know when I’m in Kansas?

When the high is 60 (degrees fahrenheits) and low is 5 degrees with windchills of -5-10 degrees F all in a span of 6 hours (dropped 29 degrees in 1 hour). Throw in 30 mph winds, sleet, and snow (more ice than snow as ususal)….and there you have it…Kansas weather in a nutshell. Brilliant.

And folks…this is why I showed up in NYC always dressing in layers. It took me a while to realize that temperatures there tend to be pretty constant throughout the day and that it wasn’t necessary to dress in multi-layers. Now that I’m back in Kansas I’m relearning the fine art of layering my clothes once again. It’s not that unusual for it to be in the 60s-70s one day with everyone hanging outside in shorts then the next day it’s in the 20s-30s and snowing.

Best Careers 2009 List and Genetic Jokes

Genetic counselor (GC) is ranked yet again as one of of the best careers.

This time it’s US News Best Careers 2009 List…

Sweet!

Now, where’s my job? 😉 I just keep telling myself that the fact that I’m still looking for a job in this field just proves how much I want to be in this field.

One of the things I like the most about GCing is that everyone has a life story and I get to hear some of those stories. It’s an amazing learning experience that challenges me to question things (maybe a bit too much at times) and not to always accept things for what they may appear to be.

Now for some genetic jokes from some random websites (a bit lame, but enjoy anyways):

Q: How do you tell the difference between a male chromosome and a female chromosome?
A: Take down their genes (jeans)! (http://www.juliantrubin.com/cloningjokes.html)

I wish I were DNA helicase, then i could unzip your genes. (http://answers.yahoo.com/question/index?qid=20080319142549AAb9Qm0)

Q: What did the football player/genetics student use to find the genotypes
possible from a particular cross after failing three times using the branching
method?
A: A “punt-it” Square. (http://www.cns.pdx.edu/~newmanl/GeneticsJokes.html)

Why are tertiary structures selfish? Because the amino acids are all wrapped up in themselves. ((http://www.cns.pdx.edu/~newmanl/GeneticsJokes.html))

What did the snooty metacentric say to the telocentric? Two arms are better than one. (http://www.cns.pdx.edu/~newmanl/GeneticsJokes.html)

How can you better understand genetics in cold weather? Put your codon! (http://www.cns.pdx.edu/~newmanl/GeneticsJokes.html)

Why did the gene crossover? To get to the non sister homologue stupid! (http://www.cns.pdx.edu/~newmanl/GeneticsJokes.html)

Q: How many zygotes does it take to screw in a light bulb?
A: 2 n’ 4 poles (http://www.cns.pdx.edu/~newmanl/GeneticsJokes.html)