Stuck in Limbo

[Porter]

Where to begin?

I have had moderate/severe hearing loss pretty much since I was 3 years old. I started wearing hearing aids when I was in elementary school. Growing up, my parents were very careful to raise me in a hearing-only world. Let me tell you- it worked alright. I was constantly adapting-wearing my long hair down so no one could see I was different. I would come up with excuses not to attended movie theaters, beaches or watch TV shows with my friends. At home, I would sneak on the captions and I would take my hearing aids out and enjoy the break of silence. I have never met anyone else like me. Sure, I have met "old folks" with hearing loss, but I have never met an individual like me.
Don't ask me how I did it- but I survived college and became a nurse- it took a lot of adapting- but with it being mandatory, for the first time in my life I had to wear my hair up for clinicals and display to the world who I was. People had their snide comments, but I didn't think about them, I thought about my son and providing for him. So, now here I am at 28. I have finally become proud of who I am. But how do I find other people in this life who understand my world? I am not hearing enough for the hearing world and I am not deaf enough for the deaf world. I am stuck in LIMBO. I don't even know ASL- but I have been studying for it! I am so grateful that Switched at Birth has shed some light on the deaf culture- because of that show- the hearing world is gaining insight and it is becoming the social norm. Suddenly being deaf is the "cool" thing to be. Yet, I still find myself hiding- I am back in college to get my Bachelors of Science in Biology. I always wore my hair down, because ignorant people take my deafness for having a decreased level of intelligence. Or when they find out I am deaf all they start repeating over and over "did ya hear me? did ya catch that?" and they focus on my disability more than me. I want to focus on learning, not having to deal with people's ignorance on a daily basis. The fix? Hide it. What a twisted world we live in. I got to break free- I need to learn in this life to embrace who I am. But it's difficult when I am all alone in this world. So I start here. I just want to finally meet people in my world.....

 

[midnytexvz]

Almost same story. .. im just a guy and a little older. I know how you feel... even my counselors are lost...im in between. Sucks to not have a place in the world. Oh and crongrats on the nclex im not a nurse but my partner is and I had to make it thru all that as well. Nclex took 3 shots lol

 

[JadeSkye]

Welcome. I can't say that I know how you feel because I am hearing. I am on here because we just found out our three year old daughter has moderate/severe hearing loss. I am sorry that you feel you are in a "limbo" right now, but I can say that I understand that feeling to an extent. When our daughter's hearing loss was confirmed last month, that was my first feeling- that she was in a sort of "limbo" place, not hearing and not completely deaf either... I am hoping to save her from some of that feeling by offering her both the hearing and Deaf world so she will be able to choose as she gets older where she feels most comfortable (or at least be able to move between both worlds if she chooses). I am sorry that your parents did not show you both worlds, although as a parent myself I know that was probably a hard choice for them and they must have made the choice they felt would be best for you. I hope you are able to find some answers here and I will say this place has definitely been a help to me. If you are interested in becoming involved with the Deaf community more I would suggest looking for groups in your local area as well- I am in the process of doing that myself because I know that that is the best way to learn the culture and to become better with ASL (we are learning, but it is a slow process, especially when we know basically no one who is d/hh).

 

[Karey]

I love you story! I am fully deaf, I know little/some sign language. It has been hard. KEEP GOING.

 

[Sarfarigirl2011]

Love your story!!! And I'm also moderate-severe too. (severe loss is on my right)

 

[Porter]

If you are actively researching your daughter's "disability" and gaining insight on it then you are already doing a great job as a parent. The worst thing someone can do is ignore a situation. I think you learning ASL is a great tool that will be extremely effective in the future. Let me shed some light on things people generally don't think about.

When I first wake up in the morning my ears ring louder then usual. My guess is she has sensorineural hearing loss, tinnitus is usually associated with it(ringing in the ears like after you leave a concert). You become used to it so when asked if she hears this she probably thinks it's a part of natural hearing and doesn't realize this. Well, in the morning it gets worse so I leave my hearing aids out for an hour or two to adjust. If you could just sign to your daughter when she has then out makes life 1,000,000 times better. ASL: Want eggs or bacon?

When I go to the pool or beach I have to take my hearing aids out(they can't be near water or under the hot sun- so I just leave them in the car). I am pretty deaf. I hear things, I hear voices but I can't make out what they are saying(Charlie Brown). It gets lonely. Everyone around me chatting up and me not having a clue what is going on past body language. Would be nice to have my friends or family quickly sign to me in ASL "Hey, grabbing a soda want one?, Where's the tanning lotion?, Your friend wants to know if you want to go into the water, Hey! Swim over here" things like that.....So being able to let your daughter relax on the beach and not be alarmed with whats going on around her....you're doing a great job.

When she gets out of the shower, she will keep her hearing aids out until her ears dry (this keeps hearing aids in tip top shape) so ASL comes in handy.

But above all else wouldn't it be nice to relay secret messages to each other in front of people

Captions on TV is a huge life saver as many deaf or HOH folks say. Most say they didn't learn social skills until the great ol' captions back in the early 90s. I know I LOVED it! It helped me structure my sentences and I was an expert speller! Books, too. LOVE Books....because I don't miss out on anything, I don't have to struggle to keep up.

I am thankful we now live in the age of texting and webcam(for lipreading) I didn't have that until my early 20s so it was a gold find!

So basically ASL and captions and just listening to your daughter frustrations and she will never feel stuck in limbo or alone. You giving her options is the smartest tool you can give her. She is going to love having skills to dip back and forth in both worlds. This also opens so many doors for her career oneday. I know if I had known ASL then for the colleges classes I had where my professors mumbled or turned their backs often I could have really benefited having an interpreter. But don't fret! I LOVE technology don't you? Now our hearing aids bluetooth to TV, Cellphones, radios, and yes even stethoscopes ) In highschool I even had some of my teachers wear a small necklace and all I hear was their voice in my hearing aids with a flip of the button. There's many great resources. Gallaudet University in DC is the largest college in the nation with deaf/HOH people. The whole area around there is just a community of deaf/hoh people. Dense cities like NY and Miami is filled with entire communities of deafies and hoh. But you get to where I am(living in the country) and that's where people like me tend to feel so isolated.

I know you will do great with your daughter. Your eagerness to understand it is all it takes and you have already proved that. I wished my mom did that- but I hope I can give you some info to take with you and I wish you all the best of luck!!- Porter