"Bad Deaf Days", "Bad Hearing Days", and Wonderful Moments When It All Fits!

Hey Everyone,

I am taking a disabilities studies class right now and it is pretty neat. I am not learning a lot of new stuff yet but the class its self is really interesting. My prof is blind and he uses blind and deaf as examples for everything. Perhaps because he can related to the world of "sensory impairment" best. [call me hearing impaired and I may kill you, same thing goes for sensory impaired. I couldn't think of another word!]. One thing he talked about was having a "Bad Blind Day" and it got me thinking about my own life.

I have "Bad Deaf Days" and "Bad Hearing Days". I was even confused about how I can have both. When I speak of having a "Bad Hearing Day" I am referring to a day when my hearing was fluctuating, or my hearing aids weren't quite doing what I wanted. This weekend for example, it was a "Bad Hearing Day" after another. On Saturday I was out with a Deaf friend of mine at a film festival and I started off with my hearing aids on. I couldn't hear much and what I could hear didn't make sense. My hearing hadn't been that bad for a while so I just took off my hearing aids and experienced the evening in silence. When I say that, please don't interpret silence to be a bad thing. I was very content in my silence. I was surrounded by people experiencing the same silence and in that particular moment the silence was far from isolating. The silence drew us closer to one another. Even though it was a "Bad Hearing Day" it was a great Deaf day!

Sunday was much like Saturday and I watched my "Bad Hearing Day" turn into a "Bad Hearing Weekend" I woke up very early to go ride (horses) and I put my hearing aids on as I was driving to the barn. My car was pretty quite so I didn't notice anything at first. I got to the barn and once I walked in I realised that I couldn't hear very much, less than normal. I left my hearing aids on, mostly so the hearing people felt safe around me on a horse, and ignored what little sounds I was hearing. I took my hearing aids off the minute I got to my car and didn't think about them again for a few hours.

Sunday afternoon I had to go to a social event/fundraiser thing. I was the only Deaf person there so I put on my hearing aids and geared up for an afternoon of speech reading (something I really haven't done in a remarkably long period of time, here and there yes but not a whole social event) as I walked into the room full of hearing people talking I was overwhelmed. There was so much sound and I didn't know what to do with it. Without even thinking I reached up and took my hearing aids off, shoved them in my purse, and went about speech reading in silence. I didn't have interpreters on Sunday, no ASL at all. None at riding, and none at the event. I was in silence on Sunday, but that day it isolated me. There was no one else experiencing the same silence. There was no one for the silence to draw me closer to. On Sunday the silence was like a repellent. Does that make Sunday a "Bad Deaf Day"? It didn't feel like a bad day. I just accepted my fate and moved through the social situation with as much ease and grace as I could. Yes - there was some smiling and nodding, but it wasn't a bad day. That got me thinking about when I have had a "Bad Deaf Day". Immediately my mind drifted back to Friday.

Friday was by far one of the worst "Bad Deaf Days" I have had. It started at school with my first tutorial for English Literature class. The room was set up in a strange way. We sat around two large tables situated in the North and South ends of the room. Along the West wall sat the TA and my interpreter. I sat on the South side of the room but I couldn't get a good sight line of my interpreter and TA at the same time. It didn't help that the TA was wondering around the room while speaking. The most interesting part of the whole setup was the fact that the TA chose to write on the chalk board on the East side of the room, even though there was a chalkboard right behind him on the West wall. Regardless of what was taking place I could not access all of the visual information I wanted, or needed.

The tutorial got me a little bummed out but I reminded myself it was just the first one and there was plenty of time for improvements. I had an hour long break before my English Literature lecture and I spent the break sitting in a cafe with my interpreter while she ate lunch and prepped for the class. I was mostly texting my friend and just trying to relax before the two hour long lecture.

The lecture time rolled around pretty quickly and my interpreter and I made our way to the class. I always dread this particular lecture because it is in a dim lit theater, on a Friday afternoon. The dim lighting means I need to concentrate much harder to understand the interpreter. I still rely on mouthing and sign to understand and because of the poor lighting I cannot speech read and I am going on sign alone. I can understand it fine but it is draining and I am already exhausted from the classes earlier in the week. The first half hour is fine, but from there it goes down hill quickly. By the end of the 2 hours I was so frustrated and drained I didn't know what else to do but cry. I can't even speech read the professor because of the lighting and distance. My only hope to understand the lecture is to use every ounce of energy I have to focus on the interpreters.

After lecture was finished on Friday I went into my car and just cried. The crying led to an asthma attack, and eventually a trip to the hospital because I couldn't get my asthma under control. That was a "Bad Deaf Day".

The "Bad Hearing Days" rarely bother me that much. I can't really hear anyway, so what difference does it make in the end. I can't understand speech, I don't rely on my hearing, so not hearing isn't a big deal. The "Bad Deaf Days" are the hard ones for me to cope with. Those are the days when I go to bed thinking "I wish I wasn't d/Deaf", "I wish I didn't rely on interpreters", "I wonder if a cochlear implant would have been able to help me today".

Then, I wake up the next day and while I remember the day before I also think of the day ahead. There is always something to excite me about the day ahead. Maybe I am working with my favorite client, or I have one of my favorite interpreters for class. Maybe I am going out with one of my Deaf friends, or I am going horseback riding. In the end there is always something positive that replaced my "Bad Deaf Days". There is always a moment when I am learning a new sign, or understanding more in a conversation with a new person than ever before.

I remember sitting with a group of Deaf people in a restaurant on Saturday night and just observing. Occasionally I would jump into the conversation, but for the most part I was just taking it all in. Watching this vibrant community come together and come alive before my eyes. No one in that group knew everyone there before that evening. Everyone knew one or two of the people, some knew more than that, but there was one common element that brought us together. Deafness. This quality that I felt excluded me and frustrated me to point of tears the day before was now drawing us all together.

It is very hard to explain that feeling that I had on Saturday night. Overwhelming may be a good way to describe the emotions of that evening for me. I have spent the last three weeks fighting for acknowledgment of my identity and respect for who I am from my hearing peers at the University of Toronto and in that one moment all of those defences I had built up melted away. I forgot about the day before and frustrations.

Now I am left with a two options. I can either measure my life in "Bad Deaf Days" or I can choose to focus on those moments when everything just seems right. Those moments when it feels like the puzzle is complete. While it is easy to dwell on the negative experience I have encountered in my d/Deaf world but that is not how I want to live my life. I would much rather focus on those amazing days, those overwhelming days when everything fits so well I don't know what to do with myself.

One also must acknowledge that without the "Bad Deaf Days" the great ones would never exist. So what if I need to cry alone in my car to the point where I cause myself to have a severe asthma attack? I think we all need those "asthma attacks" every once and a while to remember to be thankful for the good.

Have a good night!

Jenny

Hey everyone,

On Thursday I went to my audiologists but this appointment was a little different. This time there was a second audiologist there and she was a cochlear implant audiologist.

I had asked my audiologist about talking to a cochlear implant audiologist and she said that an audiologist with her company used to work in a an adult cochlear implant program. She called her and arranged an appointment for her to talk to me. I was skeptical going into it. I have been flip-flopping when it comes to looking into it for quite some time.

She started by telling me about implants, and that was okay. I knew a lot of that stuff before anyway. I don't know if I really learned anything new at the appointment actually. I don't even think I am any farther ahead in my decision now than I was before. It sucks.

I found the audiologist to be a bit disrespectful. She didn't respect the fact that I use ASL, and brushed it off like a non-issue. She seemed to think I didn't want to be using ASL, or associating with Deaf culture. She said I can tell you live mostly with hearing people, and when I said that I didn't so much anymore she said something along of the lines of "Oh, well that's not what you want". Who is she to tell me what I want!

She talked about how my quality of life will improve, how my life will be easier, how many more opportunities I would have. See, the thing is I don't think the quality of my life is poor, I don't think my life is hard, and I think I have every opportunity. Even my audiologist said that she doesn't think I have anywhere to go but up.

I don't need a cochlear implant and that is what is making this that much harder. I can do everything that I want to without one. If I decide to persue a CI it would be because I want it. I still can't see it as something that I want. Maybe sometimes I want it, but not even close to everyday. I may wake up thinking "If I could hear more..." once a week at most. I think it would have to be everyday, or pretty darn close, for me to say it is something that I really want.

I don't know what I want! Is that okay? Can I just not know for a while? Please!

Jenny

Hi Everyone,

This post has a bit of a different vibe than the ones that preceed it. Today I have decided to talk about choices. Not just in my hearing but in my life.

I am currently at my parents house and I have been for 5 days now. Tomorrow I will be going back to Toronto and my Frosh Week at University of Toronto starts on Tuesday. One thing that I have been thinking about a lot lately is why did I choose U of T? Why did I choose Toronto? Why did I choose anything that I have chosen.

I find it kind of funny because I am a planner, I like to know everything that is happening well in advance. However, when it comes to decision making I always go by my gut instinct. I am always right and it has always worked for me in the past. Now I am starting to doubt myself. Is University of Toronto really the right place for me? I chose it because of the amount of options I have there, and it's location. I am also the only deaf undergrad there. If I had gone to York I would have had a thriving Deaf/HOH community and an amplitude of supports. For some reason though, I chose U of T.

Cochlear implants. That is another choice I made. I decided not to go through with it, not even the testing to establish my candidacy. I chose that because music is so important to me and I need to be able to distinguish tones that are very close together. I have been told that is not possible with a CI. This past week I was out with some friends and the frustration of being with a large group was over whelming. I couldn't handle it and I did not know what to do - so I left. I am also thinking ahead to tomorrow morning when I have a riding lesson. I know I am not going to get anything out of it, but it makes my coach happy to see me riding around the ring for an hour. I have avoided having a lesson for a few months but I promised her I would while I was home this week. Last time I had a lesson I was able to follow along and understand her very well using my FM system but now I can't. I am not sure what I am going to do, or how it is going to work. Then again, how do I know a cochlear implant would enable me to do those things?

My choice to stay in Toronto, now I don't think I regret that one. I love the city and I thrive there. For the first time I am in charge of my life. I am in charge of my medical care - and believe me that is a bigger deal than it may seem. I have a wonderful audiologist, and some decent doctors. Should that really be my motivation for staying in a city? I think part of my motivation is my sheer determination to prove my independence and my ability to function as an adult. To prove that I no longer need someone to take care of me. To prove that even though I am deaf I can lead a completely normal, full, adult life.

Really, who is to say if my choices were the right ones? I have been thinking a lot, about all of these choices, and I think that more reflection and research is required on almost all of them. I think now is the time to embark on that next portion of this journey. Now begins my time of reflection.

Jenny

Hey all!

I go tomorrow for my music adjustments! I am so excited! I am hoping to be able to sing in a choir again. Ambitious goal, I know, but I can do it. I know I can do it. I need to sleep but I am too busy thinking! AHhh!

I do need to sleep though, I have a meeting at 9. Boo!

Night!

Jenny

Hey all,

I have decided the Naidas are little intelligent beings, capable of abstract thought, that have been taught by Phonak to spite their users.

The left aid has started cycling through the programs. No reason at all. I will just be talking to someone and then it beeping at me and going rapid fire through the programs, or it will just go to the first program (which is t-coil...). I went to my audiologists office tonight and she tried a few things -cleaning the aid, and changing the mic covers. When she listened the aid she said it sounded staticy and seemed to think that was wrong. They always sound staticy to me and I just assumed it was my ears.

I am going on Monday to do some adjustment with my music program to see if I can sing again. I am kind of excited. I will write about that after it happens. We have a follow up appointment booked for next Wednesday as well to make any other adjustments I want after applying Mondays to the real world. I don't need much time to adjust to know what I want to have changed.

I was thinking today and there was something I really wanted to blog about and now I absolutly cannot remember. Hmm...maybe it will come to me later. Until then I am sleeping!

Good night!

Jenny

More hearing aid pictures!

Hey all,

I decorated the hearing aids to match my shirt. I thought they were pretty exciting looking so I took some pictures...






































Above is one of the pain causing pink earmolds, I don't like it.

edit: I am allergic to the earmolds. I have been having progressivly faster and worse reactions since I got them on Thursday. Today I reacted to the extent that my ears swelled shut around them and they were really hard to get out. They make my ears swell, red, itchy, and sore. I had to got to the hospital and be given meds to stop the reaction the last time. I hate my body, and it seems to hate me. I am allergic to everything...

That is all for now!

Jenny

Trip home...

Hey all,

I went home for the weekend because there was a family BBQ. I tried to get out of it but in the end I was sucked in. See, I hate family gatherings and for many reasons. I am so different from my family in every way that there is no way that I can socialize with them. We just have that few of things in common. I am also the only D/deaf person in my family. A few of my family members know some basic basic basic sign, but nothing beyond the alphabet and counting to 10. Basically I am expected to socialize with people who don't try to adapt themselves to me at all. I am forced into a group of people and made to speech read. Speech reading is hard enough with a small group of 3-4 people. Last night there were well over 10 people here and it was horrible for me. I couldn't follow conversations, I had no idea who was talking when, and I was just lost. On occasion someone would see me looking confused, summarize the conversation and then continue the conversation in the same matter that it was before.

I snuck away right after dinner and went out to a movie with my friend. She is learning ASL and I made her not speak and only sign for well over an hour. It was great. It was hard for her but I think she learned more doing that than she has ever learned before. I told her stories in ASL, and taught her a bunch of new signs. By the end we were making our way through a decent conversation. I was asking her questions and she was responding appropriatly. I was pretty impressed by her really!

That same friend is coming to Toronto at the end of August to help me and my audiologist with some hearing aid adjustments. We are going to see what we can do to make my hearing aids better for me to sing with and understand music. My friend is also a musician so she is going to help and see if I can sing with her. I have already told her that at all times, aside from when we are with my audiologist, she is not allowed to speak. We are only going to sign. I have a feeling she is frantically studying her ASL dictionary as we speak! LOL.

In other news, I think I may be allergic to the new earmolds. I can tolerate them in my ears for less and less time before needing to take them out. I am not taking them out because of the sound, but because I am so conciouse that there is something in my ear. Sometimes my ears get itchy, other times the molds just feel really really tight. I mentioned the tightness to my audiologist in an email and she suggested that it may be an allergic reaction. She told me to use my old molds for the time being but I didn't bring them home with me. I go back tomorrow though and will switch them as soon as I get back! I am only wearing them when I need them right now, like when I am out with hearing people. Speaking of that I am going out with a few friends in 15 minutes so I should probably stop writing and go get ready!

I will update later!

Jenny