More Information (HW

On 4/8/2008 1:58:53 PM

Sorry, it took a while to get this up and posted. My interviewees had to take their time, going down memory lane.

1. Interview

Dad-

1. When I was a child, you thought I had speech problems?… please explain. ….
On Mother’s Day 1988, you said your first word, “Mama.” But soon after that you stopped talking. It was around the time of mom’s huge brain tumor surgery, so we thought it might be just an emotional reaction to that situation. Over time you began to talk but unintelligibly. We joked that you had learned Gaelic from your Irish babysitter, but after a while took you to the doctor and got a referral for speech therapy. You went to speech therapy at High Point every week as a preschooler, while spending the rest of your days at Peachtree. Mom greatly enjoyed working with you on your speech therapy homework every night. Finally, in first grade they were drumming you out of speech therapy because you no longer needed it, and I asked if your hearing was OK because sometimes our phone conversations were “cross questions and crooked answers,” leading me to wonder.

2. How did you feel when you found out I was deaf in one ear? and about the NF2?

Crushed, devastated, bewildered, very emotional.

3. Growing up, did you view me any differently, because of that?

Not really, except when particular issues arose. Of course, the ripple effect from coming back to High Point for third grade with weight gain and the side of your head shaved was far reaching.

4. When the doctor told me in 2005 that I might become deaf later in my life, how did you feel? and how did I react? and what did you think?

I remained hopeful that it would be far in the future, and that medicine would advance enough to prevent that outcome before it happened. I was worried, but remained guardedly optimistic. Your reaction was total denial: “Yeah, maybe when I’m 80!” I didn’t believe we had until your 80th birthday, but I still thought we might be able to hold it off 10-20 years, allowing time for stem cell treatment or whatever to advance.

4b. Did you ever think that would happen before then?? I think it was a total shock to me.

We always knew you were at risk, but really thought it would not be at such a young age. See above.

5. After that happened, how did you feel, or what did you think about me?

Love, concern, grief, need to everything possible to help you. I was amazed at your strength and cheerfulness in facing a huge challenge.

did you think I w.as less-capable?

Generally, no. In terms of adjusting to a new reality, obviously we all had a lot to learn and I felt the need to protect you.

How did you feel about learning new ways to communicate??

It’s hard. I’ve been willing, but honestly when I don’t deal with it every day, I don’t practice every day.

5b….HOw did you feel when you first saw me after each of my surgeries?

Mushy.

6. What was your opinion when I said I wanted to transfer to school at RIT/NTID. Were you scared? happy? Tell me.

I was proud of your independence in searching out what was right for you. I still am. Almost every day some friend asks me how you’re doing. I tell them, “she’s thriving…. I don’t know where she got her stubborn streak, but thank God she has it.”

7. What was your opinion about me having a auditory brainstem implant?

I knew it was what had to be done. I had researched the options, including a new auditory midbrain implant they were experimenting with in Germany and Italy, and read everything I could find on research about regenerating nerves from stem cells. It came down to the reality that the ABI was the best thing available at the time, and delay would increase danger of facial paralysis. Once I know what has to be done, I always have a bias for action. Maybe it goes back to a poem your grandmother required me to memorize when I was about 10, which includes the line, “if you’ve got a job to do, get it done.”

What about the time between surgery and getting my ABI activated?? Explain.

I knew that there would be a delay of 6 to 8 weeks between getting the implant and turning it on. That’s just standard operating procedure. The clarity of your speech declined during that period, as we pretty well knew to expect, but it came right back to normal as soon as it was activated.

After I got ABI activated, what did or do you expect, think differently, or how do you perceive me??

It was pretty much what I expected. I perceived you as my loving daughter, with tremendous perseverance and determination, carrying on with spunk and optimism. I had heard so many stories of young people who lost their hearing and basically crawled into a shell for the first couple of years, but it seemed like you never slowed down.

8. Growing up, you told me that I can do anything, any job, any future that I desire, if I work hard enough to do that. Do you still think the same, despite my hearing loss. Please honest in all answers.

With your spirit and determination, I am confident that you will get over, under, around or through any barriers that are put in your way. That’s not to say that hearing loss may not make that harder, or might not somewhat affect the choices you make about careers, etc. But I really expect you to achieve pretty much the same types of goals that you would have achieved anyway, though you will have to work around the hearing issue.

9. Please add any other information that would be good to include!!!!

I have a mediation tomorrow for which I have to prepare, so I’m sending mom a copy of this to see what she wants to add. When is your deadline?

10. do you have any letters, photographs, observation, or information, that could be helpful in writing my memior. I need back information, as well as opinions, events, situation, and the story.

Love you!

In a separate email:
Anne,

Responding to your interview questions was an emotional trip down memory
lane. It brought back memories of a lot of tears and a lot of pride.
You are a remarkable young woman.

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From: Anne
To: Emily

Me-

Hello, I am writing memoir about growing up hearing, and becoming deaf. Yes, I already wrote something similar, but I am extending it much farther, there for need MORE INFORMATION! (see assignment below) here are some specific questions that I made for you…. Please reply after answering, as soon as you can. thanks!!!! Thanks for being such a good friend, through all of these years! I know we don’t see each other much now, but we have always been friends, ever since High Point and Brownies.

1. When you first met me, did you think that I had
speech problems? or hearing problems, for that matter? Did you think that would stop us from being friends?… please explain. ….
2. How did you feel when you found out I was deaf in one ear? and about the NF2? ….Growing up, did you view me any differently, because of that?
3. When I told you that the doctor told me in 2005 that I might become deaf later in my life, how did you feel? and how did I react? (I think I told you months later, and said that it was BS, or not true, but then it happened so soon….) What did you think?
4. Many of my friends I did not tell them that i was deaf in one ear, since I didnt want them to think I was different. But I know that you knew. Do you think people viewed me differently? …. I remember many long hours of talking on the phone to you, and whispering secrets about boys in the dark, when we had sleep overs. We grew up, i became deaf, and didnt answer the phone calls, communication became more
difficult….. How did you feel?
5. After that happened, how did you feel, or what did you think about me? did you think I was less-capable? How did you feel about learning new ways to communicate??
6. What did you think when I said I wanted to transfer to school at RIT/NTID, in New York. Tell me.
7. What was your opinion about me having a auditory brainstem implant? Do you view me differently now, than before?? if so, please explain. 8. do you have any letters, photographs, observation, or

Emily -
1. When I first met you I did not know that you had hearing or speech problems because I think that we were so young, but even if I had noticed it would not have mattered to me, we are friends either way.

2. When I found out that you were deaf in one ear, it did not change anything except the fact that I had to sit on the left side of the car when we went places haha!

3. When you told me that you may become deaf later in life, it shocked me and I think that you too bc it was so surreal! You had known that that was a possibility but when it happened so quick senior year I think it hit you like a speeding bullet. But you adjusted, you have done everything and more to accomodate, even transfering schools! I think that you are so happy at rit and you have made so many new friends and have learned so much and you have been so independent and have had the support of so many, and if people have not supported you or have not tried to understand, then those are not the people that you want or need to have around you. I also think your faith in the lord has helped you to be so strong also.
Sent via BlackBerry by AT&T
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….I sent the same questions to my mom, but she has not replied, so I went ahead and posted this.
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2. Online Research- (world events, additional information, etc.)

1996 – Atlanta Olympics
2001- 9/11
2004 – Katrina
2005 -
2006 – 2007 – I’m not sure what big stuff has been going on, other than news like about the war and presidential race, which is interesting. I guess I sorta became deaf and felt like crawling into a shell, but somehow, maybe through my running which helps with stress, my friends, my family, and my faith…. I ran, and ran, put on a happy face like a mask, ….when my heart was still aching on the inside, still feeling lost. Then i found out about RIT/NTID…. I never really knew deaf people before I came here…. Some welcomed me with open arms; some seemed to shove me out like telling me that I was NOT Deaf….. but I kept running this silent marathon (that describes life, as well as the running factor), I believe in myself, although I’m not sure how, and I wake up each and every day, ready for another step in my life.
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3. Photographs -

I have a photo somewhere of me in California. There is one of me in ICU in 1996, and another a few days later after I had moved to hospital room. I sit with my american girl doll. both of us wearing hospital gowns and head bandages. haha.
I have others of me growing up, with friends and family. there is a picture of me at Santa Monica Pier the night before surgery in 2005. There were not many pictures taken of me at that time, that i remember. I think i shoved dad with the camera away, saying “I don’t look good. Don’t take that picture.” if there are any, i’ve not seen them.
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4. Letters -

I have a box under my bed at home that is full of Get Well Cards! People wrote some nice, and some strange things. Some said they hope my disease would go away, or they hope my hearing would come back like before. Perhaps I should have kept more of the notes and letters from my own family. They have written an enormous number of notes to me since I lost my hearing. some were kind, like “I love you. I’m proud of you. You are my hero!”, while some were full page long notes about chores my mom wants me to do. I realized that I cannot hold onto all of my past, in paper form…. some of the notes brought forth tears, so i pushed them away, because I wanted to move on, get a life, not dwell on the lose. wow, this is pretty emotional to write about. Taking me down memory lane.
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5. Facts-

working on context for this part
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6. Observations

I just found a journal of things that I wrote, mostly while being consular at church camp and then off to summer school ASL classes at Gally for a month, last year, so I will read through it,and may add some things from there.