Last night was my meeting with Debbie Lawrence, the instructor of our Easy Signing class that several of us took last year. She and I have stayed in touch. We are teacher and student but have also become friends. When I updated her about the latest changes in my hearing and asked for suggestions about spending time with more people who are proficient at signing, she offered to meet with me and work with me one on one. I certainly wasn’t expecting that, but I can’t tell you how much I appreciated it.

We met in a hotel lobby last night that was centrally located (about a 40 min. drive for each of us!) and we ended up spending over 3 1/2 hours together! We chatted and caught up, we talked about various challenges I have come across and possible solutions, we went over some new vocabulary, we signed to each other during much of the time and we discussed getting together again next week and what I could be working on before then! All in all, it was lots of fun, very encouraging, great practice, and very practical!

Debbie mentioned to me that she noticed that my voice is changing. Chet also mentioned that to me. I appreciate honest (but kind) input about those types of things because if I know they are happening, then I can try to find ways to work on it. I always ask people to let me know if the volume of my voice is too loud or too soft, so I can learn what “normal” volume feels like. Debbie gave me some tips about how to enunciate my words and where in my chest/throat to try to project from so that my voice will continue to sound as normal as possible. I thought that was really good feedback and information for me.

She also talked to me about some possible solutions to being startled when people come home each day. Since I don’t hear any of the usual sounds of the door opening or someone walking around upstairs or even calling out a greeting, it often startles me to be home alone and then suddenly there is someone standing right next to me or touching my shoulder to let me know they are there! They have tried ringing the doorbell a time or two, which does flash lights and alert me that the doorbell rang, but I don’t really want that to be the signal, because then I feel like I need to see if someone is at the door and I need to answer it. I could also see starting to ignore that if it’s just letting me know someone is home, and then not answering the door sometime when there is a visitor there. Anyhow, Debbie suggested having them flash the light in the entryway when they walk in. Because my back is usually to that area in the evenings, it might get my attention and it might not. We’ll have to see. She also suggested having them stomp in the entry. I might be able to feel the vibrations. Another suggestion was that even if I still was unaware, walking up to me from behind, but to the side and without touching me, is less startling. I am likely to see the movement from my peripheral vision and maybe have a little heads up.

Another situation we discussed is closed doors. I was at someone’s house this week who has a crawling infant and the bathroom door was shut. I didn’t know if it was shut to keep the baby from going in there or if someone was in there. Even if I knock, I can’t hear any response, so it doesn’t help. In that situation I’m probably just going to have to look around and see if anyone if missing. If so, I may have to ask about it. A possible solution could be for people to know that if they are in there they should lock the door and then if I try and it’s locked I’ll know it’s occupied. Another closed-door scenario has been Cody’s room. There are days he is in his room studying and has the door shut. I’ve needed to ask him a question, but again, if I knock, I can’t hear the reply. I’ve been kind of very slowly letting myself in so that he had time to shut the door before I saw anything if he was changing clothes or something, but that’s obviously not a great solution. Debbie had a good suggestion for that, too. She said that we can come up with whatever code we want to, but one she knows of would be that everyone in our household knows that if I knock on a door I am going to need to open it a foot or so but that I won’t look in. Cody (or whoever) could have some socks or something that they could throw or roll over by the door. When I see that, then I know they are giving me permission to enter. Pretty slick! I don’t think I would have thought of that!

I shared with her a lot of the things that I now am starting to see and understand differently than I did before. One is how much difference being animated when you use sign language really does make. Already, I can see how much that brightens up conversations and makes things more interesting. It does get boring/monotonous when you hear nothing and I can easily see how the number stories and letter stories we learned many deaf people enjoy would be fun and are something that a deaf person can fully participate in! Anything that adds a little fun and “color” really brightens up the day.

One thing I realized last night after our meeting was that I’ve been pretty focused on coming up with ways to make the things I’m used to doing work for me now. That’s good and needed. I also realized that maybe it’s time to be thinking about completely different and new activities that we can do together with family and friends that are of a nature that I can fully participate in, too, without all the extra effort. Chet and I were talking about that today. There are games like Guesstures and Pictionary that would be easy or good old-fashioned charades. I’m sure we’ll think of other ideas, but that is a slight shift in my thought process. I think it’s a good direction to be headed in.

Overall, my meeting with Debbie did me a world of good. I’m so thankful to have her for a friend and to have her as an advocate during such a major transition in our lives. She is taking time out of her very very busy schedule (she works full-time, plus teaches multiple ASL classes in the evenings) to help me and be there for me and I appreciate it!

I’m a thankful lady today!

Today I feel like I’m back in college and cramming for a big exam!  I’ve been trying to review my ASL over the last few weeks and have done some, but tonight is my meeting with my former instructor, Debbie, and I want to review as much as I can.  I have spent most of the day cramming as much review into my brain as possible!   It’s actually going pretty well.  I’m not saying I have it all down pat, but I am remembering what we’ve learned and it’s staying with me fairly well.  I’m really looking forward to getting together with her tonight and having the chance to actually converse.  There are so many aspects of conversation that I need to learn and work on.  It will come.  I’m really enjoying learning a new language and I’ve never had a more practical reason to do so than now!  I suspect I will pick it up fairly rapidly.  I hope so, anyways.  Hopefully as I learn I can pass the info along to the rest of my family and close friends and it will soon become a simple and effective way we can communicate at least part of the time. 

Last night we had a ladies class at our house and it was my turn to do the lesson.  I taught my first class as a deaf person and it actually went pretty well.  I couldn’t hear any comments or input from others, but I was expecting that, so it was fine.  I can still speak pretty normally (I joke that it’s now ideal – I can talk all day but can’t hear what anyone else says!) and I always ask people in the audience to help me by giving me honest feedback about the volume of my voice, etc.  If I know I’m being too loud or soft, then I can learn how to adjust to the proper volume.  It really helps me to get that feedback.  I’m so glad I have people I can trust to help me out with that.  I wish I could have communicated better during the fellowship part of things.  I was able to participate to some extent and it was great.  Maybe I will find more solutions to those types of situations.  Overall, it went well and I was so encouraged by spending time with some of my christian sisters.  Several had small babies with them and I got to hold all but one!  That was really fun, too.  I’ve realized that my home is the perfect one for kids to bring their noisiest toys to now because it doesn’t bother me at all! 🙂

I got a notice that my new tablet is on its’ way!  Should arrive on Monday.  I’m really excited about that.  It means we can get the voice to text software up and running for church and if it all goes according to plan, it should also work in any situation where there is a wifi connection.  That means that even at flock groups or ladies events in a home, in theory, if the home has wifi I should be able to get captions on some of the speaking.  Not sure how well it will work in environments where several are speaking at once, but if people are speaking one at a time, like in a class situation, it seems like it should work.  Can’t wait to try it out!

I have to say that I am seeing every day how much knowing and using ASL is going to help me and my family in our daily lives.  I know that there is likely to come a point when I will have some ability to hear/understand more than I can right now.  That may be months away.  I really don’t know.  It’s possible that there won’t be any improvement, but it would be so helpful right now if I could communicate better with it.  I can also see that down the road, no matter what happens with my ability to hear and function I am always going to be a part of two worlds – the deaf/hard of hearing one and the hearing one.  Even if I end up with the cochlear implants and I turn out to be one of the people that does extremely well with them, I think ASL will still be an important part of my life.  There will always be times or moments when I would take off the external part of the cochlear implants and knowing ASL would help me personally; but because I now am also a part of the deaf world, I will want a way to communicate with others who are deaf or hard of hearing, regardless of the outcome for me.  My eyes have been opened to a whole part of our society that I never really noticed before and I don’t ever want to go back.  I want to do what I can to engage with others who face these challenges and make their (and my) world just a little easier and brighter. 

Yesterday I was able to accomplish some business that I needed to take care of. I spent quite a bit of time working on booking some flights for my daughter and I and I did the majority online. I got to the point on her reservation where you click the final thing and it’s done and I got an error message that said I had to call. I dread business calls a little bit just because of the captioning and there can be some confusion passing information back and forth. I took a deep breath and made my call. I explained to the person that I’m deaf and using a captioning telephone and that there would be a delay from the time they speak until I see what they said and can respond, so I’d appreciate your patience working with me on this…..blah, blah, blah. Most people are very willing to work with me and I always make sure to repeat back any important info so there’s no chance of a mistake in the captions or a misunderstanding. It took quite a bit of time, but we finally got the reservation sorted out and I was a little frazzled, but felt good about the success.

The next call I needed to make didn’t go so well. I was trying to call a restaurant to reserve a room for my son and his bride-to-be’s rehearsal dinner. I tried 3 times (during a non-busy time of day) and they hung up on me all 3 times! Frustrating to say the least! I don’t know if they didn’t listen to me and just thought it was a telemarketing call or if there was too long of a delay from when I was aware the phone had been answered until I spoke. Whatever happened, I would see captions saying that someone answered, then start my spiel about the captioning phone. After I finished speaking it would say, “tone…..(recording)…..if you’d like to make a call, please hang up…..” I guess it’s bound to happen sometimes. Luckily Chet was home and he ended up making the call and taking care of the reservation. At least I’m out there trying!

My former ASL instructor, Debbie, told me that she would like to/be willing to meet with me to work on some ASL together! I’m really excited about that. We plan to meet on Friday. Better get some reviewing done before then!

A friend sent me a text message a week or two ago with an interesting observation. I have always been a person that is fascinated by and loves studying foreign languages. I was a Spanish major in college and got a minor in French. I took some Italian as well. She told me that she thought it was interesting that the thing that has happened in my life is related to learning a new language (ASL). She suspects that might not be a coincidence. I wonder if she’s right. Could be. It really is amazing how God works sometimes.

I was excited yesterday because I got to sing in church and it went well! I hadn’t tried since the latest episode – there’s just been too much to adjust to and figure out, but yesterday I was up for it and I was thrilled that it went well. Chet helped me out – I started singing and he gave me a nod if my volume was okay and if I was close to being on tune! I needed a lot of reassurance because it is so out there (think about how people sound when they have headphones on and can’t hear themselves!) but it felt so good to participate in that part of our assembly again.

I also made a discovery. I’ve been using two of the church’s assistive listening devices and holding them tight on my ears to try to hear anything being said at the microphone. Yesterday I borrowed a set of earbuds from Cody to try and it worked! I didn’t have to hold my ears, and I was actually able to understand pretty much all of what was said! I don’t really get it – my hearing on that side has been stable for years – it didn’t improve. That’s the same ear that the audiologist deemed “unaidable” before. It’s giving me some ability to hear, so I’m grateful.

I ordered my computer for the captioning program – should be here in a couple of weeks. Lots happening! Meanwhile, I continue to research cochlear implants. I joined an online community of users so I could get some firsthand info from people who have them. It’s been interesting so far. I feel like my expectations will be reasonable if/when the time comes for me. I also emailed my ASL instructor and she offered to get together with me a few times to practice ASL and I am very excited about that. It is becoming a big part of my life and is really helpful when trying to communicate. It is great to practice with all of the others who took the classes but I also feel I would benefit greatly from being around people who are proficient at ASL and can correct me and I can learn more patterns, vocab, etc from.

I’m still feeling very upbeat and positive about things!

I know how very fortunate and blessed I am to have so many people in my life who are kind, patient, and willing to make the effort to communicate with me. I know that everyone who is deaf or hard-of-hearing does not have that and I can only imagine how hard that must be. Yesterday, I got a very small taste of what the other side of deafness can be like.

The staff at the ENT clinic where I go is wonderful. They are also very kind and patient and the doctor and nurse both have been typing their part of our conversations on a computer so that I can understand what we are discussing. The nurse has gone with me to the appointment desk to help make sure everything is scheduled correctly and there are no misunderstandings. I am very grateful for their efforts. It is a teaching hospital (part of the University of Minnesota) so there are always students and doctors in various stages of training who are a part of my care. Yesterday when it was time to go back to the exam room and “check in” with the initial staff, I had my first negative experience. I’m pretty sure this woman was brand new and likely in training. She was walking ahead of me as we moved from the lobby to the exam room. I caught a few glimpses of her face as we walked and could see that she was talking. AFter we got to the room I told her that I could tell she was talking but that I couldn’t hear what she was saying. I was polite and friendly about it – just letting her know. Her response was a brief “I know.” No apology, no humor, no smile, just “whatever.” Then she sat down at the computer. I’ve done this routine quite a few times so I know that typically they confirm my name and birthdate, ask why I am there, if I’m in pain, go over my list of meds and supplements, then confirm my pharmacy of choice. At that point, I am “officially” checked in and ready for the doctor. This woman just “dug in” on the computer and started zipping through screens really fast. At one point I saw her click on my name, then she asked me one question. When I didn’t understand her, she didn’t try again, she just turned to Chet and from that point on she completely ignored me and spoke only to my husband. I guess in a way I get that, but it doesn’t feel good. It’s like you are completely irrelevant there. Invisible. A child to be talked “over.” She finally addressed me on the pain question. She did not ask about my med list. I guess she asked the rest of Chet. I really don’t know. It wouldn’t have been hard to work with me on those things. Just a simple matter of pointing to the screen and facing me with the question so I can lip read. Next she showed me the pharmacy and it was not the correct one. She started to change it, but I told her that something was wrong – that info should not be coming up on me – I have been there many times over the past weeks and the info has not changed. Turned out that she was in the wrong patient’s chart! She was zooming through doing her thing and inputting my stuff on someone else’s chart! I felt like it was a good thing I was paying attention.

My point in sharing this story is just that I had my first experience with being completely ignored and “talked over” as a deaf person. I realize this was a very minor incidence and not a big deal. This girl was new, young and just didn’t know any better. To be honest, I have been that person, too. I can’t say that I had ever really given any thought to that aspect of things before I experienced being hard-of-hearing and now deaf. I’m sharing this now, because even though it was a very minor incident, it made me realize that this is something that deaf and hard-of-hearing people face all of the time. This wasn’t a social situation. It was a medical one. I’m sure this is true in all sorts of business situations and other ones where you actually are trying to take care of the things in life that need doing. I can see how very frustrating it must be on a regular basis for so many. Again, I know this was a minor thing but I got the tiniest glimpse of what it must be like to be treated like a handicapped person. I was sitting there perfectly capable of answering the questions for myself and only needed a slight effort to allow me to communicate. What would have happened if the doctor had not been willing to type and work with me to overcome that barrier? I had questions about the surgery we discussed. I had things that needed to be asked and said. I repeated what I understood him to say to make sure that I heard correctly and that we were on the same page. It took a little extra time but was very doable and effective. What about the deaf people out there who do not have people willing to work with them?

How wrapped up in our own worlds do we get sometimes? It’s very easy to be focused on the task at hand. This woman needed to slow down and consider the situation. Is what we are doing so important that we can’t take a few extra minutes to work with someone who needs a little extra effort? The smallest amount of kindness and consideration makes such a difference! So many people have some sort of handicap, challenge, obstacle to overcome. That doesn’t mean they are not every bit as smart and capable as anyone else. I have lived in the world as someone who is hearing for most of my life. My hearing issues are recent. I am only now facing obstacles that those who have been deaf or hard-of-hearing for all or much of their lives have probably faced from the beginning. I can’t even imagine how being ignored or talked down to would time after time would affect your self-image and your self-confidence and your perception of the world and your place in it. I can’t imagine how frustrating it would be to deal with that day in and day out, knowing you are perfectly capable and how only a small effort on the part of the other person could make it all so simple. It would be easy to be angry. It would be easy to feel sorry for yourself. It would be easy to feel entitled for all the “wrongs” you suffered. It would be easy to stop being polite or kind yourself. Once again, thank God we have the scriptures to guide us and show us how He expects us to treat others, whether we are the ones being mistreated or whether we are the ones interacting with someone who is dealing with challenges in their daily life. I don’t pretend to fully understand how someone who has dealt with these things all of their lives feels. I am learning to be more sensitive. I have realized that I need to be more understanding and patient if I’m around a deaf person and sense anger or frustration on their part. It’s really just about forgetting about ourselves for a moment and trying to see things through the eyes of another. It’s true that some people face challenges that are not easily worked around, but some are quite simple. We need to learn to be more sensitive to the needs of others. That moment of being treated like a person who has just as much to contribute as anyone else, whose opinion is just as valuable, whose needs are equally important is priceless. That’s because they ARE just as valuable, and equally important. I’m thankful for this little glimpse. It is teaching me. It’s another blessing in my situation.

Today was the day that I was scheduled for my 3rd and final steroid injection into my eardrum. This is part of trying to recover any hearing that might be recoverable and is done in conjunction with a course of high dose oral prednisone. Prior to this morning, I would have said that I have noticed a slight improvement from where my hearing was at its worst. Not enough to make a big difference in my life, but enough that I could tell someone was speaking on my captioning telephone – couldn’t understand it, but could tell there was intermittent sound. I could not hear anything at all at its worst. This morning while I was having coffee with Chet I noticed that my own voice became much softer to me. There was no doubt in my mind that my hearing got quieter.

When I got to the clinic and the doctor asked if I noticed any changes, we decided that this morning’s events were a clear indication that the treatment isn’t working. There was no reason to have the shot today. We decided that the next step is to proceed with the evaluation for cochlear implants. I have been praying that God would make it obvious to me what direction I need to go with this and I believe that this morning was an answer to that prayer. It was pretty easy to see that the next logical step is the implants. I called my insurance company yesterday and found out that they do cover cochlear implants and that they will cover having one for both ears! I was very excited about that! All indications are that I will be an excellent candidate for this and although it is not a cure, the odds are extremely high that I will do well and enjoy some kind of improvement from where I am now with my hearing and function in daily life. I also get to taper off the steroids! Soooo happy about that. This time it’s a quick taper and I should be done with them by next weekend! I’m feeling really good about things right now.

The next step is for me to have the cochlear implant evaluation with the audiology department. My big appointment day is April 17. I have a hearing test at 10am (my hearing has to be at or below a certain level to qualify) and then a meeting with my doctor at 11am. Then I have the implant evaluation with the audiology department at 1pm. I think there is testing involved in that and lots of discussion and other evaluation. The next step after that, if I’m eligible, is to get everything sent off to the insurance company for approval and details about the financial aspect of it. After that all clears, we will schedule surgery. The doctor said that it is typical for it to take 2 or 3 months from this point to reach the scheduling stage, so he would guess surgery would likely fall sometime in June or July. After surgery, there is a 3-4 week period of time for healing of the surgical sites before they can activate the implants and begin fine tuning and training. It takes months after the implants are activated for things to be functioning at maximum benefit. There are many individual adjustments to be made and some have to be done gradually – your brain has to learn how to recognize a different type of input as sound and figure out how to process it. There are training exercises involved in helping you become better at understanding and interpreting what you hear. It’s quite a process, but fascinating, and for someone in my situation there’s really nothing to lose by trying. The odds are great that I will receive some benefit and it’s possible I’ll be hearing better than I have in years!!!!! I’m feeling very thankful and optimistic today! It was a good day.

Yesterday was a nice day. My hubby had the entire day off work which is pretty rare (he works two jobs, so we grab whatever time together we can!). It was just nice to spend some time together and feel like we had a chance to reconnect. The communication barrier is there, but we are working around it. He was out-of-town when this hearing loss episode occurred, then right back to work the day after he got home, and I was so sick last week we really haven’t had much chance to just be together. It did us both good, I think. A lot has happened in the past couple of weeks.

We had a family dinner with our kids on Tuesday night. It made me think about the fact that I will continue to need to make choices during this adjustment process. My family and friends have been so patient and kind and wonderful working on communicating with me. A family dinner is a perfect example of how our lives will be different in spite of that. There was a lot of conversation that I was not a part of. This is an unavoidable part of this situation. We all worked together and I was definitely a part of the gathering, but there were also long periods of time when I was in the background and there, but not a participant. I expect this now, but didn’t really realize just how long those time periods would/could be. I was tempted to get on my cell phone and play games or check Facebook. I know those are acceptable things to do – it does get a little boring just watching people talk and having it all on “mute.” I may have to think about it more, but I decided for that night that it would be very easy for me to slip into the mode of being there, but not really being there and I don’t want to do that, so I put my phone down. It also made me think about the fact that I may need to make some choices during these situations – not just family gatherings, but any social situations – and make sure that I interject myself into things at least some of the time. I can see it being very easy for people to forget about me – I totally understand that. I don’t want the attention to always be on me either – I really don’t. I’m one of several members of the group, and it shouldn’t be any more about me than anyone else. Sometimes it’s nice to step back and give my brain a little rest from all of the effort it takes to communicate. I can just see how very easy it could be for me to move from being an interactive participating member of the family (or group) to not being one at all. I really don’t want that to happen and I know no one else does either. It is something that I think could easily happen unless I/we actively work at making sure it doesn’t. Maybe that will only be for a short time, and then once we’ve adjusted to our new norm it will naturally be whatever we’ve chosen to make it. I don’t want to become a peripheral family member. I don’t want to be the center of attention. I just want to continue in my normal and current role as an active and participating member along with everyone else. Maybe that’s only realistic to a point. I guess time will tell.

I’m feeling very upbeat and positive these days. It feels good not to be sick after last week. It feels good to have some energy again. It feels good to be strengthened by God’s word and by the encouragement of others. I was thinking about my previous post and the statement I made about what I would be missing if this hadn’t happened. I still feel that way, but want to say that I don’t mean for that to sound like I somehow think that the path I am now on is superior to anyone else’s. I don’t. It’s just different than what most of us expect. The same way that I love to travel and experience new things, I look at this as a journey….an adventure…a chance to “travel” and experience new things. I’m excited about it and wondering what’s around the next “bend” in the “road.” I don’t want to minimize that there is a trade-off and I have lost things that most people have. There are times I feel the loss and do and will grieve. I guess it’s more that I am choosing not to dwell on that and to be open to whatever God has planned for me in my new journey.

I’m trying to take note of things that are different in the life of the deaf, that you might find interesting and wouldn’t realize. I think one thing I wouldn’t have thought about is that I can’t hear people coming in and out of the house anymore, so when Chet or Cody get home, I am unaware. I’ve been home alone doing my thing and then suddenly someone touches me on the shoulder – it’s startling, to say the least! They do that to let me know they are there and try NOT to scare me, but there’s not really any way around that! I try to pay attention to when I would expect someone to arrive, but that’s a definite change in daily life 🙂

Yesterday afternoon I had a time where I was deep in thought about all of the things happening in my life right now. I know that I have mentioned that there are things that I will miss out on no matter how many people work to keep me included. I have said it before – it is unavoidable. I had a moment of clarity when I realized that while it’s true that I am missing some things that I would not have missed if I could hear, if I wasn’t deaf I would be missing things that I will now get to experience. Simple thought, but profound for me. People in my life will make sure that I don’t miss the important things because of my deafness, it’s the little details that I will miss out on. Those things are definitely a part of life, but I think that what I will now get to experience and see happen in my life and in those around me is so much greater in value. I don’t want to miss it. People rise to challenges. People reach deep within themselves to help and be there for each other. People grow and change from these things. God guides us along our path. Character is built. Lessons are learned. This is not special and unique to me and my situation. This is how God made us and how He molds and shapes us to be more perfect and how He makes all things work together for the good. It always amazes me to look back and see the “domino effect” of major life events. I can’t wait to see what happens in the future!