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 🙂