An In-Depth Story about One of My Disabilities…Part 2

Here is part 2 of my 2013 interview by Bob Lowery. See yesterday’s post if you missed part 1

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4) During a typical day, are you constantly aware of your situation or does it take something out of the ordinary to remind you, “oh yeah, they don’t know I can’t hear them.” 

When I spend the days here at the homestead I rarely think about my deafness. My wife and I fairly effortlessly communicate with each other. We even have arguing down pat in sign language. Since I have managed to maintain a pretty good speaking voice (but don’t ask me to sing) I talk and she signs so most of the burden is on her. It is funny in that regard, when we do go to functions and such with other deaf people I have to tell my wife what they are signing as she doesn’t see signing often and she has to sign for me to them as I don’t physically sign much myself. 

But, whenever I go out into the “world” I am constantly made aware that I can’t hear. That gets tiring but it is just something I just deal with. I always carry a small pad of paper and a pencil wherever I go but you would be surprised at the number of people who refuse to use them! They simply can’t understand that I can’t hear them since I still speak fairly clearly. I have become pretty good at anticipating questions people will ask in different situations. So, even though I am not a particularly good lip reader I can usually figure out what they say and respond correctly. Usually but not by any means always.

5) Normal parts of American society, like ordering at a drive-through, seeing a movie or performance, watching TV…what adjustments must you make? 

I am a techie so I have all kinds of tools around to help me cope but drive-throughs have long been a thing of the past for me. There are a few movie theaters in major cities that have a captioning system but I have never tried them. I just wait for it to come out in DVD. The movie “Lincoln” is one I am anxiously waiting for now. Closed captioned TV has been around for about twenty years now and is available on all new TVs so I have full access to most programs now. It took the Americans With Disabilities Act signed in 1990 to make captioning mandatory. The quality of captions varies somewhat depending on whether the show hires “on the cheap” and therefore produces poor captions.

I wake up to light now instead of sound. A light flashes over the bed at the given hour. I have  flashers in the shop and barn to let me know if I have left something on before I lock up for the day. Of course texting has brought me the capability of now communicating away from home. There are tools out there for most any situation. 

6) What words of encouragement or reality-checks would you offer to someone who is in the same situation as you, or dealing with some other limitation? Are there both specific and general thoughts you can share? 

When I went deaf I initially thought it was the end of the world for me. My ear doctors basically told me to go away as they couldn’t help me any longer. It took quite a bit of searching to find organizations to help me cope. One of the first was ALDA (Association of Late Deafened Adults). This group showed me that I was not alone in the world. They showed me that there is indeed life after deafness. Although I don’t have much contact with them anymore they were a life saver when I needed them.  

If there is such a thing as a good time to go deaf it is now. There are numerous tools for coping and the Internet is usually just a google away from giving you a list. Cochlear Implants which is a medical/technology procedure actually allows many who are deaf to hear again. Unfortunately my particular brand of deafness can’t be helped by it but it is quite successful for many. There are now tools to help cope with many different situations. Harris Communications puts out a good catalog of products. Due to limited use they aren’t cheap but… 

In some ways most handicaps are the same. They put obstacles in our path to normal living. The main thing I would say about this is that life goes on after the handicap. Even Helen Keller who was both deaf and blind went on to a very satisfying life. I can’t imagine being both blind and deaf! Don’t think it is the end of the world if tragedy strikes you in this regard. The Lord gives us the strength to cope. In some ways I think my life is even fuller now than it would have been if I had not gone deaf so many years ago. If nothing else it gave me a good dose of humility. (ha)

7) What haven’t I asked that is important to you to talk about?  

Being that your blog is primarily about seniors and retirement the one thing that still needs mentioning is the number of seniors who lose their hearing and do nothing about it. That is truly tragic when there are so many aids available. Let me give you some statistics about that. About 20% (one in five) people who are deaf were born deaf. They are known as pre-lingually deaf. 80% were like me and went deaf later in life. About 60% of that 80% went deaf after the age of sixty. In other words the largest group of deaf are senior citizens. Unfortunately the majority of this senior group won’t seek help. They for the most part simply slip into the background of life.

If I were to give any advice to family of these seniors it would be to get the person with hearing loss help even if they insist they don’t want it. Get them a captioned telephone, Teach them how to turn on the captions on their TVs. Get them to an audiologist to see if hearing aids are possible. Get a book and teach them some signs. Don’t let them simply go off on their own. When you have family or other group gatherings make sure that notepads are strewn around the area and encourage everyone to use them to “talk” with the hearing challenged person. When the group is having a discussion assign someone to write notes about what is being said. Keep the person involved. Just don’t let the person drop out of everyday life! That is a tragic way to end their years and totally unnecessary.

This post is longer than normal, but his thoughts are too important for me to edit them to make them shorter. His feedback is about deafness but applies to anything that holds us back or keeps us from trying something. As he notes, we all have some form of handicap to deal with but life goes on.

My deep appreciation to RJ for the time he took to answer my questions. My deep admiration for his forthright approach to living a satisfying retirement no matter what life throws at him.

2 thoughts on “An In-Depth Story about One of My Disabilities…Part 2

  1. This article, split into two parts, offers so many good points in understanding your situation as well as that of a broader group of people.

    My granddaughter takes her cochlear implants off a night in order to dehumidify them. Her “alarm clock” features both flashing lights and a shaking bed. (She’s a hard one to wake.) We two had a particularly hard time this last two years. I’m immuno-compromised and also cannot vaccinate due to a life-changing reaction to a previous vaccination. She is not vaccinated for a different reason, due to her inherited metabolic illness. I need to wear a mask around her, but she needs the clues from my mouth, lips and tongue to fully understand me. I have been strict with mask-wearing, but I’m also not willing to not communicate with my granddaughter for years. For her, I make an exception, at least to some degree. Most of the time when I’m listening in on the grandchildren or whole family, the mask is on, but if I’m talking to her, I back up and lower my mask. She can lip-read from an astounding distance since she’s been deaf since about the time she turned one.

    Sign was her first language, but as soon as she got the second cochlear and was bilateral just before her third birthday, she refused to sign. She was in a sign/oral program at her school. I think she thought that signing was for babies. We tried to keep using sign, but she would turn her head away.

    One other aspect of having any disability is how much of the cost of equipment falls on the person (if adult) or the parents. My daughter and her husband are fortunately able to afford her cochlear implants which cost tens of thousand, but our neighbors with a daughter just two years younger who has severe CP struggle to pay for the van they need to transport her places or the equipment that allows her to “walk” in the neighborhood with other people.

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    1. Thanks for the story, Linda. I used a bed vibrator until I could reliably wake up to a flashing light. Now my Apple Watch’s tap on my wrist wakes me up in the morning. Thank heavens for technology, my life is so much easier than it was just 2 -3 years ago because of the tools that have been invented in that short period of time. Just about everyone here at my Retirement Community (RetCom) knows about my voice to text apps and are now comfortable using them. That takes so much stress out of my life.

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