Helen Keller was reputed to say, "I am as deaf as I am blind. The problems of deafness are deeper and more complex, if not more important, than those of blindness. Deafness is a much worse misfortune. For it means the loss of the most vital stimulus - the sound of the voice that brings language, sets thoughts astir and keeps us in the intellectual company of man." In her advancing years she said she had concluded, "after a lifetime in silence and darkness, that to be deaf is a greater affliction than to be blind. Hearing is the soul of knowledge and information of a high order. To be cut off from hearing is to be isolated indeed."
Phyllis Miller gave proof to this in a heartfelt response. "Lack of confidence, the lost feeling, the isolation. You feel like you are in a padded room with no outside stimulation at all. You don't know just how much sound influences you until you lose it. Sure, we have closed captioned TV, flashers, TTY's. However, living alone, you need more. During the winter was the worst for me because I could not get out to interact with others at all. It was complete isolation unless I was looking at something or there was a vibration. Even a tiny bit of hearing would have been a blessing then. I can't begin to describe the despair I felt at times when I would be at home for a few days alone and nothing to really help me with living. Sure I read, paint, quilt, watch TV, talk on the TTY - the whole nine yards but there is an isolation that I can only describe as being in a padded room with nothing getting to you. My family was used to someone deaf. My brother was born deaf, however no one understands until they have been there. I do not think I could go to complete deafness ever again. The memory of music and sounds was all that kept me going sometimes."
Rhonda Otis from Southern Georgia wishes "I didn't have to try so hard to listen to understand conversations in a group of people. I wish people didn't give me a funny look when I misunderstand what they say. What a life." Sommer Lawrence understood and offered, "I get too sensitive when I misunderstand people and I have to explain to them that I'm HOH and I read lips. Everybody makes mistakes."
"Jokes, snappy repartee, funny retorts that used to make me laugh. The peeping of tiny baby birds in their nest and that's just the beginning" said Penny Antine. E. D. Everett's number one miss is "not being able to communicate as effectively as I once did. Lip reading is a grand skill but it is impossible to get everything everyone says. While I don't care much for the phone and never did, I do miss not being able to use it easily when I want or need to do." E. Whitcomb of Northfield, MA makes a point I can relate to easily. "Without a doubt, what I miss most is spontaneous conversation. Conversations tend to be labored now, especially when on the phone. Calling family and friends is very difficult. Then on top of it, I feel guilty because I feel like I cannot be the listener that I want to be for others." For myself, I am losing word discrimination and thus confidence. I'm not sure what I hear is what was said. I will still start a conversation or make a comment but I'm ready with humor if I have misunderstood. The phone which I once loved is no longer my favorite toy. I avoid it. Email has become my phone.
Jim from Montpelier misses speech. "When people talk, they tend to drop their voices at the end of a paragraph or sentence. I strain to understand a conversation, joke, lecture, etc. and then miss the last few words or sentence. What a bummer! That's it and thanks for asking. I never get to talk about this subject much." As well as losing her enjoyment of music, Jo Gunnerson misses, "being able to carry on a conversation without having to strain and ask for repetitions. I miss being able to enjoy chatting on the phone." Cynthia in Orlando, misses, "talking to people, listening to what people have to say without having to repeat themselves." Lorene Graham misses "being able to participate hearing and talking with people easily without missing anything said."
Carolyn (Turtle) misses "communicating easily with human beings. (I am fine when I'm home alone! But then when I'm home alone I need to be on guard, always aware -- is the phone ringing? Is there someone at the door?) I am staying away from groups as much as I can. I miss being at ease when someone comes to me to speak on any subject; I have to, first of all decide what the subject is, and then, think about what the person might want to communicate about that subject and ...gee whiz, by that time I am expected to reply to the speaking human being! And I worry that I may not have guessed correctly at what the subject and the statement are. Makes me nervous!"
Louise (Tanya Martelli) misses "a social life like I had before I became profoundly deaf. Parties, music, dancing, jokes and laughter with friends and family." Along the same lines, Diana from New Jersey wrote, "What I miss the most due to my hearing loss is the punch line of many jokes. Also the office chatter about work that goes on while working. I can only do this one-on-one. And I usually have to stop whatever I'm doing. Charles Cole from the Birmingham SHHH'ers said, "I can't understand people and can't have conversations. Makes it hard to meet new people." Mary Seymour has a problem that I have, "When we go out to dinner with a group, I miss not being able to understand what is being said. I have to sit at the end of the table so I can see most of the faces. It's tiring sometimes to read lips and I just give up."
A variation on this is from Elca Branman, "I am someone who doesn't know what I'm thinking until I verbalize it. The spontaneous interplay with other people's minds and spirits is so stimulating and yet unavailable now. I can still have this pleasure in optimal circumstances, one on one, but I can never successfully partake in a vigorous political discussion, or follow a give and take between people, or hell, even play charades; I can act out the word but I don't know what the other players are shouting at me. As a late deafened adult, I miss the crowed lunch table at work and sharing stories with colleagues; nobody speaks slowly enough or stops talking over people so that I can function. By the time I've translated the sounds I hear into meaningful words, there's a new topic...well, I'm sure you know how that is. I'm sometimes very, very hungry for the group situations that are no longer available to me."
Suzanne Jeffery said, "I was on a panel of HOH people presenting to a class of students in a college program. The unanimous answer, our social life. The loss of friends, who don't understand the freedom to be part of a large crowd and feel included, family celebrations, eating out. The list goes on.....As a young woman I was always at every party or social event. Always in the middle of things. Now my social outings are only those where I don't have an excuse to skip. When I misunderstand something that has been said, I try to have a sense of humor. I have had some very funny experiences. A sense of humor is a saving grace but it may be later that you can see the humor."
The Birmingham SHHH'ers contributed to conversation and social events as well. Margaret Kime told me, "I miss being able to hear in large crowds or a large room and I also miss being able to hear well on the phone." Joann Reitenour added, "I miss being able to hear accurately if a head is turned from me, hearing around corners and hearing in a noisy environment." As well as missing music, Shirley Duggan misses, "talking on the telephone. The VCO is great but not for visiting calls or long winded calls." Mary McIntosh misses "joining discussions" while Katy Meehan misses "hearing well on the phone, hearing in church, hearing in a group and I only hear pretty good in a one on one basis. I miss hearing the TV and the alarm clock and hearing in the back of a car."
Denise Harrison misses "hearing a joke and its punch line without asking for it to be repeated while everyone else is laughing. I miss being able to have a conversation in the car or having a conversation without several "pardons", "could you repeat that's", and "come gain s" per minute. Marguerite Ellison "regrets not getting everything that's said and not realizing this, also getting the wrong information. I grew up not hearing and my hearing aids opened up a whole new world for me."
Lassell Comegys misses conversation. "I love people and I love to talk. I have to guard interrupting another conversation that I didn't realize was going on. This is embarrassing and I have to watch before I say anything. I avoid meetings. I have difficulty in understanding my great grandchildren but they are my greatest help. They say, GG look at me and then they will speak slowly, enunciate clearly, and repeat willingly." Lassell gets a lot of cooperation and hearing and understanding help and adds, "I do appreciate this. I have never been abused because I can't hear and have never sensed being criticized because of my lack."
Marissa writes, "I definitely miss just simply being able to join in conversations. I'm at school the whole day and I generally don't talk. The only time I get to talk is when I participate in class. I'm pretty much a loner in school not that it bothers me but I do get frustrated when the students are "chair-warming" before class begins and I've no idea what they're talking about. Most of the time they're laughing so it's obvious those little chats are funny, which I would love to hear. If my CART provider is there she'll usually caption those chitchats. She's basically the only person I really talk to without any trouble because she'll just type during our conversations. You'd think that of all people to not question my need for CART, it would be the older students instead of the younger ones. But there's been some older students who wondered why I needed a CART provider and how much they cost. They assume since I can speak well and carry on simple conversations that CART is like cheating, which is unfair to them. One lady even told my CART provider that I can read lips so what's up with that? I was angry but mostly hurt.
Roselilly said, "Most of all I miss the ability to socialize and participate in group conversations. I also miss going to the theatre and movies. I am concerned about being unable to hear the phone, the doorbell and the firm alarm. I miss the me that I was before I lost my hearing."
I went to a one-time class with an author and rare book dealer. He told the class that we are our best stories. After being allowed to read your stories and put them down for others to read, I understand his statement.
Judy Siciliano found this to be an interesting question, so she was compelled to come out of the woodwork and make a comment on it. First of all, I guess I could not answer the question at all unless I experienced hearing and then lost it, to be able to compare the difference in my life because of this loss. Many times I have mentioned here that I have adapted and accepted my hearing loss, and have learned to find other ways to deal with the loneliness that this loss ensues, but now sometimes I find myself embracing being alone so as not having to 'work' so hard to hear. I have recently noticed that after having experienced some stressful times which I have been going through this past year, that I am finding it harder to cope with this deafness as well as I did in the past. My coping with this hearing loss (which we all know is stressful enough) is becoming more and more painful to me. Now my mind has come to a point where there is a saturation of thoughts that is burdening my senses and has taxed my concentration to the point of not being able to lip read as well."
Since we do need our minds as well as our eyes to "hear", all of this concentration and watching people s lips and faces has stressed me to the limit. Also when I'm stressed I find myself losing interest in even trying to hear, probably due to the depression I feel in having to "work" so hard at trying to hear the conversation around me and always watching and observing, all day long having to watch for a sign of a conversation starting or someone begins talking to me or a sound that I must recognize, so that I must be tuned in at all times, alert to what's going on around me. So I will be ready to answer or respond to it. What is that I'm hearing now? Is it the dog barking at the mailman, or is it the noise of the washing machine overloaded? I then must get up and go see, I must always go SEE WHAT IT IS, SINCE MY EARS DON'T WORK. It is just so tiring, always having to be on my guard. So I find that I am withdrawing more not paying as much attention as before.
So, to get back to the question. What do I miss most? Outside of not being able to participate as a normal functioning hearing person, I guess it would be that I have to work so hard and concentrate so intently to lip read to "hear", and always on my guard for sound, and what is that sound that I am hearing?
I am very tired of lip reading. I have been doing it almost all my life, and my mind is so tired.
I ve seen this movie several times called the Elephant Man. It was such a good movie of a man who overcame the greatest disability anyone could experience, his own ugliness and get a little approval from society. And he did, and he did well, to the best of his ability considering the challenge he faced. But the one thing that bothered him the most was that he could not sleep in a normal prone position as others do, because if he did he would not be able to breathe due to the disfigurement of the tumors on his head. And at the end of the movie, since he had accomplished the goal of getting the respect of those around him, the one thing that he desired, I suppose, more was to be able to sleep as normal people do. And even though he knew it would kill him the desire to lie down in a prone position to sleep was more overpowering then his will to live. He was tired, and he just wanted to sleep as normal people do, and he lay for the first time and died peacefully. I cried for him. I understood his pain and what he must have felt, and I felt so sorry for him, but he was now at peace and he no longer had to endure the abuse and the cruel taunts of that ignorant society (I think the movie was supposed to represent life in the 1800). After watching this I sure realize that there are worst things I could have been afflicted with than to be deaf as this poor man was. He suffered so much more than I ever have. But there are other emotions that the human spirit holds inside all of us and SOMETIMES this emotion may come to a point where it has had enough. For me I think this emotion is grief of my loss of hearing. I can remember way back when I was a young girl and could hear almost normally where I would just get up in the morning and not think about MY having to "work" to hear today, I just heard with my ears as THEY did all the "work" all by themselves. My ears did what God intended them to do, they heard for me. I sure miss not having to "work" to hear. Now I am tired, my eyes are tired, my mind is tired, and I sure miss my ears working all by themselves, like they should. When you re totally deaf then I would think that your mind is more at ease not having to struggle to "hear". This is only speculation since I am not deaf, but I am not hearing either. So it sure is a struggle in many ways to cope with living in this hearing world without having to work at it EVERY SINGLE DAY.
Thank you to all for sharing your experiences with me - Theresa