Where to start...
What is deaf-blind? People think of Helen Keller when they hear the words deaf-blind, but not everyone who is deaf-blind is like her. Many are in-between, where they are not totally blind and totally deaf, but stuck some where in-between being hearing and deaf or sighted and blind.
Connection to the world is more challenging. You literally see less, and hear less. This is less input from your surrounding environment. Your life is more dull, isolated and sometimes you feel trapped. In the right environment, with the right people, you are not trapped, but this is a rarity.
I'm experiencing isolation. I feel like I am trapped in a Plexi glass tube that has some scratches or smudges on its surface. I can hear the people a little bit, and I catch a word here and there. I can see, but not all that clear. Input is limited. I must use more brain power to fill in the gaps. Sometimes I don't always fill those gaps accurately. It is a guess. While trying to fill those gaps, I am always working on overload. My brain works frantically to fill in missed words and to fill in missed cues. Hoping I get it right. It is rather awkward when I don't. People see me function and my loss is hidden. They don't notice the struggle and are unaware of when I miss information. I am a master at hiding my disability. This is survival in a very critical world.
Growing up in school, and even in college, I had a few people come up to me and say, "I use to think you were stuck up!" They thought I was purposely ignoring them. They had tried yelling my name really loud or waving with full body, I didn't respond. They thought I was ignoring them. But then in another situation, the lighting might be right, less distractions in the environment and they try to get my attention, I respond. This can be rather confusing for a person who doesn't understand life of a person who is in-between. Different situations create a different avenue of being able to see or hear or not being able to see or hear.
Background noise to a person with a hearing loss is like always being at a ball game with a very bad PA system playing. Hard to hear. Having a loss in different frequencies, creates a situation where noise is distorted. The sounds are not well balanced. Even direction is distorted. Hearing aids are complex. They are artificial hearing. It is not like real hearing, it is mechanical. In addition, I'm blind in one eye. A person could be on my right side waving to get my attention. I may not see them and may not hear them. I may hear my name, but will have to circle around to figure out where it originates. I wish people understood, instead of making judgements.
Talking to more than one person is extremely challenging. It is so frustrating and I feel so sadden when I can't keep up with a group discussion. This really puts a damper on a social life. There are ways to accommodate, but it takes cooperation from others to change their behaviors.
I have been fortunate to be around people who cue me in when the other person wants to put in their comments. I then can shift my head towards them. These people make my life real and make me feel alive again as if I'm a human. Not something to isolate and ostracize. It is awkward for a person at first to do this, but after awhile they get the rhythm.
Sometimes the challenge is, people think I hear/see well, that I compensate well. I do, but it is harder world of being on top of my environment. The effort of others is needed, and it is hard to communicate or explain that they need to help me out a lot, to include me as an equal. That without their help, I feel isolated, even though it appears I am fitting right in. This hidden aspect makes it difficult to communicate.
Life is managed, not cured. I cannot cure my vision nor my hearing. I cannot cure other people into being more sensitive to help me function in their social circle as a normal human being. I can only manage myself. This means I have to choose my social circles carefully. And that if I am not being social or talkative, it means I'm missing a lot. Normally I am the type of person that likes to be right there in the conversation. When it gets too overwhelming, I just stay quiet.
I put effort when I can, and save my efforts when I need self preservation. Sometimes I can't afford to use up energy to reach people. Some people think I may only need to put in 2 times the effort to join in, when they don't realize it is actually 10 times. And at that level it can deplete energy rather quickly. If people could pitch in a little, put in the 2 or 3 times, that would mean I would only have to put in something like 5 times.
My heart is sincere. I want to reach out, but if others can't help meet me with a little extra effort, I deflate fast. I can't afford using my extra effort combined with someone else's extra effort. It is like i'm doing all the work and because I'm the one with the loss, I carry the heavy burden when communication is about two people, not one taking all the effort. I fade, become quiet and then shift to being depressed because I'm not apart of the social circle. Times like these I'd rather be alone than be with a group. Being with a group when you can't join in hurts a lot more than being alone.
Life is isolating enough, and my gratitute for those who take that little effort means the world to me. You allow me to be alive, apart of society and apart of the social group of belonging.
Being in-between has it challenges. You never know when you got information and you never know when you missed information. Accommodations are crucial. Patience on both sides is crucial. It is a unique experience. That little effort that a person gives is like magic once you learn the dance and step on your feet a few times. But the beauty is allowing a person to feel alive, part of the community and accepted.
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