This is a big/huge confession for me.
When I was 18 years old, I was diagnosed with a lazy eye in my left eye, and I was told by my eye doctor that I would eventually go blind. This frightens me to death. I am already profound deaf and that's 1 big strike against me. I have a cochlear implant, but even after 6 months of speech therapy, I still cannot identify any environmental sounds except for the knock on the door and the phone ringing, and music. Nothing else. Even after going through speech and environmental sound therapy 3 times a week for 6 months. This was with a home health speech therapist, not a speech therapist that specializes in people with cochlear implants, because the only ones that specializes in cochlear implants only either does speech therapy with children or they do not take my insurance. That's as far and as much as I got, and my insurance will not pay for more. Even if I had more therapy and with someone who specializes in people with cochlear implants, I highly doubt I will get any more benefit due to my hearing background and history. And the speech therapy is VERY tiring and very time consuming. If I go blind, how will I be able to live independently if I cannot identify any environmental sounds like cars and whatnot? How will I know when it is safe to cross the street if I can't tell if the cars has stopped and if it is safe for me to cross the street? How will I know if there is someone behind me so I can make sure no one will rape or rob me? I already do not like people walking behind me at all, I always stop and let them pass so I can see them. I was told that when I go blind, I would be placed in an institution and that I would lose all my freedom AGAIN because being both deaf and blind, I would have no ability to live on my own and travel around the city on my own safely and that I would be totally dependent on other people to guide me and stuff.
I am 28 years old now and I still can see just fine with just my glasses and nothing else, but knowing that I will eventually go blind frightens me to no end. I already am long overdue for a new pair of glasses. This pair I have was from 2004, I believe. I don't want to live in darkness, not knowing who's there, and what is around me, and not being able to see colors and shapes and people's facial expressions and people signing and lipreading and whatnot. Facial expressions and lipreading and being able to see people signing are extremely important to me. Not knowing what is going on around me scares me. I am very scared. I do not want to live in an institution and I do not want to depend on anyone else. I do not want to sleep in any other bed except my own due to severe PTSD thanks to foster care hell. I will only sleep in my own bed in my own apartment or house. I want to live, grow old, and die in my own house, not in some institution or nursing home or a group home. I do not want to depend on someone. I want to be completely independent. I want to be able to hear and identify the sounds around me so I will be able to live on my own and travel around the city on my own with only a guide dog, a white cane, a braille GPS (forgot what it is called, Hear Again has one) and nothing else. I do not want anyone leading me around. I want to be able to speak to other people and hear their voices and understand what other people are saying on my own and be able to use my voice to speak. I can speak only a little, but not enough to carry on a conversation. But my already being deaf prevents that, even with my cochlear implant. Being deaf is one huge strike against me, even with the cochlear implant, because I got my cochlear implant only a couple years ago in October of 2006. If I had gotten my implant when I was a small child, or if I had grown up HOH with the ability to understand speech and environmental sounds and then gotten a cochlear implant later in life, then I might have hope of being independent, even if I become blind. But since I got it late in life, I have no hope of living on my own when I become blind. I truly do not want to live in an institution, and I truly do not want to depend on another person. I only want to depend on a guide/hearing dog and a white cane, braille, JAWS, and other blind and deafblind equipment, and that's it. Nothing else. I truly do not want to depend on another person. I only want to depend on myself and my own equipment and a guide/hearing dog.
I know that Hear Again is able to live on her own and travel around the city on her own, but that is because she has been HOH for most of her life (am I right, Hear Again? Feel free to correct me.), so she already knew all the environmental sounds and speech to begin with, so when she got her cochlear implants, she was already able to benefit from them quickly and she already has. I truly consider her very lucky. I was not HOH. I was born hearing, but quickly lost my hearing shortly because I caught chicken pox as a baby and in a baby, chicken pox is very dangerous and can cause severe complications such as deafness or blindness or other things. I ended up with deafness. I was able to benefit very little from hearing aids until around the age of 9 or 10. I could hear environmental sounds and voices, but never was able to identify any of them. I was always profoundly deaf nearly all of my life since being an infant. I have always been envious of those who are HOH, because they have something. When I go blind, I will have nothing. That is what scares me.
I am also a very visual person. I need to look at things so I know what people are talking about. Descriptions confuse me. I am also an artist, and art is my passion. I love colors, and I love pictures, and I like to see art. If I lose my sight, I will be very sad, and I will lose the ability to enjoy art. The only thing I will have left is music. But I cannot live independently while blind and deaf if all I can identify is one or two environmental sounds and music. That is not enough to go on with. Music will not help me cross the street safely or tell me that someone is behind me about to rape me.
I honestly do not know what I will do when I go blind. I just hope everyday that I will not go blind for a very long time. I am thankful for each day that I am able to see. Visual is everything to me, especially since I am deaf. I depend on my eyes 100%. Seeing is EVERYTHING to me. I truly do not know what I will do when I go blind, and I truly am scared to death.
I would like some support, so please do not make fun of me or tell that it's no big deal or whatever, because this is a HUGE deal to me. Maybe it's not to some other people, but to me it is. I have a very hard time with change. Thank you.
how cute!
