How do I live my life?

A confession.....

     when I was a young girl, I belonged to a youth group for the blind. That also had separately deaf children that attended the organization too. You would think that me being around partially sighted and blind kids, I would be ok looking at their eyes. Many eyes I accepted, but there was something about crossed eyes I didn't like. I thought it was gross. Why couldn't I look at these people? Why couldn't I accept the way they look? I always tried to be friendly with everyone, talked to everyone and was a social butterfly. No one knew I didn't like crossed eyes. Didn't matter one or two. I could handle any other eye condition, just not an eye that turned in. I should accept everyone!

      In 1982, I had my third retina detachment surgery that was unsuccessful. Having three surgeries put a lot of strain on my eye. A few months after I completely lost my vision, my eye turned in. I now, looked crossed eyed. I was horrified. I felt it was Karma coming back at me for being uncomfortable and not accepting of people who had crossed eyes. For years I had a hard time looking at people. I was so self conscious of being crossed eyed, it really took a toll on my confidence. Even some people acted different towards me because it isn't "normal". It just made me feel really  handicapped. It took me years to get over this. It took me years to be able to walk up to people and talk to them. It took me years to be able to give public presentations. I felt like a freak. Slowly and surely as I developed my confidence, it did become less of an issue. Being a park ranger, giving public presentations really helped me get out of my shell. It was very difficult for me to talk about myself. I was quiet and private. I was very self conscious.

         In 2006m my turned in eye, with no vision, started to hurt. The pain was intensified when I would lie down. I couldn't sleep. The doctor gave me eye drops to help with the pain, but it just didn't help. The day before Thanksgiving 2006, the doctor gave me an alcohol blocker to stop the pain. It worked but my right side of my face swelled up significantly. My eye lid closed shut. I thought I would never be able to open my eye lid again. I sent to a surgeon to talk about enucleation. While there he said I may never be able to open my right eye lid again. I was living in Ventura County at the time and the doctor was in Harbor City, close to Long Beach Harbor. That 2 hour drive home I cried. I couldn't stop crying I was so upset. I kept thinking I had a turned in eye looking like a freak, now I'm going to have a closed eye lid. I just want to look normal! Is that so hard to ask?

           July 3, 2007 I had total enucleation of my right eye. It is not easy to part with your body, but looking in a mirror just before hoping on the surgery table, a calm came over me asI saw the deep red blood looking eye, it is time. After surgery I wondered why I didn't have it sooner. In a few months I had a prosthetic made. It wasn't a perfect match, but for the first time in 25 years, I had the appearance that both my eyes looked forward. The a ocularist did such a great job in painting my iris, most everyone thought the prosthetic was my real eye. My eyes will never be even again, but I'm happy to say that at least my eyes look forward.

          Currently, I am on a borrowed prosthetic eye and it isn't a right fit. As soon as I get some of my dialysis taking care of and the time change comes the end of March, I will get a new prosthetic made.

           We are funny people, and why I have a difficult time with turned in eye, when it really isn't that big of a deal. I had made it worse than it is. I became a superficial person. I wish people wouldn't judge me, but here i was judging others. What a mixed emotional feeling this has been. My philosophy is to accept people as they are, and don't let stupid things like a turned in eye make me look less at a person. Turned in or not, the person is still the same. We need to stop judging people by superficial means. I hate it when people do it to me. I had  a flip taste of medicine, but at least now, I am a better person. I'm not so freaked out about turned in eyes and I can accept people for who they are, rather than their superficial appearances.

Living in-between Deaf-Blind

     It is hard to believe I have been writing this blog since 2010, still having experiences to share. I still struggle being in-between two worlds, a disabled deaf-blind world and a sighted-hearing world. I'm neither, just in limbo trying to see where I fit.

        Eight months ago I had an eye injury where a Dremel tool got caught in my hair, and the circular motion reeled the Dermal tool right to my face. Literally a fast smash to my face. I couldn't help but cry afterwards. I only have vision in one eye and any blow to that eye, I am highly susceptible to retina detachment. I am so fortunate I have the kindest retinal specialist who understands and had me come in for several follow-up appointments. he wanted to make sure to catch a detachment if one was going to happen. After 6 six months about about 5 appointments, he said it was safe to say this injury didn't cause trauma enough to have a detached retina.

          However, one thing didn't go away, the haze. My doctor said that could take a year to go away. What happens, and he said this is a theoretical guess, the gel or the vitreous fluid ball pulled away from the walls of my eye, causing a white haze. This has been really annoying because it took away my contrast. I have a hard time seeing faces and their expression, the red color blends in more and is harder to see. Darker rooms are posing a huge problem now. When i trial my dogs in rooms, I'm finding it really hard to read them. I do contribute this to my trial a week ago with Divine. I couldn't read her finite behaviors, got nervous and called alert. Everything was a blur to me because it was so hard to see. I was fretting and nervous the whole time. But yesterday with Mickey, he has a burst of air through his noses that is so distinctive when he finds odor, I call it and I'm right. So I am going to need to work a lot harder with Divine and in more dark rooms to over come this new challenge.

         Since it has been 8 months since the accident, I thought this problem would be better. It isn't. But it has posed a lot of problems in my life, reading my dogs in trialing, driving, straining etc. It is truely exhausting. It also makes me more stressed and on edge. I'm more removed from my environment when this happens. More isolated.

           Then of course, having a hearing loss, and then the loss of vision, it is an exponential occurrence. My ability to connect to people decreases. It is hard to be "social" and at times people think I'm self center. What is happening is I can't see the external cues to connect to that person, so it may seem that I'm more eccentric to myself. Talking to people one-on-one is much easier, in groups, I won't catch another person talking and often end up talking over them or interrupting at the wrong time. I feel so awkward when this happens and to try and recover, that opportunity doesn't always happen. I just become a drag. I noticed this happening more since the recent loss in my vision. It makes for a lot more awkward moments and alienation because people think I'm being rude, not realizing this is my disability. What helps if people can slow down and give indication like a finger up or another visual cue that is easy to see that they are speaking or talking. When more than one person talks, it is hard for me to keep up. Visual cues and speaking slightly slower is very helpful.

            Sometimes I think it is just better to stay by myself and not talk to people due to these awkward moments or times they think I'm rude. They don't understand I am not a rude person, I'm disabled. This is what it means to be a disabled individual.

           I found an awesome web site that gives a visual description of floaters in eyes. Not only do I have the haze, but I have several floaters. Most of the time I can't find pictures with floaters because  they show a few specs while I have a lot of specs, ropes, strings, globs etc. Below I have a link of an animated picture of many floaters. One of the best or "busy" I have seen. I have so many floaters, globs will float into my center of vision and disrupts my reading, seeing people's faces and even walking uneven surfaces. I constantly have to over think where I'm walking and what I'm doing to make up for this garbage that is floating in my center of vision. Often when I read words are competely covered. Sometimes I miss them completely or if I move my eye away from the word and back, it moves the glob out of the way so I can see the word. this can be really tedious. Thus why large print is a blessing.

       Scroll down to the picture with the floaters more like ropes and strings. Fascinating since it is animated. My float and dance around all the time. 

http://www.neogaf.com/forum/showthread.php?p=41955405

On the below web site, scroll down and you will see globs. If I could add these globs to the above picture, you have more what I see. then of course had a haze, like heavy fog and you see how I see out of my one eye.

 http://www.vote29.com/newmyblog/the-eyes-have-it-floaters-flashers-and-eye-exams/

The link below if you scroll down, to your right will be a picture of a Dalmatian, clear, blurry and clouded. With the clouded picture you can see how that takes away contract and clarity. I would say I see slightly better than this clouded picture, but when the sun is out bright, I am just as bad as this picture. Having the haze for some reason makes me extremely sensitive to light, bright sun, and light coming into a room especially when there is no lights on in a room. Any changes creates a drastic change for me to try and maneuver. I go into over thinking mode as I use my thought process to get through what I'm not seeing well. Exhausting.

http://www.allaboutvision.com/conditions/blurry-vision.htm

      These three great visual aids can give a person a better idea how I actually see. I do a lot of covering up and it isn't because I'm trying to hide my disability, I am just trying to survive and function. I want to function as normal as possible.

       Adding Stage 5 kidney disease where I am on a transplant list and about to start dialysis, this really took a lot of my energy away to try and compensate for what I can't see and hear.  Management of myself becomes more crucial. It also means I'm just going to have to offend people. I can't socially be on top of everything and will miss a lot as well. I just can't do it anymore.

        I am so fortunate that I still have my full-time job, still can compete with my dogs and try to be kind to myself. Those are the most important things in my life. Anything outside of that, I don't have the energy. 

When people just can't comprehend

       I have worked at my current job for 7 years. I had 24 jobs prior to coming to this workplace. The challenges I have had working at this place inspired me to start this blog In-between being Deaf-blind back in 2010. I always felt that the people I was around didn't understand my disability. It felt like they treated me as if I had a mild loss and I faked that my disability was more than mild. Some friends or a support system thought I was being too sensitive or exaggerated. I got my confirmation I was right on, last Tuesday.

       At my work we have this one bathroom that isn't used as often as the other two. The lights are dim and old florescent. I have a very difficult time seeing in florescent lighting, especially the old bulbs. As I walked into this bathroom with my service dog, a co-worker came out of one of the stalls. Her face is with a darker complexion which made it harder to recognize her. it took me a few seconds. She passed me and went to the sink to wash her hands. As she passed me she said something I couldn't "hear". The bathroom not only was hard to see in, but echos with addition of external commercial sounds. I said to her, "I'm sorry I couldn't hear, what did you say?" and she turns her back to me while she washes her hands and talks. I still continued saying I couldn't hear her, and she then went out the door.  Although I couldn't hear what she said, I could tell her tone of voice was with irritation and offense as she rushed out the door. Almost sassy.

       I had to use the restroom so I finished my business and then went upstairs, dropped off my service dog in my office and went to her cubicle. I told her that "I couldn't hear what you said in the bathroom." She said, "yeah but I waved at you and you just stared at me." I replied with, " I can't see in those dark bathrooms." With a quick defense response she said, "but you drive!!!" I said yes I do, but the DMV is always checking my driving, in fact I was there this morning. She looked at me with disbelief of I can still drive. i said, driving doesn't have florescent lighting. I can see outside. I explained that driving is different from a dark bathroom. I don't know if she believed me or not.

        This experience isn't about educating her, but that the experience was a huge relief to me. I've always known my co-workers have been hostile towards me. They think I fake my disability. They treat me as if I have a mild disability and I pretend to "ignore them" when they wave at me, or "hear more than I let them know." This same person approaches me in a strange way that it is hard for me to reciprocate. She talks really loud, waves adn says "Hi!" and walks away, never giving me a chance to say anything. 

         I have worked in this same department with this person for 7 years and I have special equipment, I use special hearing devices, wear hearing aids, hold paper close to my face etc. When I first came I gave a small lecture on how to understand those with a hearing and vision loss. I also have a service dog. It is obvious I have a disability, but yet, when i say i can't see something or hear something, they seem to want to disbelieve me. I have worked with some people like this before, but they were few and far between. One or two people at a workplace I can deal with and stay with the people who are more accommodating. However, when it is nearly your whole department, it is rather hostile. It has made it difficult to work in this negative environment for 7 years. I begged management to allow some education and sensitivity training, but they were adamant  that they didn't want the focus, which could be negative, to be on me.

            I function really well. I have been born with a hearing and vision loss. I have 50 years of experience trying to compensate for my looses. I have had neighbors not realize I had a disability and are shocked to find how well I function. Although this is great adaptation to function well, it also is a curse because people think I'm trying to cheat the system. I'm not.

            Hidden disabilities are very difficult and I know I'm not alone in this one. People seem to be more judgmental today than any other time I have lived. I'm so fortunate of how well I have succeeded in life and have risen above. I look more normal than disabled. I am extremely sensitive towards people who seem to have negative thoughts, disbelief or hostility towards me. It seems to be something I've learned over the years being disabled.

            I always seem to know when something isn't smooth or a person has an issue with me. I'm always on the money no matter that they say things are "ok". I know. I may not know the specifics, but I do know. Nothing I can do but be quiet about it becasue they will continue to deny it.

            It behooves me that someone I have worked with, challenged me when there is a lot of evidence of my disability. I always felt a hint of offense, and this incident was confirmation I was not being too sensitive.

         The irony is, she is offended by her ignorance, since I cannot help my disability. She keeps her distance from me and doesn't make herself accessible to me. It makes it hard to explain I have a disability, this is how I function. I have spent a life time teaching people how to interact with me. If they do not want to listen, like this person, and keep their distance, there is nothing I can do.

            I have had to develop strength to overcome the tension of my office. They have determined a dislike for me. Even when I got my senior position, many couldn't even look at me anymore. They have created the pernicious gossip, that they are ready to become offensive with me no matter what I do. I don't know what has been said, but it has made it very difficlt to know how to do damage control. But this incident gave me a little information that a problem is there.

         I now have the confidence that I can move on. I can be successful in anything I can do. Their negativity will not keep me down, although they try. When they want to be open, and reach out to me, I'm hear, but I can't do anything until they open up. I now know, it certainly isn't me.