I never meant to let so much time go by when I didn't write! I have a lot to tell about what's been going on during the last few weeks, especially with my eyes and ears.
I've actually had a fairly good stretch in terms of energy and anxiety, even without taking Xanax every day. I think my body is a bit more stable on that ground. I spent a week doing heavy cleaning and then had company for my birthday week and the week following. I have to say that this was a birthday I will remember with a lot of happiness. I learned a few things, one being that I can't play clean-up-my-own-mess and think this prepares me for a family. Cleaning up my own mess is relatively easy. Even if there's a lot to clean up because I've slacked off, I know where the mess is because I made it, and I know what I'm going to find. It's different when I am dealing with other people's mess. I discovered that having company with stuff scattered all over the house made me feel a bit out of sorts. I've never noticed this before, and I think part of me is mildly puzzled about it. Why would I be experiencing this now?
Another thing I've discovered lately is that I seem to be having another decrease in my hearing and increased problems with balance. I'm not sure if maybe I just don't notice it until I'm in a situation where I have to use it more than I do when I'm alone. The number of times I asked for repeats or misinterpreted a phrase completely seemed much greater than it normally is. I don't really know how to measure the changes, especially when the sound content of my environment changes so much from day to day. I noticed the other day that I had the speech output on my computer turned up very loud. So was this a fluctuation and not a decrease? I'm assuming that I hadn't thought it was loud before. I had a lot of problems with my balance during the last two weeks. Was this related to the hearing problems? Could both have been reactions to something I was eating and am not eating now? Was this an anxiety issue, even though the anxiety was mostly positive? I'm tired of stress-related illnesses! I'm thinking about getting another hearing test, but part of me doesn't want one. If I avoid it, maybe the problem will go away or resolve. Of course, that rarely works.
I wrote a bit to the Blind-HOH list (a group for people who have vision loss and mild to moderate hearing impairment) and asked some questions and vented a bit.
Do you find yourself not wanting to go out because of things like acoustics, "busy" environments, etc? I now hate Walmart and most grocery stores because of this, and I really hate large group gatherings. It's very hard to explain any of this to my family. I'm more likely to put up with things that are hard if I know that the group in general really wants me there and will make effort to keep me included, but I get upset if I can't process what's going on and people seem to have forgotten about me. I do notice that sitting near a wall is helpful and that I seem to hear sounds better when they are behind me, so if I want to block out sound and have the option I choose to have a wall behind me.
We still have no idea what the cause of my hearing loss is. Since I have complicated migraine and severe mold allergies, both of which can have associated dizziness, differentiating Meniere's is very difficult. In fact, my PC and neurologist disagreed about Meniere's completely and gave the same reasons for their opinions! Interestingly, reactions to toxic mold also can include hearing loss, and apparently it is irreversible. There is a list of foods that should not be eaten by people with severe mold allergies, sort of like the list for people with migraine. I have strong neurological reactions to foods on the mold list but not to many on the migraine list. So apparently dietary control is going to become as much of an issue for me as it is for a person who is diabetic. I've noticed that my change periods have occurred when I've "crashed the diet." Guess I should learn not to crash the diet.
I also asked about describing changes in hearing. This is probably the most frustrating thing because I can't just say, "I can't hear that anymore." People don't have a frame of reference with sound like they do with vision, and hearing is a completely different thing. Because I lose decibels at various frequencies, much of the problem isn't that I can no longer hear sound but that I hear it differently and have to learn to interpret it in a new way.
I started to write about something a few weeks ago and never finished it. I think it's relevant here.
I've been thinking about the concept of feeling "exposed" lately... Well, not just "exposed." Exposed and evaluated. I wrote about this in my journal a few years ago--actually, just over four years ago. (Sometimes my life seems way too cyclical.)
One of the things I noticed the last time I lost my vision before the surgery was that I felt exposed, like no matter what other people were doing they were always watching me. It was to the point that even if I was in a supposedly private place like a bathroom stall or, to be honest, even my own apartment with the blinds closed, I felt like people could somehow see in. It was a terrifying feeling. Mom asked if it was because I couldn't look back. Maybe that was it, but it hasn't really gone away even though I can look back now.
This theme has come up a lot of times in my thoughts and discussions lately. I know that other blind people sometimes experience it. It seems that some don't, but I wonder if part of that has to do with having authority figure who emphasize awareness of what other people think, what's normal, etc. What does it take to overcome this? For a while I thought that positive feedback might help, but I realize now that I have always struggled with this even though it wasn't always related to feeling exposed visually. I felt the same way when my mom discovered a tape of me playing the piano when I was 12 and asked me to play for her. I feel the same way when someone downstairs makes reference to being able to hear me talking or singing up here. Is anything I do private? And if I can't hear correctly, how am I to gage my own volume and protect my own privacy? It's not something I can work around like I work around blindness by going around and checking the blinds.
I'm still getting used to discussing this at all. I often think that I should be thankful for what I have because my loss is categorized as mild (last year was at 20 to 35 DB depending on the frequency). But the worst frequencies are those in the range of traffic and speech sounds. Logically I know this is very different from what a person experiences with loss in the high frequencies. I'm also aware that my preexisting blindness makes this loss more significant to me than it would be to a sighted person. My usable vision is very limited--print was a secondary reading medium for me when I was very young but I can't read it at all now. I can see a person's outline from ten to twelve feet away, but I can't see gestures or lip read. When I first got my aids, music sounded noticeably different with them and without them. Now it sounds vastly different. The quality of a person's voice is so diferent that I'm not completely sure I would recognize some people with the aids who are familiar to me without them. I am also a musician, so losing my hearing feels like what I imagine losing vision is like for an artist.
My eye seems relatively stable. I have an exam on Friday, and I suspect that we will decide not to do stage 2 as long as the bit of natural cornea covering the implant stays clear. Sometimes it seems like a very interesting coincidence that the word to start using corneal tissue instead of the conjunctive flap came the day of my surgery, but really I think that is evidence that God knew what was going on and what I would need to have a positive outcome and minimize the trauma to my eye.
It's hard to describe what I can see. I'm discovering more things all the time as I go into other environments. Much depends on lighting and my position related to what I'm looking at. Given the right lighting and positioning, I notice that my attention can be drawn to colors and that I can perceive contrast and that colors seem familiar to me. I'm still not able to pick an object and reliably identify its color; but I lost my color vision very early and wonder if I could learn to identify color in time if my vision remains stable. Taking my friend to the bus station on Saturday, I noticed that I was able to see her bag rolling about ten feet away. It was about two feet high.
I still hope the issue of treating my left eye will come up sometime soon. It's something I've waited so long for, and I'm so eager to have this eye stuff done already! I know I'm learning patience, but the left eye thing is one thing I really wish could be done soon so that I could concentrate on healing from whatever is done and finding out what I have in that eye to work with.