I actually want this blog to have some focus. My thoughts seem to have a theme that has developed over the last few years. How does disability impact my life and my faith, and how does faith impact my life in general and as a person with a disability? My faith calls on me to tell my story, and these are the things that make up my story. I don't like to think of disability as a central part of my life--and in fact the "blindness culture" often encourages people to think of blindness as "just a nuissance" or characteristic. But it isn't, and neither are the other conditions I face. They shape who I am, how I think and act, and how other people act toward me. In turn, my thoughts and actions and perceptions of other people's thoughts and actions toward me also shape who I am, how I think and act, etc. Thinking about that sometimes makes my head spin, but sometimes it's also an amazing thing to me--almost a mystery.
Now for some basics... I don't like to write a journal as if I'm writing to the reader, but part of the point of this journal is that it's intended for public viewing. That means that I do need to acquaint readers with things about my life that are obvious to me and that I wouldn't normally write in my private journal or say to my friends. I could direct readers to other sites where I've written all these things, but another thing that's important to me in keeping this journal is that it be able to stand alone. That means that if you're here and you're my friend or you've read my other writings, I may seem to repeat myself.
I'm sharing a lot of things about not only my disabilities but about the abilities I have. I'm feeling a bit self-conscious about the amount of detail I'm including, but it's important to me for people to know these things. These are the things that nondisabled people ask often when they are getting to know me and forming their ideas about how to relate to me. Knowing about my abilities and limitations and how they have changed is an essential part of understanding my experiences and changing viewpoints.
So without any more editorializing, here's the low-down on me and disabilities.
I was born around three months early, weighing in at a whopping two pounds two ounces. I was not breathing when I was born, but just as doctors and Mom were giving up on me I cried. So off I went to the incubator, and my parents did nothing but look at me in the window for the next three months. I suspect that this lack of contact had a lasting effect on me. I can't prove it, but I am fairly certain about it, and this is something I will probably elaborate on in the future. God has been gracious in healing those things, and He's still working on it. ...
When I was five months old, my parents took me to Tulane University in Louisiana because they noticed that I was not looking at objects consistently. The doctors found that I had a lot of scar tissue in my eyes and my retinas were partially detached. This condition is common in premature infants. There was no treatment at the time, and the doctor told my parents that I might have some vision in the right eye but probably would be completely blind.
When I was about a year old, I began to notice lights, and my parents found a teacher at an early childhood center who did visual exercises with me so that I could learn to recognize shapes. She also helped me learn to use my other senses so that I could, for instance, find a dropped object by listening to it fall and following the sound.
We moved to Texas when I was four, and we lived with my mother's mother and stepfather ("Granny and Gramps") for a while. I have vivid memories of them and their house because it was full of sensory experiences. They had a big yard with many trees and flowers, and I remember seeing piles of leaves in many colors. I never could match colors and words reliably, but I could see the different colors and I love to look at them. My sister was born in December that year, and I remember trying to see her through the nursery window. I could only see the receiving blanket. I could not see her face.
I learned my letters and numbers using flash cards and magnetic letters made by PlaySkool. These have braille on them now, but my set did not. When I entered kindergarten, I could identify all of the letters visually. I could read letters about one inch high from about three feet away. My parents decided to have me learn braille because doctors had told them that I might develop other eye problems or even need to have my eyes removed if they ever became inflamed or painful.
When I was eight, the vision in my right eye deteriorated very rapidly and my left eye became very painful. The doctor gave me drops for the left eye and said that I had glaucoma. The pressure in my left eye was too high, and the cornea was damaged as well as the optic nerve.
I also had a cataract in the right eye, which was causing the vision loss. I was hospitalized for surgery,. The cataract was so big that the doctor removed the lens completely from my eye. Normally he would leave part of it so that the person could have an artificial one implanted. My eye was completely patched for three days, and I refused to let the doctor examine me because his light was so painful. On the fourth day, I told him that I wouldn't let him pry my eye open but I would do it myself if he would keep his light away and open the curtains on the window. I was holding a white stuffed cat, and when I opened my eye this was the first thing I saw. I recognized the white color, and I made my mom take me up and down the hall so that I could look at windows and doors and lights. Later I got a magnifier and reading glasses, and I used a closed-circuit TV to enlarge print and read comfortably until I started the sixth grade. This was a very slow way of reading for me, and I could not keep up with homework using print. So I began using braille only.
I had also been learning how to use a cane in front of me to keep from tripping, bumping things, etc. I was very ashamed of this for several reasons, and I still have difficulty emotionally with using the cane when there are no other blind people around. This was how I got around in school. I would not use it at home, and my parents did not expect me to. They would not have discouraged me from using it, but they didn't know how much it could help and they were afraid of giving me true independence because of their lack of knowledge about how blind people orient themselves to the environment.
My vision declined very gradually during adolescence--so gradually that I didn't notice it for a long time. Since I was not reading visually anymore, I didn't realize that I couldn't do it until I was 16 and decided that I wanted glasses. I had worn a contact lens for several months when I was ten, and I remembered that I was better able to judge distance when I had it. Without it, I cannot reach for an object that I see and actually find it. My hand reaches for the object in the wrong place.
I did get the glasses, and they were very helpful. I used to ride tandem bike with my dad, and I remember seeing a cloud for the first time while we were riding one day and I was wearing my glasses. I also remember passing a field with some horses in it, and I could see the four legs and was amazed that I could see the shape of the horse.
But something else was happening. I was experiencing migraine with aura by this time. I didn't always get a headache, but I often lost my vision for a period of several hours. I also became dizzy and disoriented. I might perceive things backward. For instance, if a person stood on my right and spoke to me, I thought they were on my left. I often felt like I was upside down. I also had difficulty with short-term memory and finding the right words. I also had muscle weakness and difficulty speaking. A doctor gave me medicine, but eventually I stopped it with his permission because I had stopped having symptoms. I now understand that if I stop having symptoms, that means that what I am doing is helping and I should continue doing it.
In 1991, I lost my vision again, just like I did when I had a migraine. But I had no other symptoms, and the vision did not return in a few hours. It stayed gone for several months. I went to the eye doctor, and he said that I had glaucoma in my right eye. My vision finally returned, but medication did not bring the pressure down. I had more surgery in 1992.
After this, I got another contact lens. I was able to see objects, and this was helpful for finding buildings, sidewalks, etc. I had a dog guide by this time, and I was much more comfortable with a dog than with a cane.
In 1998, I lost the vision again very suddenly. My doctor said that my cornea was so cloudy that he could not see into the back of my eye. He did an ultrasound and found that my retina was detaching. I had surgery again in December, 1998. My retina had been pulled away from the back of the eye by a blood vessel that usually stops growing during infancy. But it had also been kept healthy by that blood vessel. I had a lot of cell regeneration, which is very unusual, and I regained a lot of the vision I had lost over the years. I was able to perceive some very small objects like pieces of food on my dinner plate, and this surprised me because I never used my vision for eating when I was a child. I also saw a star for the first time.
The doctor believed that I could learn to use the vision efficiently for some things. It was going to take a lot of work. I started doing eye exercises, looking at things and then touching them, watching videos and TV to teach myself to focus on pictures, etc. However, the donor cornea was rejected, and it took a long time to get the cornea specialist to admit it. Every time I became ill with a respiratory infection (which was every four to ten weeks), I lost the vision because the cornea would cloud over. It would come back when I was well, but it was never as clear as before. By February, 2001, I could not see a baby's face while I was holding the baby. I could not see objects anymore, even if there was high contrast.
I got a new cornea specialist, and in March, 2001, I had another transplant. It was very stable until November. It is now classified as a failed transplant. I've been advised that another transplant would probably have the same results. My retina is still stable, and I can still see changes in contrast. But I require a lot of light to do this, and when it is cloudy outside I am now pretty much totally blind. Indoors my vision is very inconsistent because lighting is different in every building. I can sometimes follow a person from about five feet away if the environment is not too "busy." But I rely on my dog guide when I am in unfamiliar environments. Once I am familiar with a place, I can travel through it and rely on the dog to take me around objects that I might not see because I am looking at something else. Part of my retina is still detached, so I cannot see objects to my right without making a conscious effort. When I'm talking with people, I can focus on their face, but I cannot see their features most of the time.
In recent years, I have discovered that I have a very small amount of vision in my left eye. It is not often useful, but occasionally I can see that an object is present. It's just shadow vision and only useful for very near objects. The cornea on my left eye is completely clouded over, and sometimes I wonder if the vision would be at all useful if the cornea is clear.
I am tentatively scheduled for a new surgery on my right eye on February 15. An artificial cornea has been approved for use in this country for people with a history of failed cornea transplants. The surgery is a two-stage procedure done over three months. I will be completely blind in the transplant eye for that three months because they actually use part of the white part of the eye to make a natural bandage. Then after the three months is up, they take it off and we see what I can see.
They've done only two of these artificial corneas in the state. One was for an old man who had had eight previous unsuccessful transplants. He had no vision at all before surgery and ended up having so much damage from other eye conditions that he has only light perception after surgery. The doctor seemed to think that the fact that I have some vision right now and the descriptions I gave of what I could see before my transplants failed are good signs that the artificial cornea will benefit me--and if something goes wrong they can remove it and do a typical transplant again.
Hearing loss became a significant concern in 1999. Mom and I were in a quiet restaurant, and I asked her to repeat herself and turned my head 45 degrees so that I could hear her. She, of course, noticed this and became very alarmed. That's when I had my first audiogram. I had several more over the next couple of years, and they showed that my loss was progressing. But I did not meet the criteria for Medicaid to purchase hearing aids. My loss was not severe enough.
In 1999, I got my second dog guide. A few months after I brought her home, I moved to a new apartment in a busy part of town. I discovered that I could not hear certain sounds: airplanes, some cars, the sound of my window air conditioning units that used to tell me when I was home... I could not understand a person's speech if he/she was walking ahead of me or sitting more than two seats away from me at a restaurant. An instructor from the dog guide school who works with hearing impaired students sent me a pair of reverse slope hearing aids to try--he allowed me to keep them for a year. I wore them one day when I was working at my church Vacation Bible school. I was able to focus on one child's speech and understand what she was saying, even when the lobby was filled with 250 children. I had another audiogram which showed significant improvement with the aids compared to without the aids.
I am now very uncomfortable in noisy situations, including church, restaurants, downtown areas, etc. In these environments I cannot understand speech without straining unless the person faces me directly or faces my ear from one side. I often cannot understand lyrics during worship at church, particularly if the singer is a man. I have difficulty at times hearing some musical tones as well. Unfortunately, my hearing difficulty can also be a problem when I am using synthetic speech output on a computer. In March, 2004, I was able to obtain hearing aids with the help of the state vocational rehabilitation system after writing a fairly detailed letter about how my hearing loss affected my ability to travel safely and work productively in a job setting.
I still have the migraines, and these can be more physically disabling at times than blindness is. My hearing loss becomes very significant during the first phase of a migraine, and I am unable to follow conversations in a crowd or safely judge traffic sounds. I also experience severe mood swings at the onset of the episode. Because of the muscle weakness, I may be unable to get out of a chair or off the floor independently. Dizziness interferes with my balance, and this is a problem if I bump into an object because I can lose my balance where I wouldn't otherwise. Bumping into things has always been a fact of life, but during a migraine it is a problem. A migraine can take anywhere from a few hours to three days to completely run its course. Foods tend to trigger shorter episodes--I avoid cheese, sour cream, and certain preservatives. Weather can trigger long episodes. Sensory overload can trigger very brief episodes which I can sleep off. Unfortunately, it isn't always easy to get to a place where I can do that. I remember being at a hotel once, and getting to my room meant going downstairs and crossing the street to the other hotel. I fell down the stairs and was not able to think clearly enough to break my fall. I went head first and sustained injuries to my joints, particularly my hands because I used them to break my fall.
I lived in Florida from late 2002 until hurricane Ivan came in September, 2004. During the final six months, I had migraine symptoms almost every day. The migraine frequency has improved dramatically since I've moved away from Florida; but the symptoms I'm having can still be quite severe. I have experienced some periods of something I can't quite put a term on... I'd call it disorientation, but to me disorientation is what I call it when I'm sitting at my desk typing away and suddenly feel like I am upside down, or I think a sound is coming from the left when it's really on the right or in front of me. This is different. This is a complete loss of knowledge of the environment or other bits of information that are things I consider second-nature. The episodes last only at most five minutes, but they are very frightening--mostly because I know exactly what is happening, that I am in the process of doing something I suddenly don't know how to do, that I should respond to something but don't know what to do, etc. This along with the vertigo has the potential to make life extremely difficult for me, and my mom and I have had some rather heated discussions about my
needs and care preferences in the event that the symptoms become more frequent. I get very emotional thinking about this, and on good days I worry that people with severe/permanent disabilities might think I was making something out of nothing, sort of like what I think when I hear the average person on the street talk about being afraid of being blind. I'm pretty hesitant to talk about this, sort of afraid I might offend people who already live with disabilities that limit independent self-care. But this really can be quite scary, especially because I don't really know how controllable it is. So many things influence the level of control, and some of them I can do nothing about!
I also use CPAP at night for sleep apnea. I tend to stop breathing at night, and the machine keeps air flowing through my nose and keeps my airways open so that I can breathe normally. I didn't think it was worth looking into for a long time, but it's a big relief not to need a three or four-hour nap every day. I notice that sometimes my breathing is difficult during the first phase of a migraine, and sometimes I also use the machine then because it feels like I don't have to work so hard.
I committed my life to Jesus in 1984, and even though the road has been bumpy faith has always been a significant part of my life since then. I feel like I'm not giving this part of my life much attention in this entry, but I think faith discussion will play the major role in most of my discussions here and the Christian faith is something that needs significantly less introduction for a general audience than do disabilities and how they affect me personally. I'm going to close for now, mostly because this entry has gotten quite long even for me. There are a few other background things I want to talk about, but I'm going to do them separately.