My Wild Life 

By G. Process

This the story of my life. It has been a bit of a wild ride right from the beginning, so I'll start there! I was born on a very hot day forty some years ago in the Midwest. Everyone told my mother that it was too hot to have a baby but there is was anyway. My mother said I had thick black hair and the doctors said I was very "blue", and that I didn't breathe on my own for ten minutes after I was born. I also developed severe jaundice from an RH blood incompatibility and they almost had to do a blood transfusion, but they didn't because I got better. So although I had some problems getting here, I did arrive and everything seemed to be O.K. until one year later. 

When I was one year old I contracted meningitis (a severe brain infection) that is very serious, especially in children. It is an infection of the covering of the brain. The doctors said I came within one half hour of dying before they figured out what was wrong with me, and then I was rushed to the hospital, and I stayed there for two weeks. At first the doctors didn't think they could save me, but once again I rallied and survived. My mother said that after I had gotten through the worst of it I seemed to be O.K. but it took me a whole year to recover. The doctors were happy that I didn't have any damage to my hearing and my sight, but they couldn't see what damage had been done because it was deep inside my brain. As I was growing up I knew that something was very wrong but I didn't know what, and it was so subtle that no one else knew either. My mother said that I was very passive as a toddler and that I liked to sit on the floor in one spot and play by myself most of the time. She said my illness seemed to have taken a lot out of me. I remember being happy outdoors, collecting bugs and studying them. So everything was O.K. until I started school. 

My kindergarten teacher was concerned about me because a I didn't want to participate in games or songs, and I seemed younger than the other kids; they complained because I acted babyish. I remember enjoying watching plants grow and seeing caterpillars come out of cocoons. I also liked the art projects we did because we could be messy. So school wasn't too bad until I got to first grade. I don't remember much about that time, and what I do remember wasn't good. I started grade school at a catholic school and the nuns didn't know what to make of me. I was very scared of them, probably because of the black habits! They were puzzled by my severe lack of ability in math and my above average ability in reading and writing. They said I seemed to be physically frail and weak, and they questioned the care I was receiving at home. They didn't understand why I couldn't seem to stop daydreaming and pay attention. They told my mother that they thought I was retarded and that I needed help. Things continued going downhill from there until they punished me for not being able to finish my work assignments (it was very hard for me to write with a pencil). I then convinced my mother to transfer me to a public school and things got a lot better.

One of my strongest memories from that time was of wondering what in the world could be wrong and not knowing what to do about it. My school records said that the teachers thought I was lazy and that it took me an extraordinary amount of time to finish my written assignments, and they also noticed that I was extremely distractible. I remember that they said I "shouldn't" be having these problems (presumably because I was smart in other areas). Math continued to be a major problem for me because I had trouble understanding the concepts and memorizing my multiplications tables. I did love to read though, so I spent most of my time with my nose in a book. I hated gym class because I couldn't keep up with the other kids and I was always getting hurt, sometimes because I would believe anything that anybody said and would do anything they wanted me to do whether or not it was good for me. I preferred solitary quiet activities where I could think. 

So I got through grade school all right and I was  very well behaved so no one investigated my problems any further. My fifth grade teacher said that some day someone would find a way to open up my mind (they were apparently having trouble "getting through" to me) so I could learn, but no one knew how to do that then, so I got along as best I could. All I knew was that I had a very hard time with anything that was technical, and I preferred the peace and quiet of the outdoors to anything else. 

Junior high and high school were much the same. I attended an alternative school because it was thought that I would do better in smaller classes. Contrary to popular belief, alternative schools are not only for "bad kids"! I did enjoy the smaller classes and I was able to spend most of my time reading again, (the teachers commented that I was very withdrawn) so that was O.K. I also attended a regular high school for a few classes, so I didn't miss out on that experience entirely. I made few friends in high school but I was not a joiner. I preferred the company of animals and I especially liked horses, so I would visit the local stable as often as I could and I remember those times as being some of the happiest of my life.

So I worked hard in school but wasn't able to graduate with my class because of my trouble with math. I had to make up some math credits and attend summer school, but eventually I did graduate and I was happy to be free of school, but I didn't have any idea of what I should do next. I considered going to college but I wasn't sure what I wanted to study so I decided to try to work first. I didn't have any idea of how difficult that was going to be, but I soon found out. 

I had tried to work when I was sixteen but it was a disaster and it didn't last long because I had lots of trouble learning procedures, working a cash register (making correct change) and serving customers. I was very upset when that job ended but I still didn't know what was wrong and I thought the next job would be better; I was wrong. I kept trying to work because that was what everyone else did and I was very eager to be independent. Learning to drive was another major challenge, but I managed somehow and I thought I was on the road to independence; I had no idea of how many pot holes I was headed for on the road of experience. I didn't know how serious my learning problems were and how working would bring that out. 

People who knew me then said they had never seen anyone who tried as hard to get and keep a job as I did, but my superhuman efforts were mostly in vain. I shouldn't have been used to working twice as hard to get half as far from my school experiences, but I wasn't. My spirits sank a little lower every time I lost a job because of my performance problems and my friends and family listened patiently while I cried and tried to explain what had happened, but they couldn't help me either. I began to suspect that I had learning disabilities, and I had been tested, but the tests were inconclusive. I knew that I had trouble with math and anything technical and I thought I could just work around it; I was wrong. I was eligible for state division of rehabilitation help, but they didn't what to do either. 

Over the years I tried every job I could think of, including greenhouse labor (I was too slow and physically in-coordinated); factory work ( I couldn't learn how to run the machines); office work, working as a naturalist ( I wasn't able to attend to details); child care (I had trouble controlling the children and paying attention to what was going on around me); plant care (I got lost a lot while I was driving the route); health care (my personality was wrong for the job and I wasn't creative enough); newspaper reporting ( It was very hard for me to take notes accurately) and a number of other jobs that went nowhere because I couldn't get through the training requirements. I also attended two years of technical school and four years of college but when I graduated I found that it was very difficult to apply my "book learning" to a job. I found the difference between school and work was vast, and I couldn't bridge it. 

Finally, I was successful in a very slow paced job that didn't have any demands for production, speed and/or efficiency. I worked part time at a natural history museum as a security guard for seven years and I was able to sustain myself minimally. While I was there I continued to look for more interesting work and I tried a number of other jobs but they didn't work out and was fortunately able to go back to working there, but I was getting pretty bored walking thought the same exhibit halls day after day, so I kept looking. 

By this time I had been all over the united states looking for work and I had hundreds of interviews that didn't work out (my lack of ability to read body language may have had something to with that) but I had gotten nowhere and I was still trying to figure out what was going on. I had some more neuropsychiatric testing done and they said I had learning disabilities but they weren't sure what kind they were, so I kept looking for answers. I also tried to get a promotion to a better job in the company that I was working for but the training program proved to be way too much for me ( I wasn't able to memorize all the materials and learn many things at once in a very noisy and chaotic environment) and I left the program after the stress became extreme and my supervisor said I was the slowest learner they had ever tried to teach, so I went back to working part time and wondering. Seventy five percent of my work time was down time then, so I had a lot of time to think.

I was finally working at very slow paced job. I began working full time at this same job after I had to leave a job in child care because I had inadvertently caused a child to be hurt when I wasn't able to pay attention, and his father threatened to sue the company. So I began working full time patrolling the exhibit halls of the natural history museum. Most of my time there was "down time" because our main job is just to be there in case something happens. That was O.K. except that it could get excruciatingly boring when not much was going on.

So I spent a lot more time pondering my future and wondering what to do next. I finally got some very thorough neuropsychiatric testing and it gave me a better idea of why I had had so much trouble holding a job. I was diagnosed with nonverbal learning disabilities caused by diffuse and chronic right sided brain dysfunction. I was also told that I had mild cerebral palsy because of the stiffness in my limbs, tremors in my body, and balance and coordination problems that I had always had (they were also so subtle that I knew they were there but I didn't investigate them until I was older). It was felt at the time that some or all of these problems were caused by the illnesses I had as an infant, but no one knew that for sure. The doctors said that all I needed to know was that these problems were not my fault, and I appreciated that but I needed to know more! So I continued my search for information.

Information on the usual types of learning disabilities was fairly easy to find, although most of the books were for parents of children who had language problems, and information on NLD itself was very scarce. I then consulted approximately one dozen other professionals (I left no stone unturned!) in various fields (mostly neuropsychiatry) and I got a better idea of what I was dealing with.

After they told me I wouldn't be able to do anything technical or mentally challenging though, I wasn't so sure I wanted to know any more! They also told me it would be extremely difficult for me to work, but I knew that already. It did help to know that my biggest problems are cognitive, which includes understanding abstract concepts and problem solving ( that explains my  trouble with math!) as well as sustaining attention for long periods of time. I'm also not sure that I wanted to hear that I could expect to be bored with what I could do because I was very bright in other ways, but there it was. The only career advice they could give me was that I should find some interesting volunteer work because I wasn't going to find fulfillment in paid work. I knew that I had what is called "imprisoned intelligence" so I understood what they were saying (it's like having a really nice car to drive but you don't have the keys so you can't use it!), but it didn't make it any easier to accept. I had enough evidence from my job experiences to know
that they weren't totally wrong.

So I worked full time until my stamina began to run out when I reached middle age. I had to cut back on my work hours after the forty plus hours of walking and standing that I was doing per week started to cause me severe back pain and muscle fatigue. Several people had suggested that I apply for government social security benefits before, but I hadn't because I knew they were extremely difficult to get because my conditions weren't well known or well understood. I had tried to get help from many of the agencies that were there for disabled people, but they had so many clients and so little money that they were reluctant to try. It seems that the fact that I speak well and look "normal" makes it hard to understand the seriousness of my problems, and I am in that in-between category of disability that usually makes me "fall through the cracks" of most service providers.

The fact that I had been able to do the work I could do also worked against me in some ways. But I thought I better apply for the government help anyway because my job wouldn't last forever and chances of finding another that I could be successful at were very slim. So I found a social worker to help me with the mountains of red tape and paperwork that the application consisted of and I lived on less than $500.OO a month for six months while I waited for the decision. I tried to answer all their questions as best I could (mostly they wanted documentation on every doctors appointment I've had for the last ten years!) and I filled out the paperwork that never seemed to stop coming even after I had finished the original application. Finally, in January of this year I was successful. I am now receiving SSDI and medicaid, and I'm still working although it is now mostly sitting at a desk monitoring the comings and goings of the crowds and answering simple questions.

My daily struggles include trying hard to understand what people are telling me and often failing. I get confused and flustered very easily and that cause lots of stress. New situations are always hairy, as is trying to find my way while driving (a constant challenge!). Trying to keep track of my finances is very difficult also, along with staying organized and paying attention. I deal everyday with spatial problems, social misinterpretation, memory problems, anxiety, fatigue and pain and I make lot's of mistakes as well but I try not to feel too bad because I know so many others have worse problems than mine.

I try to keep an "attitude of gratitude" because I know I have been blessed in many ways and I have some very supportive people in my life. I try to have lot's of patience with people who tell me my problems are imaginary, (I can't imagine going through all this voluntarily!) and those who get angry with me for making mistakes because I know that they don't understand the situation. I know that I'll never be a star at work, but I also know that that is not the most important thing in life. I know I am an honest, kind and decent human being and I am an excellent friend and that's all that should matter. I hope that my story helps others, and I try to do as much as I can to help others everyday because I know that's what I'm here for, and I'm good at that!