Losing Well Part 3

Continuation of my series Losing Well. Part 1 can be found here.


   I threw myself into my new job as an IT consultant. I was working long hours and  didn’t get to see my wife much. This was probably good for our relationship. At least at first. I was having increasing problems driving at night and this did cause some stress between us. After a year of consulting, I was hired to work for a bank in their IT department. She was excited about my new job because it meant stability. She wanted to stay at home and have kids.  
    Late that spring, I went to the an optometrist to get a new prescription. My wife was sick of my complaining about not wanting to drive at night. So I explained to the doctor that I had problems driving after sunset. I also told him how I tripped a lot and couldn’t find things that I had just set down. The doctor had me take a visual fields test. The test was easy enough. I looked at a blank screen and whenever a flash of light appeared, I just had to push a button.
    At first, I thought the machine was malfunctioning. I didn’t see any lights flash for the first couple of minutes. Finally, after about ten minutes and a handful of button pushes, the computer evaluating my performance stopped the test. The computer thought I was lying. I was below it's level of peripheral vision measurability. At first I thought it was a software bug. That’s something that I could understand. The doctor had me retake the test.
    By this time, the practice had closed and the doctor was acting nervous. He’d dilated my eyes several times and the sun had set. I was fearful of the drive home. The doctor pulled out his old college textbook and handed it to me. He told me that I had an eye disease of the retina, retinitis pigmentosa. The disease had no treatment or cure and it was probably going to lead to blindness.
    I thanked the doctor and went to my car. I was numb. I called my wife. I told her that I probably needed to stop driving. Her reaction was to get angry at me. She told me that since there was nothing I could do about the eye disease, I shouldn’t change my life. I should just keep doing what I’d been doing. I thought this was preposterous. I didn’t realize it at the time but finding out about RP would destroy my life.

Part 4 can be found here. 

Losing Well Part 2

Continuation of my series, Losing Well. Part 1 can be found here.

    High school was a horrible time for me. My Mom remarried and we moved to a new state. I lost all my old friends and I didn’t get along with my my Step-Dad. My family didn’t have money and I went to a school were that was important. I eventually graduated in the bottom 25% of my class. I hated the industrial school system. I couldn’t thrive in that style of learning environment. After graduating, I had nothing else to do, so I enrolled in my local community college.
    What I loved about college was that the classes were usually smaller and when they weren’t, I could make appointments with the instructors. As an incoming Freshman, the school gave me a reading test. I scored above college graduate. And before my Freshman year was over I’d made the President’s List; straight A’s. My Mother was thrilled that I’d proved my old grade school wrong.           After proving myself, I was accepted by the local state university. After graduating with a two year degree, I moved into the dorms on campus as a Junior. I loved living away from my family and everything seemed to fall into place. I joined the debate team, I was elected to serve on student government and worked five on campus jobs. I had lots of friends and in my off time even went to class.
    My grades suffered compared to community college but I learned how to cram effectively. This allowed me maximum flexibility while keeping adequate grades. When I aced final exams, my professors often told me they were surprised at how well I’d done because they had low expectations for me. I’d explain to them that my classes were playing second fiddle to my life.     
    While at school, I met a girl and fell in love. It wasn’t a healthy relationship. I’d witnessed no healthy relationships to emulate. I didn’t have much knowledge of how relationships should play out. Even so, I should have figured out that it wasn’t going to work and moved on. I didn’t and she became a huge part of my story.
    I graduated in the May and got married in June. I didn’t have a job. I was twenty-two years old. Some part of me knew that my marriage wasn’t going to work. But getting married seemed like a better idea than moving back in with my Step-Dad.  
    My first job out of college was work at a grocery store. The work was hard and unfulfilling. I was just trying to make some cash while I was looking for a career. I moved on from the grocery store to selling TV’s at a local retail store. Then I finally got a “real” job working at a finance company. The wages were horrible and the job was mostly collections. I hated it.
    After six months, the finance company let me go. While I hated the job it was a blow to the ego to fail. The old grocery store chain I’d worked for rehired me. I was set to start work there the following week. That’s when I saw a want ad in the paper for a software tester. No one in the tech industry wanted to do software testing. But to me that sounded great. I went down the to the temp agency and they had me take some computer literacy tests. I passed and they setup an interview. I did well and was offered a temp to perm job making eight dollars and hour.
    It was my first real break. I was working for a company that made fuel pumps. I was testing to make sure that customers could pay at the pump. I loved it. I was always thinking of new and creative ways to break the software. It turned out I was a good systems analyst. I used these skills to convince the company to convert me from temp to perm. Which they did for nine dollars an hour.  
    For the next year and half I was a lab rat. I spent my days testing pumps and making credit cards. I setup computers to monitor other computers. I crawled around hooking up machines with wires all over the floor. It was really a paid internship. I was being taught how to become a software tester. This experience was more valuable than my college degree.
    In the late 1990’s, IT was going through a bubble. Everyone with degrees or experience was running off to Silicon Valley to find their fortune. This left people like me to scoop up their now empty jobs. After working in IT for a year and half, a friend suggested I look for a new job. So I put my first resume on the internet. The level of interest surprised me. I had a phone interview and landed my first consulting job. It paid fifty thousand dollars a year. I was in disbelief.

Part 3 can be found here. 

Losing Well Part 1

   This is my story. Like all stories, it has a plot. The plot is driven by retinitis pigemtosa, a degenerative eye disease. This the narrative of a how a disease drove and changed me. Is still changing me. 

    I was a sickly child. I suffered from both mumps and chickenpox before the age of three. My first signs of visual impairment also occurred at this age. I ran in front of my brother on the swings and got kicked in head. Not long after that incident, my parents realized that my right eye was "lazy." 
    Amblyopia is a common childhood disease that even in the 1970's was fixed with surgery. So I went under the knife.The surgeon pulled my right eye straight and patched my left, stronger, eye. Only when they took the patch off my left eye, it had turned out as well. So I had to go under again to have my left eye fixed. The surgeries were failures and my eyes continue to be cross-eyed. 
    Six was a tough age for me.  I got my first pair of glasses. I hated wearing them and often wouldn’t. In first grade this would hurt my ability to keep up with my classmates. By the end of second grade my school had a meeting with my Mother and told her that I was mentally challenged and would never read. My Mother pointed to the IQ test the school and given me as evidence that they just couldn’t figure out how to teach me.
    Over the summer, Mom sent me to a tutor and by the end of the break I was reading above grade level. This was a pattern I’d see the rest of my academic career. I did poorly at school but would test well. I did poorly in large classes but did well with individual instruction.
    Outside of school, my family convinced me to join the swim team. I did well in the pool and by age eight my freestyle medley team went undefeated. By the time I was nine, my age group wasn’t competing until after sunset. I started developing problems. I couldn’t see the wall of the pool. I did great in practice but choked in swim meets. My confidence fell. I didn’t understand what was going on. I’d do better if there was a light on my lane but it wasn’t always lucky enough to get that worked out right. And I didn’t want to tell anyone that I couldn’t see. That was my last year of swimming.
    My family was aware that I had vision issues. My night blindness was obvious early on. Everyone just thought I had bad eyes. I had an astigmatism that kept my eyes from correcting to 20/20. Everyone thought my problems were caused by my lack of acuity and the failed eye surgeries. They were mistaken. I was starting to not trust myself to make decisions. I couldn’t figure out what the issue was. I just knew something was wrong. 

Part 2 can be found here.
   

Silence As Victory

So I've been on private long term disability insurance for several years. I'm also on government disability. The government has been chill. They haven't gone out of their way to make my life hard. My private insurance company has been making me jump through hoops. They've treated me like I'm trying to defraud them. They've been so horrible it makes me wonder if they ever pay out. I'd love to see the percentages.

For years I've been doing tasks the insurance company assigned me. But for the first time I don't have any outstanding hurdles. They sent me to the State blind services a few months back hoping to get confirmation that I should go work at a menial job. The State disagreed and, at least of right now, the insurance company has no plan for me.

I assume my insurance company is regrouping for another angle. Or they've given up fighting? Hard to believe that. But it's not like they'll call to tell me I've beaten them. It's been a month since they called. Maybe silence is victory. 

College Updates

So, as I've been explaining, I've been offered a scholarship to go back to college but I have to be a full time student and start in January. I have a degree from twenty years ago. This time around I'm disabled due to visual impairment.

That's the background, here's the latest updates. 

I'm booked for 7 credit hours and I need to be in 12. Since the university waived my general education requirements, I only have major classes to book. But most of the classes I need to take are entry level for my major and already full. My adviser appealed and got me into 2 classes but so far the appeals haven't worked on any of the other classes.

The interesting question here is, will the State still pay for me to go even if I'm not full time? Is the State flexible enough to let me go to school without being full time? I doubt it. I suspect they'd pay for me to go to classes that aren't required for my degree. But I have yet to ask them. Giving my adviser a shot of getting me in to a couple of classes.

The State made me apply for financial aid, which I was just awarded. My university has given me the option of 5k in student loans per semester. What's odd about that is that it includes room and board expenses. The school has me listed as an adult/off campus student. Typical bureaucracy, doesn't even know what it already knows.  I'm not accepting, of course. If the choice was debt or no degree, I'd stick with no degree.  

In order to qualify with the disability services on campus, they need a form from my doctor. My doctor's office has said he's working on it but still no paperwork. No one has the same sense of urgency that I have. I want to get my books and get versions I can read from disability services. But I can't.

I'm considering getting some reading glasses made. I won't be able to read super well with them but it will help me in labs were I might not have any other way of viewing information.

I need to book a trip back from school using special transportation to see how that goes and how far they'll take me. Waiting to have a real reason to go to campus first.

The Murkly World

My Long Term Disability insurance company wants me to go back to work. They suggested I do what is considered "under employment" for someone with my resume. I thought this was a transparent plan to make me voluntarily opt out of the policy (due to object misery). The insurance company sent to the State for an evaluation, hoping this would force me to make that decision. As I've documented earlier, the State didn't like the insurance company's plan and suggested I go back to college instead. Which I'm planning on doing.

I recently had a conversation with my "employer" (they don't pay me anymore, their insurance company does) of over a decade. They told me that I'm still employed and that I can be fired for violations of the handbook. I asked them if I'm allowed to seek other employment and they said that I wasn't. I pointed out to them that their insurance company was telling me I had to. My employer had never heard of that before and their first reaction was that I shouldn't seek other employment. They then spent two weeks researching. They came back to tell me that since it's the insurance company who's paying me, I have to do what they want me to.

I post this to show that, once again, there is no set process. My employer had no idea what their insurance company was doing. Private disability insurance is a murky world with now set rules. It's all a negotiation. Usually this works in favor of the insurance company. Those of us with real disabilities have to figure out how to turn the murky world they've built to our advantage.

It's Complicated

Going back to college is a complicated business. It's a massive project. Submitting the application was the easiest part. The State is willing to pay for me to go back to school as long as I'm a full time student (12 hours or more) and I have a decision on financial aid.

Booking 12 hours is harder than I expected. I have a college degree from the university I'm going back to. This means they waived all my general education requirements. That means I don't need to take filler elective classes. Yeah! But in my major, I'm a freshman because I haven't taken any of the prerequisites. The end result is I can't sign up for the majority of classes in my major until I get take the base level courses. And they're all booked for the spring semester!

It's a perfect storm of suck. My long suffering adviser has been helping me petition professors to get into their classes. So far I'm up to 7 credit hours. The State won't give me any money until I can show them a schedule with 12. I want to buy my books and start trying to read them but not until I know I can expense them. I can't read them either. I need help from disability services for that. To work with disability services, I've sent a form to my eye doctor to prove to the college that I should get their services. Until then they won't even meet with me. The request has been sent but no progress.

On the transportation front,  I've worked out a ride to the school. I live outside of the city limits so the city special transportation won't pick me up.  I think the city will bring me home, at least part way. I won't know how far the city will take me until I actually try to book a trip.

On the financial aid front, my request has been submitted and acknowledged but no word. I just need a response. Deny me or accept me, just give me an answer!

There are a lot of moving parts here. A lot to go wrong. But I'm hopeful it will all work out before January.