I've been ignoring this for 25 years

I have had Narcolepsy 2 ever since I was a small child. I knew I was different in regards to sleep, than my siblings. I could not stay up late. I remember a conversation with my mother early in the morning one day while she was ironing. She told me I was going to school next year when I was 5 years old. I already knew at that young age that my sleep requirements could be a problem for me at a place that would require me to remain awake the entire time, so I immediately had some trepidation about school. When small, I would sometimes fall asleep on the swing set, or wake up in the grass of the yard. I was also known for crazy things done while sleep walking, and long naps. I immediately asked her if they took naps at school. She said yes, and I was somewhat relieved.

When my mother asked me about school. I replied I did not like it at all. I had taught my myself to read when I was 4 years old, by studying letters and words, asking my mother about things like silent letters, suffixes added to different words, past and present tense, etc., until I read at a very high level. I told my mother, they had no books at school, and they didn't even know how to take naps there ( at home, mine would be a couple of hours ). I said it was boring. I asked when I could read books, and she said she thought reading was taught in the second grade. I know basic math and fractions. I asked her learning numbers. She said first grade, she thought. A proposal popped into my head. I said it would be better for me, If I just could stay home, and start school in the second grade. When that proposal did not fly, I knew I was sentenced to doing the whole stretch of time I had been sentenced to, fighting off falling asleep in a huge time void of boredom. I was terrified.

I was deathly afraid of having to repeat any school. My young logic told me I had to fight the sleepiness full time because I was determined not to add any time to my sentence. On standardized tests like Iowa Basic Skills, in grad school, I consistently rand in the 96th - 98th and answering every question, even though I had been to my score would be higher by skipping a question instead of answering with an educated guess. I ignored that, as I knew my success leaned heavily on my reading ability, and using context to logically pick the choice indicated by context, etc. At the same time, I was not awake enough to learn things by listening. My mother had to have conferences with my teacher because, " I did participate, and I did not apply myself ". I understood the teacher speak for " lazy quitter ". I knew how difficult it was for me to simply stay awake every day, time seeming to perpetually pass more and more slowly.

This beginning for me, would naturally affect the course of my entire life. After a time in college, I admitted I was different than other people, and they retained and understood information that I did not. I studied professors and registered for classes with the ones that did not take roll, and did not use books they had written as information for their lectures. I quit attending class. Even so, I could not tilt everything in my favor, and still was giving up things, like homework credit, attendance, etc. The ideal class for me was one that did not involve checking attendance, with a single text book. I had a friend in an elective communications. That class, had one text, and no attendance. Sometime, later he asked me what kind of a grade I got. I answered an "A" . He then asked "How many times did you go to class ? " I answered 3 tests and a final, 4 times why ? He said " when you handed in your final, he looked up your name to see if you were in his class ". I adjusted my life goal before I graduated. It sounds low to most people, but now I set the bar to achieve the goal of living like a normal person: A wife, a family, a home, etc.

So I graduated with a degree, but grades that did not give me the credentials to stand out. I did not know what my condition was specifically, but I did know it was a very real and serious condition. I had decided that whatever it was, if it had a name and I was diagnosed, I did not want it on my medical record. I had eliminated obvious careers that I would not, and should not have. I was concerned that the condition may eventually prevent me from driving. I will powered my way through life. I worked for people that were less capable than myself. I got diagnosed with narcolepsy in my early 60's . I was flat worn out, and began having a few life impacting issues that were serious, such as a couple of "mini strokes". I had spent every day of 60+ years, forcing myself to do a long string of things in a fatigued state, I really did not want to do. I had realized at a very young age that people would formulate an opinion of me, on partial information. If they didn't dike me, I didn't care. That's life. People that know me well, are aware of things that make me different. These people are obviously very important to me.

I said ALL OF THAT, to say this. It is a long tough road along years of sleep deprivation managed or partly managed with willpower, and or, denial. I know, what is above, is surely a long way to make a point. I also know decades strung together, is tough. One thing about all of this, that I DON'T do, is look back and play the ultimate question mental game "What would I have accomplished without Narcolepsy ?". That's a fantasy, not reality. The one question reality game, I do play mentally is, " What would it have been like, if I had asked for concessions back when maybe I could have, or should have ? ", I'm glad things turned out so well for the OP, because my overthinking says, I'm glad his employer is so considerate and it turned out well.

Still awaiting assessment, and for Ehlers Danlos now - funny how odd quicks turn out not to be when taken as a whole. Work are fine with me just shouting it from the rooftops and blanking in out in lectures - big plus of academia I guess

Welcome to the community, Ian. I'm glad you found us and I'm really glad that your employer is understanding now that you have a diagnosis. Sometimes it takes a serious incident like that to pull us out of the thinking we've been conditioned to for so long. For my father, it was a fall at work that finally led to his MS diagnosis after 40 years of symptoms. His employer wouldn't let him return without a CAT scan.
Are you now on a good treatment plan?
- Lori (Team Member)