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My life with narcolepsy

Filed in
  • Narcolepsy
  • Patient stories

By Norman Adams  |  Jul 20, 2017
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During my first 15 years of life, I was a hyperactive child. I was always mischievous, a standout athlete, but a very poor student. I lacked focus and often blurted out ridiculous statements. My report cards always had the comment, “Norman is very smart but rarely applies himself.” The real problem, I learned at age 55, was that I had attention deficit disorder (ADD), which made reading retention almost impossible.

At about age 15 a new symptom started to rear its ugly head, although I tried to use it to my advantage. I had a one-hour bus ride to high school. I found I could fall asleep almost instantly while riding the bus and wake up seconds before I had to get off. I just thought I was tired, and this new talent allowed me to get the sleep that my body wanted.

The first time I became aware of my sleepiness in class was as a junior in high school.

My teacher slapped me awake in English class. In my senior year I had another intolerant teacher who thought it would be a good lesson to everyone in the class to come up behind me, put his hand in my collar, twist it and choke me so badly that I could not talk or breathe.

In college, falling asleep became a bigger problem. I had to travel several hours to school, and when I drove I experienced dreadful periods of sleepiness behind the wheel. On many occasions I pulled over and took a nap. I fell asleep in most large classes and began asking friends to take notes for me. My grades were still poor, and I was unable to return to school after two years as I did not meet their standards for grade point average. I was told to find another school or join the army.

After college I fell in love, got married and began my first full-time job as an engineering technician. It turned out to be a perfect fit for me. In the winter I worked in a lab by myself, and in the summer I sat out on construction sites testing soil compaction and sleeping in my car, where I could take cat naps all day long. My next job was learning to design and program computers. I had my own office and could take my cat naps as needed.

It wasn’t until I had my first programming job with a big corporation that my sleepiness began to be noticed more often, and it became a problem immediately. I was called into Human Resources and told I was on 90-day notice to ship up or find another job. Thank God I had a relative in upper management, who I am sure saved my bacon. After a few years, management realized that my ability to program and design systems was more valuable than my daily sleepiness.

At age 25 I experienced three minor auto accidents. At that point I realized that I needed to see a doctor and find out what was going on before I drove into a telephone pole and killed myself or another person.

I was referred to a neurologist who sent me for a brain wave test.

Following the test, I was diagnosed with narcolepsy. In 1969 very little was known about narcolepsy, and doctors estimated that about 250,000 people in the United States had it. Over the course of a few years, I was prescribed two different medications, but I didn’t like how they made me feel.

In the early 1970s, my life took a huge turn. I was offered a position with a large company in upstate New York, where I felt that an experience like this meant future success for my programming and computer design career. For the next 12 years I worked many hours of overtime, created numerous systems for a Fortune 100 company, and had little if any concern with my sleeping problems at work. My managers were very pleased with my work and assumed my sleeping habits were due to the long hours I was putting in. I still had to be aware of my sleepiness, and on numerous occasions I would have to pull over and take a nap even in the 35-minute ride home.

After leaving that company, I took another very big risk and joined a software company as a consultant. This meant that my daily sleepiness was going to be under scrutiny at every company I consulted with. I always explained my condition to the hiring manager and asked if they could put me in a private setting where I could avoid contact with other employees. I would guarantee that the quality of my work would justify their consulting fee. Most of the time it worked, but on a few jobs it did not.

For the rest of my working career, I struggled with acceptance and understanding until the Americans with Disabilities Act became law in 1990. I never knew how my employers would deal with my daytime sleepiness. I think it would be better if narcolepsy was explained like being in a trance, and people in that state can solve problems, have dreams, or be so deep they can be sitting in row two at the philharmonic symphony and never hear a thing.

I can remember falling into narcoleptic sleep attacks and feeling like I was coming out of a fog. I didn’t know who I was or where I was, and I certainly never felt rested.

My family and friends tried to deal with my narcolepsy, but I know it was not easy. My second spouse had a very hard time dealing with it and complained throughout our 17 years of marriage. She was a therapist and had a very powerful sense about people. I remember the first time we went on a long drive, and I started to feel the sleepiness that comes with the start of a sleep attack. She immediately turned to me and said, “Are you getting sleepy?” So I told her I was. She was the first person who was ever able to sense my sleepiness. She said it felt like a dimmer switch, a sudden loss of energy. From that day on I never worried about my driving with her, as she would always take over and drive if she felt that drop in my energy.

I am in my 70s now and retired. I still struggle with daytime sleepiness, but now it has become an asset to be able to take a nap at will.

One thing most people do not realize about having narcolepsy is how vulnerable it feels to fall asleep alone in a public venue.

I learned to laugh about it, but I can imagine that other people who have narcolepsy could struggle with this vulnerability, and that it could develop into a serious fear.

My suggestion for living with narcolepsy is to try to face it with humor, rely on support from others who care, and try to develop some areas where you can use narcolepsy to your advantage (like sleeping at a bad movie or a boring party, or when your spouse starts lecturing you). Try to help others develop a better understanding of your condition. Last but not least, if you believe in a higher creative power, trust in it to protect you.

Connect with Norman at normjadams@aol.com. To share your story of how you have learned to live with a sleep disorder, contact us at media@aasmnet.org.


3 Comments

  1. 1 Marty 29 Nov
    My sleep doctor prescribed Xyrem which is specifically for narcolepsy. It has been miraculous for me. I used to have horrible insomnia in addition to daytime sleepiness and all that comes with it. Now I sleep at night and my days are awake and focused. 
  2. 2 Becca 11 Sep
    Your reflection gives me a sense of hope.
    I am trying to find a job as I went through a life change and have been out of the work force now for 8 years.
    I was always a nap taker growing up but didn't develop actual symptoms of narcolepsy until after my son was born, 6 years ago. At first, my doc told me it was being a new mom. They blamed it on weight gain from being pregnant. I lost weight and then dotors felt it was an additional symptom from anxiety Ive had my entire life, even after it had been in control for years prior to my onset of symptoms. I was tested, scanned, and talked to so many times I startwd to think maybe it was something I had to snap out of. I was in the best shape of my life, trying to cure myself of what the docs said was just normal tired. The thing was, Id work out and fal asleep during yoga or cool down. Dealing with extreme fatigue, the sudden onset of what I refer to as drunk tired or the moments I would be driving and realize I fell asleep and panic because I had no idea how I drove without knowing I had fallen asleep.
    After a year and a half an experience of sleep paralysis and an onset of severe shaking following the new experience had my doctor ordering another scan to make sure it wasnt a seizure or other neuro episode. The very smart neurologist said, it sounds like sleep paralysis, have you seen a sleep specialist? Your symptoms sound like hypersomnia or narcolepsy.
    The rest is history.
    The hard part right now even after this amount of time, is that Im not tired due to depression, lack of sleep, lazy, lack of vitamins or food allergies. My thyrid amd hormones are fine.
    I don't enjoy explaining anything anymore and usually dont want to as folks either think Im looking for sympathy or say, oh yea.. I get tired sometimes too or worse look at me as if I made it up..
    Truth of it, I just get embarrassed when I slurr words or forget things or when tasks take 2 days instead of a couple hours because I have to take breaks and either try to wake up or just give in and nap, though naps are the choice Ive learned are the best route.
    When applying for jobs, I worry when it says fast paced. I finished ny associates degree but am concerned that a career change may be unavoidable in order to be successful.
    Thanks again for your reflection, it gives me hope in working with this condition and being effective.
  3. 3 Bobbie 27 Jul
    Thank you so much!  I was always told that I was just lazy and when I started have the dreams and not being able to wake up I thought I was going crazy. I never told anyone not even the man I was married to. Then one night I saw a commercial on tv and thought that sounds just like me. So I have had a sleep study and have been told at 57 years old I have Narcolepsy.  My coworkers are always kidding me about being able to sleep anywhere!!

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