The Other Side of the Fence – Tesa’s Story
by Tesa Schmidt
What is narcolepsy? “It’s a sex position.” “It’s a skin disease.” “Something to do with drugs.” These are some of the answers I received when I asked my fellow college students what narcolepsy is. Though they are admittedly very interesting, they are far from the truth. According to MayoClinic.com, “narcolepsy is a chronic sleep disorder characterized by overwhelming daytime drowsiness and sudden attacks of sleep.” This is a nice, straightforward definition, but if you’re interested in learning what narcolepsy really is, read on.
I was an energetic and eager sophomore in high school when I began to fall asleep during class. It was not a really big deal at first; I have always enjoyed school and received good grades so it was just something to laugh about with my friends. Like most teenagers, I was highly involved in extracurricular activities and constantly on the go, so when I started falling asleep for long periods after school it was just due to “overwork.” That was before I began falling asleep during almost every class, despite my many desperate attempts to stay awake by hitting myself, pinching myself, sucking on sour candy, biting my tongue and anything else I could think of. I fell into a deep depression when I could not control my sleep; I felt like I was disappointing my teachers, family and friends. By the end of my sophomore year, I was sleeping through every class, coming home and falling asleep exhausted, and waking up to do the cycle all over again. In addition, I often had difficulty sleeping at night because I had ‘nightmares’ that I was paralyzed and could not move. I was extremely depressed and could barely function; my parents finally ended up pulling me out for the last two weeks of the school year.
My regular physician scheduled me for a sleep test with Cardinal Glennon Children’s Hospital in the middle of July. I underwent the normal overnight sleep test as well as the Multiple Sleep Latency Test (MSLT), which monitors daytime sleepiness. I was participating in Youth Sing Praise at Our Lady of the Snows Church when my mother called and told me I had been diagnosed with narcolepsy. I remember walking back into the practice room and looking around at everyone laughing and having a great time, and feeling completely alone. It was then that I became an adult – at age 15.
Just like with any medical specialist, it was impossible to get an appointment with a nearby sleep specialist until about two weeks before the start of my junior year. My sleep doctor explained my condition and helped me recognize the many symptoms I had been experiencing. The ‘nightmares’ I suffered are called sleep paralysis and often found in narcoleptics. Basically, with sleep paralysis the mind is awake but the body is asleep. Another symptom I had experienced slightly but had not recognized was cataplexy, which entails sudden loss of muscle tone often when experiencing a strong emotion such as excitement, laughter or anger. For example, I was walking out of a building once and was laughing a lot with my sister when I suddenly just fell to the ground. My doctor then started me on a regular sleep schedule and prescribed some medications.
The Rollercoaster Ride
I spent my “sweet” sixteenth birthday in the emergency room because I could barely walk from extreme leg cramps and dehydration caused by one of my medications. This was made even more special by the many nurses saying, “It’s your birthday? Well, happy birthday,” to make certain that I appreciated the irony and cruelty of the situation. Unfortunately, it wouldn’t be getting easier any time soon.
My junior year was marked by frequent medication changes, doctor appointments and emotional breakdowns. My school permitted students to attend field trips to the movie theater or other places during finals if they received ‘A’s both quarters. Instead of being praised for excelling despite my problems, I was not allowed to attend as penalization for missing too many days for doctor’s appointments. My doctor prescribed two daily naps for me, both during the school day, which required me to drop a chemistry course to make room for the naps. Every day I went to the nurses’ office from 10:30 to 11:00 A.M. and 1:50-2:15 P.M. and fell asleep almost immediately every time. When National Honor Society invitations went out, I did not receive one because I had not taken Chemistry due to my required naps. My pain was complete when one of my classmates informed me how lucky I was to “get” to take naps during the day and miss class. I would have traded with him in a heartbeat.
Somehow, I made it through my junior year and was finally starting to feel like I was getting my life back and coping when my doctor decided she should administer another sleep test to make certain my diagnosis was narcolepsy rather than excessive sleepiness caused by my depression. This required me to stop taking all of the medications that were starting to help combat my narcolepsy and depression for a month before the test. I was back at rock bottom.
The test results confirmed my diagnosis of narcolepsy and actually showed that it was a more severe case than originally assumed. I began taking my medication again and continued seeing a counselor. Perhaps the most important and beneficial change was that my high school allowed me to come in at 8:30 instead of 7:30 A.M., which made it possible for me to make it through the school day without needing a nap, although I definitely needed one right after school! I finally received my driver’s license in March 2006 at age 17; I had needed the doctor’s approval to take driver’s education and receive my permit and license. It was a long and difficult road, but by the grace of God and with the help of my family and friends, I was able to persevere to where and who I am today.
Life with Narcolepsy
About 1 in 2,000 people suffer from narcolepsy in the United States. It is a condition that affects every aspect of life. It certainly is not something that I am looking forward to putting on my job resume or car or health insurance! I had wanted to be an elementary school librarian, but realized I needed a job with more flexibility so I could fit in my naps and work on my own sleep schedule. I cannot pull an “all-nighter” and be able to function the rest of the week, let alone the next day. I cannot have a roommate because of my daily naps and strict sleep schedule. An all-day trip to the St. Louis Zoo or Six Flags? Only if I can take naps in the car when needed. What about a mission trip to Guatemala or another country, where you are working all day far away from your lodgings? I participated as a New Student Orientation leader this year, and had to miss some of the training and events to take my naps and stay on a decent sleep schedule. I still struggle with doing what I need to for something like NSO out of fear of someone seeing me as ‘using my disability’ to ‘get out’ of work or other events. It is often difficult for people to understand the magnitude of a disease or disorder such as narcolepsy, but I hope this article helps you to remember to ‘step into the other person’s shoes’ before judging them. If you learn one thing from this article, let it be to never tell someone with a disease or disability that they are lucky: no matter how much work they ‘get out of’ or supposed ‘benefits’ they have, the normal life looks like heaven from this side of the fence.