Today is World Narcolepsy Day (22 September 2020).
Narcolepsy is a chronic sleep disorder characterized by overwhelming daytime drowsiness and sudden attacks of sleep. People with narcolepsy often find it difficult to stay awake for long periods of time, regardless of the circumstances. Source: Mayo Clinic
Below is my personal story which I would like to share to raise awareness on this day. My story is one of grace and learning each passing day. My struggle with Narcolepsy is one that has taught me to be more patient with those around me.
My first contact with the ‘monster’ , that I can vividly remember was one evening, at the age of 11. I had come home quite tired from school and overwhelmed. All I remember is going to the washroom, the next thing I know there was a loud knock on the toilet door and my mother calling out my name. I honestly cannot remember how long I had been asleep seated on the toilet seat. I got up, dressed, flushed and opened the door. What even surprised me more, was finding my parents at the door with such a worried look on their faces. ” How could I even explain I had fallen asleep in the toilet?”
Of course I was punished for this unruly behavior. I never thought much about it. That incidence was followed by frequent sleep attacks in class. I could no longer keep my eyes open, especially during afternoon lessons. At home, things were no different, I would doze off eating, watching TV, cuddling my baby sister to sleep. I never really thought much about what was happening, and it never bothered me so much until I started high school.
This is where all hell broke loose and my self – esteem plunged! I could barely keep awake especially during lessons that involved lectures. More often than not, my notes looked scribbled despite having good handwriting (when awake of course)! Every new teacher who came in, would have to be briefed by my class teacher about me. My sitting position was constantly at the front row. The one and only complaint my parents got during academic day, was of me dozing off in class, it was so common that even when a teacher forgot to mention, I remember them asking, “And she doesn’t sleep in your class?”
The subject that had the least complaints of my sleeping concern was the Maths class, which I now understand it’s because its practical and involving. This was a big motivation for me, and it soon became the best subject and the top performing.
The ridicule in class was one I couldn’t really take in sometimes, and I would often ask myself so many questions. I remember being asked why I was always sleeping during class and prep times, and I would just say it’s a medical condition, just to avoid the discussion but to be honest, I didn’t have the slightest idea which problem it was. One of my memorable desk mates, sadly had the task of nudging me, when I fell asleep, she would gently shake me or hit my elbow when she caught me sleeping. And for that, I am so grateful.
My worst moments? I got into class leadership as a Class Monitor, within the first week of Form 1. Unfortunately, politics always gets in the way. I remember at some point my classmates collecting signatures to have me demoted or as we could say now ‘impeached’, reason being, I was always asleep in class and hence not a good example as a leader. It’s quite funny and interesting, that I never saw the signatures doing rounds in class, I only came to know about it, after the list was taken to the class teacher and a friend actually mentioned that there was a list going around with a call for signatures but she had refused to sign it, and from some discussions in class I could tell it was true.
I must say, my class teachers were among the few gracious teachers I ever met in my life journey. They never at any point, made me feel less of a student or even consider the signature collection that had taken place. So this bold move silenced the politics at the time, but definitely the wounds in me never healed.
I would doze off in class, during the laboratory practical lessons, during prep times. Basically, in most places. I had to learn to study independently to catch up on what I had missed. Interestingly however, during lessons, even when I was dozing off, I could still manage to partially follow through with my brain awake, but my body half asleep (again I was not in control). It’s all by God’s grace, that this never became a limitation to my success, I completed high school and actually passed with an A- and an A in Maths.
In church, so many times I would be tapped on the shoulder to stay awake. It’s been my habit to always take notes in such lecturers and the preachings to keep myself awake. But sometimes I just couldn’t help it. Often my mother would sit a row immediately behind me and would tap my seat or tap my shoulder. Not once, did I hear people talking about how deep asleep I was during a church service or a prayer service even while standing (which I still don’t understand how that happens).
My dating life was not been spared either. I cannot count the number of times I have dozed off while having a night call. At times, I am so excited to have that long phone call, but 4 minutes into it, I am gone. It takes a selfless person not to interpret this as lack of interest, and I am happy that is not a concern anymore.
Fast-forward to my career, it was evident once again that there was something not right about me. I struggled to stay awake at my desk or during meetings. Many a time, I would try to tap my foot on the floor helplessly to stay awake which would often not work, as I would get startled by a tap on my back or my pen dropping, and I sadly wouldn’t know for how long I had been sleeping. I remember getting comments like, “why do you look so tired in the morning?” I wish I knew!!! The situation was worse when I had to multi-task work and doing my Masters course-work. I could barely keep up!!
It is at the point, when I was feeling so frustrated with myself and questioning my sanity, that I decided to do some online research to understand what was going on. That is when I came across, that Eureka moment, this ‘monster’ actually had a name, NARCOLEPSY! Looking at the symptoms and stories of narcoleptic patients, I had never felt so understood.
Finally, everything started to make sense, and finally there was hope! That was the beginning of my healing, as I began accepting and embracing the situation. By the grace of God, I managed to share with my boss then, who was so gracious and actually pointed out that she understood. She even helped me come up with coping strategies like getting out of my desk in intervals, ensuring that my sugar levels were optimum for energy purposes etc. She is indeed, heaven-sent and I am eternally grateful.
Currently, I am not under medication (which are lifetime) , but have managed to have natural remedies that keep me going. I have also joined a group – Narcolepsy Family Moja, that makes me realize it is manageable. Yes, it has been painful and heartbreaking growing up and getting punished for something you don’t understand. But that’s where the price of lack of knowledge comes in.
There are two types of Narcolepsy – Narcolepsy with Cataplexy, (this is a case which involves loss of voluntary muscle control triggered by strong emotion) and Narcolepsy without Cataplexy (which is my case). Feel free to read more here – https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Narcolepsy-Fact-Sheet
But why can’t one catch themselves falling asleep?
You know the worst part is, unlike ‘normal’ people who can feel themselves dozing off. Narcoleptics don’t feel it coming and when they do, it’s often a bit too late when the body is in the REM cycle. You could try to get up, but your muscles are stuck, you can’t lift your hand let alone your legs until the cycle is over, hence helpless. I cannot count the number of times I have tried to get up from the desk, when I feel it coming, but I cannot.
Is one born with it? I honestly don’t know much about that, but research says that most people are diagnosed at the age of teenage hood. In my case, I first saw the signs at the onset of teenage years. But ofcourse lack of prior knowledge by myself, my parents or teachers made it difficult to get a timely diagnosis.
Can one live a normal life? Lets think about it like any other condition like Asthma or Heart disease, unless it’s an extreme case, most people live normal lives cognizant of their condition and aware of the triggers. In the same way, Narcoleptics can and should live normal lives without any form of discrimination – performing day to day tasks unless it’s extreme and one cannot drive long distance or operate machinery. But otherwise, yes, one can and should live a normal life.
How can we help people in our circles with Narcolepsy? Be kind and gracious – like any other disease or inability, Narcoleptics need a lot of patience. Shouting or calling out someone who is dozing off, will not keep them awake, instead it leads to embarrassment and frustration.
- Give the person time off – Narcoleptics only need a few minutes nap (15 – 30 minutes) to re-charge. This is the best drug, and if they don’t get it, then nothing productive will be done.
- Don’t discriminate – Love and acceptance by those around you is critical, and rebuilds self – esteem. There are students who are so bright, but because they cannot keep awake, they have been condemned to think they are stupid. They just need to feel understood and this will bring out the best in them.
Finally, knowledge is critical, and I wish we could all create awareness this day, as we celebrate World Narcolepsy Day. A life, a soul could be renewed, and someone’s esteem could be reinstated. By Mercy Karumba
Photo Credit – https://www.slideshare.net/malman2011/narcolepsy-15903186