Like all “strange” things, telling my typical day to those who don’t know me can really raise many questions, some of which are really comical.
It’s in fact common for people to ask for information, as detailed as possible, on some very private aspects of my life.
So I have decided to disclose some curiosities and give way to those who don’t know me to better understand how normal things are experienced with Narcolepsy.
I will report below some of the more “particular” questions I have been asked, so we can laugh and learn together to understand how “I work”.
“…what if you fall asleep on the toilet?”
Good question … at first I would answer that it would be a shitty nap, but if I had to give a serious answer I would say that yes, it happened and when I woke up I had the donut mark on the legs for a while. Nothing extraordinary… the positive thing is that when I woke up I was already there to pee.
“… have you ever fallen asleep eating?”
Yes, it happened to me several times, with the risk of choking.
I collected a series of funny anecdotes, such as falling asleep with my face in a plate of blue cheese dumplings that, obviously, remained stuck on eyelashes and eyebrows making me look like Santa Claus.
Or while I was eating hazelnuts, thanks to the intervention of my partner who put his fingers in my mouth to extract them I didn’t choke.
When it happens, sometimes, I continue to chew even while sleeping. It is called automatic movement: I am not aware of it, but I continue to do what I was doing at the time of falling asleep.
“What if you fall asleep in the restaurant?”
Usually, I always warn the staff about my condition and since I’m accompanied to the restaurant, whoever is with me takes care not to let me end up on the plate.
My partner brings his chair closer to me and makes me lean on his shoulder, so that we look like two young lovers on their first date.
Obviously, choosing a somewhat secluded table helps.
“But if you fall asleep when you are standing?”
It happens to fall asleep when standing, maybe while I put the key to open the front door: usually my head “falls” because of cataplexy and it may be that someone sees me standing with my head resting on the door, helpless.
On the other hand, in moments of strong emotion my legs often collapse and I fall asleep.
In this case cataplexy also acts on the legs, causing me to end up on the ground.
Once, I fell asleep while walking to an underground parking lot to pick up the car; my partner literally caught me on the fly and dragged me to the car. A tourist, a foreigner, seeing Fabio dragging me and trying to get me in the car started screaming, probably thinking of some kind of violence, approaching threateningly.
Fortunately Fabio managed to explain him that I’m narcoleptic, so the tourist helped him to get me in the car.
Poor guy… besides a narcoleptic girlfriend he was also risking to get into trouble!
“If you fall asleep in a shop? How do you do?”
Well… if I fall asleep in a shop it means that I’m accompanied, therefore whoever is with me can explain what happens and stay by my side until I wake up.
In reality nothing happens, just don’t touch me, don’t get scared and let me wake up.
Sure… maybe I’ll lose my place in line at the checkout …
“So are you a disabled person?”
The delicacy of this question came as a punch in the face but it makes sense: narcoleptics, in fact, can request civil disability if the disease causes a reduction in working capacity of more than 33%.
It’s not easy for a narcoleptic to obtain a disability pension, but it’s a possibility that many people with this condition are not aware of.
If you visit the AIN website, you can find all the info about it.
“Are people around you ashamed to go out with you?”
“With me, no … with you for sure” … That’s how I wanted to answer, but I understand that not everyone can fully comprehend the words love, friendship and values.
They should be asked if they are ashamed.
Of course, surely they would prefer me to be well but for me and the people I love it’s normal that I can suddenly fall asleep and we know that every day out can turn into an adventure.
Shame should be felt by those who treat the sick as second-class people, to be ashamed of.
And then… I don’t smell, I don’t get anything dirty and I don’t disturb. At most I snore …
“Does it happen even while?! …”
Here’s the real question: if your partner is not narcoleptic and when you go to bed he pretends to sleep, who has a problem?
If it were to happen to me it would only be the consequence of a spiteful illness.
But I know that when I wake up I could still get back to it …
These questions, all of them, are a symptom of curiosity and it’s good to generate curiosity towards a rare disease.
Only in this way we can hope in the research for better therapies and faster diagnoses.
I like to joke about my condition and my “narcoleptic adventures” and it’s a pleasure to answer the questions of those who meet me and want to understand.
Just make sure (and this applies to everyone) to ask sensible questions, without implied judgments or hoping to get an answer which satisfies only your itches, because in that case sleeping doesn’t mean dumb and sick doesn’t mean unfortunate.
We are the same, all human beings with their own headache, all on the same train, each with his own ticket.
For some people, like me, the ticket is more expensive and makes you travel a little uncomfortable … but if you face the journey with the right attitude and the right people next to it, it becomes the journey of luck.
So … long live the felt and useful questions, which I love to answer and that make me feel useful.
To those not quite elegant, not for content but for attitude, I will respond with a smile and move on … and if I fall asleep on my way out, always remember that Sleeping Beauty was a princess.