I have already told you about my hospitalization in Sharm el Sheikh and my sense of bewilderment while I was in bed, connected to a thousand threads, feeling tiny in my Mickey Mouse shirt.
Those who know me personally know that “tiny” is not exactly the way I am usually described … I am 1.76 tall and I am not exactly thin… however that was the way I felt.
Small and afraid, like a little girl before an important test.
What does Mickey Mouse’s shirt have to do with it?
Well… she is the co-protagonist of this story.
I’m used to prepare suitcases, which I bring with me on my many trips, and to do so I rely on my own logic:
– clothes for job occasions
– evening dresses
– casual clothes
– hideous clothes
Yes… in each suitcase there has to be at least one item of clothing, strictly horrendous, for each day.
Simple! When I’m alone in the hotel room, working on the PC analyzing data, or studying for the next speech, I want to take care only of me and what I’m doing, effectively destroying any attempt to interact with the external world.
How could I go out with a horrendous T-shirt, with the risk of meeting collaborators or colleagues?
And above all, in moments of mental fatigue, I can look in the mirror and smile, always wondering what I had in mind when I decided to spend money on such a horrible clothes.
This helps me to refocus and get back to what I have to do.
Obviously this does not apply when
I am with my partner.
Absurd? I realize this, but I stopped long ago to wonder if something is absurd or not, in favor of what works for me.
Here… the Mickey Mouse shirt belongs to the category “hideous clothes”.
Tucked in a suitcase to be worn only in the room, I hadn’t planned to be rushed to the clinic.
So, what had to be my way of staying with me suddenly became visible to everyone.
And that shirt became the banner of my efforts to get diagnosed with narcolepsy.
Yes … because from that day in intensive care, that shirt was promoted: from “hideous clothing” to “hideous clothing, with a meaning”.
So, it was quite natural for me to put it in my suitcase to accompany me in a new hospitalization, the one that was decisive for being able to give a name to what had always happened to me, but only in the last few months had started to ruin my life.
For the time in the clinic I had brought very nice “hospital clothes”, nothing that made one think of the disease, only leggings, sweatshirts and cute T-shirts.
The inevitable strange socks (yes, I like strange socks, if they are polka dots better), and the inevitable horrendous T-shirt. The one of Sharm, the Mickey Mouse T-Shirt.
What better occasion to wear it, if not during the night examination that would finally give a name to my disease.
At 5 pm on that Monday afternoon, two people arrived in my room: a doctor and her young intern.
Both were very kind, they explained to me what was the exam I was going to undergo that night: polysomnography.
It’s a simultaneous study of multiple physiological parameters during sleep, to evaluate the physiological and pathological phenomena that may occur while sleeping.
It’s a non-invasive examination, but that transforms you for a few hours into a sort of being to be studied, connected to a thousand cables, which are connected to cups attached to the scalp, and to many transmitters positioned near the eyes, on the jaws, on the chest and on the legs.
After almost an hour spent being measured and gluing cables to the body, I stood with my partner looking at me, a little incredulous but so hopeful that all that work would tell me that I was not wrong, that the video I had seen about Narcolepsy was precisely the description of my life in recent months.
My Mickey Mouse T-shirt had been chosen to accompany me on that very important night, it was my dress at the rookie ball, my lucky charm after I had passed the hospitalization in Sharm with her and started to cure my heart issue.
And she was absolutely up to it: tightened to the right point not to hinder the doctor’s work, but not too much to be an obstacle.
Horrendous at the right point to make everyone smile.
Dear enough to move on to a new category when, in the morning, the neurologist informed me that we would have to wait for the outcome of the polysomnography to have an official diagnosis but that, looking at the moments when I fell asleep, it was clear that the diagnosis was exactly what we expected: narcolepsy with cataplexy.
Mickey Mouse’s t-shirt had, therefore, passed to the category of “lucky charms”.
This is how MY Mickey Mouse shirt had taught me a great thing: not everything that is born as bad is really bad and stays like that forever.
Just like Narcolepsy: what scared me and made my days different, classified as “bad” or “limiting” by everyone, today is my new life.
Today I went to another category, the one of people who have decided to become someone’s lucky charm, instead of remaining in the category of “those who have had a bad thing”.
And I will be, giving you a shot of me with my Mickey Mouse T-shirt, just before I found out that I was right, and she had really brought me luck.