Narcolepsy Diagnosis Letter

So lately I’ve been having second thoughts on whether or not to keep this blog or just let it die. I guess my decision for the moment is to let it be, as I DO need a place in which to vent my mind.

Below is an extract of the entry I wrote for the “Dear Diagnosis Blogathon” launched by Narcolepsy Advocate Julie Flygare. To view the original entry, go to my Tumblr post. Basically, it is meant as a letter written by “current me” to myself, back in time, on the day of my diagnosis… this is definitely one of the most personal things I have ever written.


I know this is a great day for you, FINALLY getting to know that what you have, what you’ve been struggling with, what you’ve been suffering, is the very same think your mom was diagnosed less than a year ago, Narcolepsy. What a relief, huh? To know that at least she is able to understand you, because she is dealing with the very same disorder…

Unfortunately for you, my dearest friend, this is nothing but the tip of the iceberg. I know how you feel right now, after all those years of being incredibly tired, of driving in “automatic mode”. Remember all that engineer at the University who called you “dazed”, or the Physics teacher who used to slap the desk with a wooden rule to wake you up? … I know, right now you’re thinking “that’s it! Now I know! Thank God!”. My love, that’s nothing… trust me. I don’t want to scare you, but hey, we’re Taurus here. Therefore, I do want you to know where we’re about to be standing.

For the first months, you’ll feel great. You will still be sleepy and all, but you’ll feel the help of the Modafinil and the naps. However, on the 20th of August, you’ll have an extremely scary experience. You’ll wake up in an Intensive Care Unit. Your mom and your aunt will be infinitely scared. The doctors will not understand you. Please forgive them, they just don’t know. Even your mom will believe you might have ingested some kind of drug like cocaine or, yes that thing you tried twice in High school, Marijuana. Your aunt too.

Again, please, from the bottom of my heart, I ask you. Please forgive them, they just will not know that this is only the beginning of the downward spiral for you. On the following Sunday, it will happen. That thing you’ve always dreaded for years. The fear that made you drink up to 4 to 7 expressos a day, will happen. Out of ignorance, your mom and aunt will try to persuade you to look forward with optimistic eyes, but you will be so tired that you’ll just fall off, like a puppet doll, like a teddy bear…

You won’t be injured, though. You’ll just end up laying in your bed. It will be the most frightening, saddest, powerless experience you’ve even been through, and that includes the time when you and your now-ex-girlfriend (sorry about that, forgot about the spoiler alert ._.) were robbed along with your friends. You’ll try to move, and you won’t be able to. You’ll try to talk, and you’ll just mumble. You will even try to blink, but your eyelids won’t lift. My love, I’m so sorry to tell you this, but it will be your very first Cataplexy episode.

By now, I know you’re scared shitless, and it’s OK. Actually, as I’m writing this letter, my eyes have indeed become teary. Don’t be afraid. Believe it or not, after this first episode, there will be more. Up until right now, you’ve had probably 4 more episodes (hey, we’re bad at counting right?). Each of them will be less scary than the previous one. And… let me tell you… After those 3 weeks of being in-and-out of the hospital, you will not be the same person. You will not be the same man you are right now. You’ll be beautiful. You’ll be kind. You have no fucking idea of how this will transform you.

Please excuse my tears again. It’s just that, just by remembering, my heart is rejoiced since the transformation you will suffer will make you an incredibly precious gemstone. Your soul will shine with the Power that comes from Above, from God. People you don’t even know will care for you, wait.. not care, they will fucking love you my dearest dear.

Remember the Anime Convention you and your mates from Anime Kudasai prepared for June 1st and 2nd? It will be great. Also the one for July 20th and 21st. Unfortunately, my love, those will be the last ones you’ll attend, in the meantime before you unite with me in the unimaginable, unbelievable distance of Time.

You will, of course, suffer a lot. First, it will be your interpersonal relationships, some of them will be split completely, since at the moment we cannot drive. We just can’t. We’re not strong enough. We’re not awake enough. Please don’t be afraid. A lot will change. Remember those endless headaches from childhood? They will come back. Oh my, they will indeed come back, stronger, more painful than ever. You’ll see yourself taking some painkillers that I know you cannot even envision taking or needing. Those migraines will be like hell. They still are… Remember your Modafinil? The little pills you by now love… You’ll hate them. You’ll even try to avoid taking them… but please, don’t worry too much.

Right now, there is still no solution to those migraines, but don’t worry. Help is on the way. Dr. Díaz has been the kindest ever, but even he will refer you to someone else. Remember Dr. Cosenza? The Sleep Specialist who runs the Sleep Clinic in which you got tested? We’re back with him for now. He’s experimenting with some other medications to ease the excruciating pain we’re suffering right now. But don’t be afraid, God will put His Hand on Dr. Cosenza’s head and illuminate him. When? I don’t know.. But I know it will be soon.

Remember, Jesus of Nazareth did not die in the Cross in vain. He suffered the greatest torments for every one, including both of us. We need to rely on Him now. Remember the passage of the Garden of Gethsemane? He being God, asked the Father “My Father, if it be possible, let this cup pass from me; nevertheless, not as I will, but as You will”… I wish I could tell you things are better now, but we’re not the diamond or the gemstone yet. So, right now, we need to rely on Our Father’s Holy Will to be done.

I love you. You’re my greatest treasure. You’re my greatest pride. Even though your physical strength will decline greatly. Even though your drive for doing things and your lust for life will be lost. I love you with all my heart, with all my body, and with all my soul. You and I are the same, in different spots in the line of time, of course, but WE ARE ONE. My Love, don’t give up. I know I won’t.



<( ^-^ )>



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