Dear Diagnosis Blogathon: A Letter to Myself

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This letter to myself, is one that could be hypothetically given to myself on that fateful day when I received the diagnosis of “narcolepsy” following a sleep study. This blog post is in response to the Dear Diagnosis Blogathon event that was created by Julie Flygare. Julie also suffers from narcolepsy and has written a fantastic memoir of narcolepsy, Wide Awake and Dreaming, which is a retelling of her own struggles throughout the early stages of narcolepsy while she was in law school. You can purchase her memoir (and I highly recommend doing so) through this link at Amazon. Also, be sure to check out the many other letters that are written (and still to come) on the Dear Diagnoisis Blogathon’s official Facebook page.

[Special mention: My cousin, Terrie Harris Benevedes’ Dear Diagnosis Blogathon letter, which speaks about her and her daughter’s diagnosis of narcolepsy is a must read. Be sure to also check out Katie Benevedes’s blog, The Blog of a Teenage Narcoleptic too.]

***

Dear Chris,

Alright bro., breathe. That’s it, just breathe for a second, there’s no need for words right now. You’re a fighter, you’re a strong person who has always fixed other people, but right now you’ve got to fix yourself and you know it. That Class A CDL Pepsi truck in the parking lot, you won’t be getting back into the driver’s seat of it to finish your route today, but you will be finishing your route from the passenger’s seat. And no, you won’t be losing your job, even though the nurse just told you that you can’t drive for the next six weeks. Just breathe man and let the anger go, it’s all going to be okay in the end.

I know you like it straight, so I’ll be forward with you – the medicine that you’re about to start taking – it isn’t the answer. In fact, over the next few years you’re going to have less issues with staying awake, yet you’re going to suffer from mind-shattering migraines and a host of other new ailments. Do you remember those moments from your childhood when you felt like your blood was about to explode with rage when things in life took a turn for the worst? My friend, that rage is about to resurface and it is going to negatively affect your job, not your driving ability, which has always been excellent. Oh, and about your motorcycle – not only will you be racing down the interstate on it in a few months, you’ll eventually find a near therapeutic sense of emotional centreing can be gained from riding when things in your head start to get too cluttered from all of the confusion that’s associated with the many symptoms of narcolepsy. And just so you know, you’ll be buying your first new bike in a few short years, but I’m getting a bit ahead of myself, eh?

It is going to get better though. I know that right in this very moment you’re not singly focusing on her, but your girlfriend that you didn’t let come with you today – the tall and beautiful brunette who is at work teaching children with special needs – well, she is about to even more so prove herself to be one of the most caring people that you’ve ever known, right there with your Mom who is standing right there beside you as your brain is swimming (screaming) with mixed emotions. Remember, somebody has to drive you to and from work for the next six weeks. And come on bro., just admit it – you’re scared to death right now! That’s why you didn’t let Kimberly come here with you today. Right now, you feel like your world is falling apart – don’t you? What you don’t realise is that your world is actually starting to take shape for the very first time in your life, right in this very moment – you just can’t see it right now.

I don’t want to spoil it for you – I know you don’t like spoiled surprises – but you’re going to get married, you’re going to (finally) learn to deal with and express your emotions, you’re going to excel in a new career path and most importantly, you’re going to start learning how to live life with opened eyes; and no, I’m not only speaking to those that are burdened by sleep. You’re going to make new friends, purchase a home and, err… okay, I’m going to spoil this one for you – you’re going to land a gig writing for the gaming industry in a few years. Yep, I think that should keep you going for awhile – eh? I would insert an emoticon here, but you wouldn’t understand what it means anyway.

Getting back to the here and now though, you’ve got a long, hard road ahead of you man. Your narcolepsy hasn’t fully unveiled itself to you just yet. You’re going to face bouts of hallucinations, sleep paralysis, cataplexy, full body weakness that can last for days, moments of even stronger daytime sleepiness and your nightmares are going to become so realistic that you will have difficulty differentiating life in this world and the one that you travel within in your dreams. I know that you’re already telling yourself that you’re going to beat this and deep down, you already know that you will. It isn’t going to be easy, the narcolepsy that you’ve just been diagnosed with is going to continue breaking you down at times, but it’s also going to shape you into an even stronger person than you already are. A multitude of bad days await you – I’m having a bit of one today as I write this very letter – yet you’ll find that it only makes the good days that much brighter. One day you will find that the curse of narcolepsy isn’t actually a curse at all, it’s a blessing; narcolepsy is the very thing that gets you up and walking down the path that God has in store for your life, with a beautiful bride grasping hold of your hand. Oh, (don’t tell her that I said this) make sure that you don’t singly focus on your own needs and lose focus that she has needs of her own – you won’t make it through the next year without her!

In time, there will be new medicatons developed and these meds will suppress many of the symptoms that you’re struggling with now, as well as those you will start to struggle with throughout the coming years. There’s a new doctor in your future as well. I wish I could tell you how to find him sooner –  it would solve many of the struggles you’re about to face – but I, of course, can’t relinquish this information because of the whole space-time continuum theory; come on, I know you like Back to the Future and I know you’ve seen what can happen when someone tries to change things in the past. Or you can just blame Albert Einstein and his theory of special relativity – that’s who I’m blaming it on at the time of writing.

In all seriousness, keep your head and faith up man. Learn to love, keep on laughing (and making others do the very same) and you best start freshening up on your grammar skills too – I know how you’ve let them become tarnished and rusty. For right now though, I want you to look down at your feet. Do you see it yet? The building didn’t actually collapse as the world inside your head came crashing down just a few moments ago. Always remember to stop and breathe when life’s crust starts to overlap and rumble beneath your feet. Earthquakes come and earthquakes pass, yet if you open your eyes you’ll see the beauty within the damage that’s left in their wake: the rebuilding of life. There are many ‘earthquakes’ ahead of you as you learn to live a life with narcolepsy, but if you get back up and rebuild in their wake, you too will find the beauty hidden within.

Look up. Do you see that door in front of you? It’s time for you to walk out of that door and into the vast world that is full of wonders and uncertainties. Be sure to give your Mom a hug, give your thanks to her for coming out of her way to be with you today and give your love to her for always being there for you. Know that there’s a life outside that door awaiting you – one that is fulfilling and worth living for. Know that the next step that you take, is the first step to a better life; all you have to do is start walking.

All the Best,

Christopher Ingram

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8 comments

  1. Wow, what a letter! I am in tears, this is beautifully written. I love how you describe getting through the lows. “A multitude of bad days await you – I’m having a bit of one today as I write this very letter – yet you’ll find that it only makes the good days that much brighter.” I’ve felt this is so true for me too. Well said! Also, describing your relationship with your mom and wife was so amazing and really pulled at my heart. Thanks again for this courageous heart-felt letter. With gratitude, Julie

    1. Thank you Julie for allowing us the chance to let our voices be heard, in the hopes that our stories might give hope to others the might be struggling with the disease.!

  2. Thanks for sharing you story Chris. I knew it was going to be a great one. You are a great writer. It’s hard to think about the struggles we go through as narcoleptics and as parents of narcoleptics. I loved reading your story. I’m thankful that God places people in our life that can help us. You inspirational words of wisdom will help those seeking answers to what is going on in their own life. Making other aware of narcolepsy is part of our journey now. Keep up the great work.

    1. Hi Terrie,

      Sorry for the late reply!

      My hope for writing this letter wasn’t to see what kind of reaction I would get for myself, but for others. Reading the other letters only reinforced my thoughts on how little attainable information there is out there for this disease and I wanted to take the first step in doing my part to change this. Narcolepsy is a frightening disease that quickly become burdened by others who find you obsessed with your disease, when you’re only trying to better understand it. In short, I covered so little in this letter and I want to cover so very much more. Me and Kimberly are already having daily discussions on me writing a memoir and what all we want to include in it – it’s most definitely going to happen.

      Thanks!

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