The Questions Everyone Is Afraid To Ask

In late May of 2018, I was diagnosed with Narcolepsy with Cataplexy.

I chose to keep quiet about it because I was still learning what that meant for my life, both at the current moment and for the remaining time I have. Now that this has been announced on social media, I have been flooded with questions. So, what is Narcolepsy? Right off the bat I’ll tell you there isn’t a whole lot known, and I don’t have the energy to explain everything again, so here is a helpful link.

How am I doing? What is it like? How do I hold on? I’ve been keeping a journal of sorts recording my  honest thoughts on this whole mess. Included below is a sample of some of the entries:

August 24th, 2018 “Appearances”

People treat me differently when I’m in a wheelchair. That’s not really surprising but I didn’t think about it until it started happening. There’s three reactions, the first is to ignore me. I get it, that’s what I did before. We all know it’s rude to stare so we made an effort to look away. It’s like being invisible. Or….having people pretend you are invisible. The second reaction is to be overly nice, it’s that customer service smile and unnatural voice paired with overly expressive eyebrows and a tinge of pity. This one is frustrating, if you are capable of being nice to strangers, why does it take a wheelchair to trigger that behavior? Do you think I need it? The third reaction is suspicion. I’m young, I look healthy, and I can walk from the chair to the car. Lots of times I can walk without the chair at all. The thing about wheelchairs or motorized carts is, at first, they seem fun. Zooming around the aisles and always having a seat wherever you go, but after about 30 seconds you realize you’ve hit top speed and everything feels slower when people are staring. You run into old friends who just give you a sad look and make forced small talk that is more painful because you can’t even pretend things are good. The comments flit around your head as you pass, you’d think the rumbling engine and obnoxious beeping would be enough to drown out the whispers, “She’s so young…” “What a shame.” “Does she need that?” Sigh. I know, I’m 17 and my mom drives me everywhere and I need a babysitter 24/7. You know what’s harder to swallow than that? It’s the leak in my potential supply. An unlimited tank with a hole in the bottom that I’m trying to plug with hope but we all know how that goes.

September 3rd, 2018 “Hallucinations”

I’m used to leading because I’ve led an army of demons my whole life. The uprisings only anger me. I am a force of  nature, choking them out without blinking. Because that’s what I’ve always done. If you take a seven year old and lock her in a room with grotesque men and eerie women and dismembered body parts, do you think she would break? Or tame the  beast? People think I’m sweet and quiet and innocent and they have no idea what I can do. The power I wield is as strong as ever. There isn’t another word to describe me. Powerful. That’s it, the most accurate. I command the fear, I stare into the face of the worst things my mind can spit out and I don’t  blink. You think you’re scared just hearing about it? When you live with ghosts they don’t  matter anymore. Yes, I know them. But they know me. They know that I endure. I can break over and over and be on my knees screaming and I still won’t  quit. Why? Because of pride, I guess. I will not lose to you. Or pain. Or the monsters.

September 8th, 2018 “Wrong”

I’m wrong.

I’m in the wrong family, the wrong state, the wrong planet.

I grew up staring into corners during recess to see if that man would hurt anyone.

I grew up sleeping 15 hours straight because my imagination can build worlds that I can feel, smell, touch, hear, and fit into. I stayed because the pain I felt there was my choice.

My teachers telling others students to see if I’m drooling.

I grew up sobbing at the mere mention of sleeping because that meant they would come back to whip me again, to hurt me again, to scream in my face again. They told me I was lazy. That naps that long and that often are an excuse. But I didn’t understand. I didn’t choose to nap. I didn’t want to be asleep. I didn’t want to visit my captors. But everyday my body slammed a fist down on the big red stop button before I could fall to my knees and beg her to let me stay. Before I could grab her shoulders and shake and sob because there are no words to tell her how much I couldn’t do it.

It sounds dramatic because it is. Because it is a big deal.

So while the other kids laughed and ran and watched movies and grew up, I made a habit of holding a fist behind my back because I was so scared someone or something would stab me. I’m scared. I grew up in a constant state of fear.

September 14th, 2018 “Rest”

My therapist asked me what I do to let myself have a break. My gut reaction was to say sleep, but I didn’t because that isn’t really true. Sleep is as stressful and draining as being awake is, at least when I’m awake I can be on medication. So I shrugged and said I don’t know, maybe I don’t have any time that I get a break, I mean, no matter who I am or what I am doing I will always have Narcolepsy. It is always a balance between wanting to let myself rest and being safe. How do I get out without being a burden? I mean, there isn’t really a way, I just have to trust in the people that love me. I have to trust that I’m worth it to them. I like to think the pain and exhaustion isn’t showing on my face, but according to some it is. I can’t find a song for how I’m feeling. I’m feeling like I need a break. Not really a break from having Narcolepsy, because that would be leaving behind a part of who I am. I need a break from dealing with Narcolepsy. It’s the checking the time and when do I need to take my next dose and do I have it with me? Am I in a place where someone will call 911 if I have Cataplexy? I’m the crazy one. I know, but, why do you care? I’m sick of fighting sleep and fighting wakefulness and the crushing fear of what if. I’m sick of Narcolepsy drawing boxes for my life to fit into. I’m in charge. Well, I’m supposed to be.

October 14th, 2018 “Rehearsed”

Over and over again I explain the two types. I press forward with my speech despite the shock in their eyes. I answer questions. I mean, it’s great, I’m happy people are learning about it but I’m tired. Tired of explaining, tired of doubt, tired of being told I’m strong. What is there to say to that? Thanks? It’s an awkward end to the conversation, and I’m not strong because I have Narcolepsy, I’m strong despite it. I’m active, kind, smart, brave, funny, alive despite it.

November 15th 2018 “Scared”

I’m scared. I feel silly because all of my fears are so cliché. I’m scared of what  will happen in the future, I’m scared of a million what if’s. The questions that everyone is afraid to ask. I want to trust my body again. I want to feel safe again. I’m scared I’ll never be anything. That I’ll never do anything with this journal, or with Narcolepsy in general.

November 20th, 2018 “The Look In Their Eyes”

It’s fuzzy. Blurry. Stoney, but in a sad way. People look at me and I see their questions. They want to know what it’s like, they want to ask things they shouldn’t. It’s the opposite of looking away too quickly. They latch onto me as I walk away, as I turn away, as I break the contact.  I feel faded. I feel like my heart has stopped. I’m exiting a movie theater and hearing the dialog fade. You wanna know what it feels like? It feels like silent crying and cracked smiles. It feels like shattered glass and tasteless air. It feels like hunger that won’t be filled.

If you’ve made it this far, thank you. I am filled with anticipation to see where this trial will take me, how it will enable me to help people. To those of you who felt familiar with anything in these entries, I hope there is a bit of comfort in knowing you aren’t alone, and that peace can still be felt. The very first entry I wrote ended with the same sentiment I want to conclude with today:

So what can I do with the potential I have left? That is the question, I suppose. I’m starting by writing this because whether I’m the only one who reads this a few months from now as I’m looking through old files, or by some miracle, this journal gets spread to other people who just might want to laugh and cry and heal and break with me, getting it out is the first step.