Family: Like that’s a real thing

The decision to sell my horses is a huge, heart breaking decision. My family knows how much my horses mean to me, at least I would hope they do. However, all they see is how expensive they are and how silly it is that I would think I’d be able to go anywhere with horseback riding and competing. They made that clear whenever I thought I might succeed and I shared my hopes with them.

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My family never supported my desire to ride, sure they provided what money they could so I could take lessons and own a horse. However, my dream of being the best rider possible was ludicrous to them. I’ve worked at horses barns since I was 12 to pay for my horses’ board. I had to put my first horse down when I was 13. My mom says it was one of the worst days of her life but Maggie meant nothing to her. Honestly, I don’t understand why my mother would say it was one of the worst days of her life unless she was talking about how costly it was to put Maggie down. I couldn’t talk about Maggie for close to ten years. I just don’t even know anymore.

My dreams of competing were over before I had a chance to dream of being the best. We were poor and my mother was too busy to be there when I needed her. All she saw was that I wanted to be around animals that were expensive and smelly. She made attempts to help out but they were half hearted attempts and when she was there I knew she wanted to be somewhere else. Whenever I wanted to show off my riding skills, my family just looked at me like ok, cool so why are you riding? To them I was a black sheep; I was being ridiculous in my desire to compete because if I was sensible I would give up riding and live a quiet life. Which leads me to why I’m writing this.

Dreams Come True
This is me on my Trakehner mare, Julie, and my dream foal, Fae.

My aunt texted me to see if we could meet up I told her no, I’m selling my horses. I also said no because I’m not doing well health wise, which is true. My narcolepsy is bad. I push myself during the week and then spend the weekends sleeping and trying to recharge. Which is why I haven’t seen my horses in several weeks. I’m so exhausted and overwhelmed that I just can’t even see them. I’ve failed myself and I’ve failed them. My aunt’s response to my text saying I can’t hang out and I’m selling my horses was ‘I’m sorry you had to make that decision but you have to think of you first. When you are feeling better let’s hang out.’ All I have to say to that was thanks for nothing. Thanks for proving to me why I don’t want to hang out with you.

Ok, am I just an idiot? Do I have a bizarre conception of family? Because that response was not at all what I would have expected. Where is the what can I do to help? Let’s sit down and figure this out. What other options do you have? Nothing, but oh good, thank you for becoming sensible. This is just another example of the truth that my family doesn’t want me to succeed. They think that I’m an idiot, that I’m wasting my life away. How can you succeed when you have no one in your court? How can you win a battle when you are alone on the field? Whatever happened to family sticking by your side through thick and thin?

I know of parents putting a second mortgage on their house to support their daughter’s dream of riding and competing. I know of parents who bought books and watched videos to understand what riding was about and to learn more about the sport so that they could help their child succeed. Those parents aren’t mine. Sure, my family gave me money when they could but the support and the cheer squad, well, my dreams were too much of an inconvenience for them.

Here’s the crazy thing- they try to get me to like what they are doing but why would I show any interest or support when I’ve been taught that no one cares? For as long as I can remember my family has wanted me to enjoy what they are doing but I’m the flipping kid. I’m the one who is supposed to be cheered on. Why am I going to be interested in what they like if they aren’t interested in what I’ve dreamed of doing since I was little?


Part 2:

My second big dream was to be a writer. I wanted to write lots of stories and I talked about how I wanted to write to my family. This was during high school. They said they’d love to read what I wrote but when I sent it to them they were offended and I pretty much decided then and there that I won’t ever share my stories again. Why should I share what I write when no one cares? Not even my family. People wonder why the world is effed up? It’s because we have no sense of family. Everyone is out to take care of themselves.

The only one who responded to what I wrote in a constructive way was my uncle’s ex-wife. My Aunt Karen, who made an effort to ride with me and to hang out with me and to give me the thumbs up. She supported me and made an effort to get to know me. Except, at that point in my life I was so used to being brushed aside that I didn’t recognize what she was doing. I just brushed her interest aside as she was only doing that because she had to.

I’ve created a lot of stories and blogs but I’ve hidden them from my family; when my mother tries to friend me on facebook or read my blogs I don’t like it and I stop sharing what I write. My family has let me down so often and in so many ways that I just can’t deal with their paltry attempts to get to know me. They are twenty seven years too late.

I wanted to share riding with my family but they didn’t want to be a part of it. So, I went on to writing and being more introverted but even then, my family didn’t approve. I wrote with passion and I wrote about how I viewed the world in a fictional sense and I was chided for what I wrote.  They love me I know, they were only doing what they thought they should. Except, they just taught me I wasn’t special. I was nothing because I wasn’t doing what I should be doing.

Now, I have my eight to six job and I’m starting to “do things right”. They ask me how I’m doing, they ask me if anything is new. I say nope, the same old, same old. Right now, they all think I should be dating and married and planning for kids. That is what is right and proper. I refuse to be a part of the cycle of disinterest. I will not date nor will I have kids because I’m too messed up and I don’t want to spread the poison. My family taught me to stop dreaming, hoping and believing in something more. Not on purpose, no they didn’t do it on purpose, which I think is what hurts the most.


Part 3:

From 2013 to now I’ve been struggling. I lost my step father to cancer two weeks after I graduated college (2012) which I didn’t even deal with. I was working full time and true to how I grew up I just moved on without caring. My family all wanted me to show how sad I was, to let go of my feelings but no, they don’t get to share in those feelings. They don’t deserve to know me.  Sorry, back to the point.

I bred Julie for a foal, with the money I received from my step dad’s passing. It was a difficult pregnancy and by the spring of 2013 I was quite certain I was going to lose both Julie and Fae. So, I bought a horse from auction with the intention of training and reselling her. She ended up having cancer and I got overwhelmed and quit my job and spiraled down into debt. Yea, I knew I had narcolepsy at the time but no one gets what narcolepsy is. No one understands what is like to live in constant sleep deprivation. No one gets how much that sleep deprivation messes you up. So, overwhelmed, sleep deprived and stressed about losing all three horses I fell into debt.

I wrote about it on I’m not sure if I left the posts up there. This post is not about that part of my life but I want to set the stage for what I’m about to write. Flash forward to spring 2014. I send Lexy (cancer rescue horse) to a rescue and I’m working several jobs to keep Julie and Fae. A friend of mine lets me live at her place but again I didn’t understand why she was being nice or showing that she cared and I feel bad about that.

Summer 2014 I moved back home because I got a full time job and my mom let me live with her but she made it clear that she really didn’t want me there. In her mind I should have sold the horses and used the money I was spending on them to pay for an apartment. Probably deep down she hoped I would find a guy so that I would be his problem instead of hers.

October 2014: I was driving to work when some idiot pulled out around a trash truck and into my lane. I remember seeing his headlights and being confused. I swerved and missed hitting him head on; part of me wonders what would have happened if I’d stayed in my lane. After the whole incident I remember coming to and thinking I was in an accident. Everyone drove on by, no one stopped or asked if I was OK. The driver of the truck and trailer only stopped because his trailer was off kilter.

His trailer totaled my car. I was out of it and kept saying it was my fault. I remember walking around and the police officer telling me to get out of the road. When I tried calling my mom to ask her for help she didn’t answer. When I called my brother he didn’t answer. The only person who answered was the barn owner where I kept the horses. She picked me up and drove me to work. I worked the whole flipping day. Even though I was out of it and pretty much walking around in circles. The barn owner offered to take me to the hospital but she was the only one who offered to help. At the end of the work day my mom made a huge deal out of having to come and pick me up. She never asked if I was ok or what happened.

She didn’t care. The fact that I was in a car accident was an inconvenience to her. Just another mess up. She didn’t offer to help me find a new car or anything. I was on my own, sure I acted like I was OK but that is what I was taught to do since I was a child. She wonders why I don’t want to see her or why I don’t ask for help? It’s because whenever I do she makes it clear I shouldn’t need help. That I shouldn’t need to ask for anything. I’ve glossed over a lot of the finer details because I wanted to make sure to get to the point. Family doesn’t exist. Family only judges, belittles and teaches you to fight for yourself. I’ve had people help me and offer me assistance but their interest in my life was so foreign that I just brushed it aside because I didn’t know how to handle it.

I don’t blame my family as their history is why they are the way they are. I just wish I wasn’t the one who had to deal with all of this. To look around and make the decisions I do. Knowledge is power and Knowledge is destruction.


When to cut losses

There are times when you have to look around you and say, is this what I want? Today, I did that. I made a choice and I have to live with it. My health isn’t what it needs to be. I cannot fulfill the goal I set so long ago. I will never compete at the highest level of dressage. So, I have to let go. I’ve worked so hard for my dreams, I sacrificed so much and now, making this choice, I’m so numb. This numbness has been building for years. I don’t know why I thought there would be any other outcome besides this one.

There are the masters, the heros and then there are the peons. The ones who are meaningless cogs in the machine; replaceable and easy to forget. For years I tried to convince myself that I was more than just a peon. I fought to live in a world I had no business being in. So, I give up. I am done with fighting. I’m done with believing I am anything more than a peon.

I choose to fail. I choose to walk away from everything because no matter how hard I fight, no matter what I sacrifice, the truth is that I’ll fail. It’s fate, it’s destiny, it’s the sad, ugly truth. I’ve written on other blogs about having to put my horses up for sale but back then, I was different. I cared. I loved them and I still had hope. After over 16 years of fighting to be a part of the horse world the truth is that they never wanted me. I never fit in there and I will never fit in. I will never be the person I wanted to be because I just don’t have what it takes.

At one point, I did. Before the narcolepsy, before the concussions and before the car accident. I had what it takes but not any more. Life has shown me the truth, the sad, ugly truth. I am nothing and I will always be nothing. My horses deserve better, they deserve someone who wants them. Who loves them and who pays attention to them. That person isn’t me. My health is sliding downhill, and I have to cut back on the extras. I work too much to have pastimes, my energy is consumed by work. I work too much and I don’t get paid what I’m due because the filthy government takes my pay. So, I have to give up my horses so that I can pay my taxes.

I don’t believe in the American dream. I don’t believe in anything. Look around, there is death and destruction and sorrow at every turn. Joy is a myth and I don’t believe in it. I hate feeling like this and I hate fighting a losing battle. I used to believe in happily ever after. I used to believe that good things happen to good people but that just isn’t the case. The truth is, that fate is against all of us and those who are peons need to forget their dreams and just work because that is all they are little worker bees.

The dreams I had of being a writer and a competitive equestrian are as far away as pluto is from the sun. I don’t know what happened to me; I don’t know why I’m cursed. I wish someone would tell me why I’m being punished when all I ever did was I try to obey the rules. The only thing I did that I shouldn’t have done was dream. I dreamed that I could be more; that I could beat the odds and make it to the top. I was wrong though, I just don’t have the personality or the means to continue on. Farewell, my horses, farewell my dreams.

May you find a better dreamer.

The Demands of Daily Life

Hi there,

I’ve written a lot of posts over the past eight years. Some of them I’ve deleted. Others I let disappear. I’ve created multiple blogs and probably should have stuck to just one.

I’m young, at least that’s what people keep telling me. I’m 27. That seems old to me. Old enough that I should have a house and I should be able to pay my bills on time every time. Old enough that I shouldn’t be stuck in this rut that I’m in. Except, I am. This isn’t a post about that though. This is more of a reflection, a study of why I am where I am at. There are several factors that play into why my mind is not where it should be.

I’ve spent many years avoiding dissecting my life; looking at it from a third party perspective. It’s important to do that, to assess where you are and why you are there. It’s important to allow your emotions to flow out and to know why you have those emotions. One of my biggest hurdles is that I don’t really know how to let my emotions flow.

I learned how to stop feeling a long time ago. I don’t really remember making the conscious decision to stop feeling. It happened over time, like a faucet slowly getting gummed up with mineral deposits.

It’s gotten so bad that I can’t feel joy or hope or anything. So, I went to the casino to gamble because I need to pay board for my horses and my pay isn’t where it is supposed to be. I am stressing out about that; I’ve worked so hard and I don’t see the results. I’m told to work harder, to do more. All I want to do is write and play with my horses. I want to enjoy my life. To feel joy, and that is why I went to the casino. I was sure I had the luck I needed to make a little money. For a short while I did. I got drunk off the feeling of hope and excitement and winning. I’ve never really won anything before. The feeling was great and I sought to feel it again which led to me losing the money I’d won. Desperate for that feeling I went back another day. For a few seconds I felt that rush of excitement and hope.

When I realized why I’d gone to the casino and why I wanted to win; I was so lost because it took me so long to figure out why I was feeling (or not feeling) that way.  There are factors in my life that are outside of my control. Factors that are biological, cultural and social. All of these factors make it hard for me to see where I’m going.

At work we are supposed to be reading and learning from the 10X Rule by Grant Cardone. His book is like all those the other self-help, be the best you can be written by the “gurus”. Those people drive me insane, those gurus do, with their ‘you can do this if you try’ nonsense. What happens when you do try over and over again only to realize that you aren’t the best; that you are an ant waiting for the foot to step on you?

The truth is I should sell my horses and just slip into the netherworld. That is the only place for someone like me. It is because no matter how hard I try, I’ll never be good enough, I’m marked as cursed or something. Sitting here, writing this I’m looking at a pile of books I’ve been studying because I want to understand how the authors got noticed. I’ve got a story I want to sell but it’s not finished and why should I finish it when I know that I’ll just be passed by? For 27 years I’ve been passed by and when I am noticed it is for the wrong reasons. So I learned to hide and to not feel. The only weapons I had at the time. Weapons that hobble me now; I’ve hidden for so long that although I want people to notice me, I unconsciously sabotage my attempts to shine.

Image via Flickr Creative Commons, courtesy of Sally Jean

How do you win when your worst enemy is in your reflection? Self help gurus talk about being better, about optimizing each and every day. Tim Ferriss is an example of this type of ‘go get them’ and ‘here is how you do it’. I just finished listening to his podcast and he makes sense. He is a superhuman after all and for him it’s easy to optimize. He’s also a WM (white male) and that is the most privileged of all classes. It’s easy for him to say do this and be successful because for him it is easy. He has that unique factor that draws people to him.

How can I compare a 27 year old female to a 39 year old male? That is exactly the point. You can’t. What works for him is completely different than what works for me. I am so tired of feeling inadequate, of looking around and seeing where I should improve but not caring enough to do that. Where is my end? When can I stop feeling so utterly empty? The answer, most would say, is when you choose to stop to feeling that way. That’s easy for you to say, why don’t we swap shoes? Trade experiences and memories and life events? Once you’ve felt the pain I’ve felt, the fear, the sadness and the hopelessness; then we can talk.


Narcolepsy and Me

There is a part of me I ignore. I pretend it doesn’t exist and for the most part (as long as I take strong medication) I do OK. I get by. For the most part I am able to cast aside that part of me I don’t want to admit exists. I have a neurological disorder. My brain lacks a certain chemical that keeps me awake. My body actually attacks the hypocretin cells which means that my body cannot accurately regulate the sleep/wake cycles.

I have had to make allowances and I’ve had to accept that I won’t be able to do certain things but today, I was reminded that what I try to ignore is a serious and potentially dangerous condition.

“When I read your test back then I thought to myself ‘poor girl how does she function’?” My sleep doctor told me today when we were discussing my MSLT (Multiple Sleep Latency Test). She further explained by saying “Your test was impressive.” To which I responded “That’s not in a good way, is it?” She replied “You fell asleep within three minutes and went through several REM cycles [during your MSLT] anyone who falls asleep in less than 8 minutes has narcolepsy. You clearly have narcolepsy.”

She asked me about cataplexy and I told her that no, I don’t have it. As I write this I realize that I have experienced it- one time. I was about 12 years old and I was getting ice pops for my friends. One of our cats caught a rabbit and as I was carrying out the ice pops I saw the dead rabbit. I was shocked that it happened and I collapsed. I remember my whole body freezing up and I heard my friends say she fainted; she’s being dramatic. She fainted because of the rabbit. Once I came to I felt embarrassed. I brushed that incident off as fainting but now I realize that it was a cataplectic attack. SInce then I haven’t experienced one that bad (I’ve also learned how to play it safe). The way I’ve learned to control my symptoms has been through trial and error. Up until this point I told people I developed narcolepsy when I was in high school now I realize it began when I was in middle school. It just got worse in high school.

I remember falling asleep in almost all of my classes. When I was a junior one of my teachers asked me if anything was wrong. I told her that I had some family issues (I didn’t know I had narcolepsy). I remember struggling to make sense of why I couldn’t stay awake for more than a few minutes at a time. I always wrote it off as I was depressed and stressed and needed more sleep. I keep telling myself I’ll be ok if I get more sleep.

The thing with narcolepsy is that it makes your brain foggy. You fight the urge to sleep but during that fight you can’t retain memories or thoughts or ideas. Friends ask you “remember that time…” and you say no. People come up to you and you have no recollection of what you said or did. Good luck trying to remember conversations you’ve just had. Good luck trying to keep things straight.

The worst was when I was in high school and I was a youth leader for my church. I was helping during youth sunday by giving part of the message. I love talking in front of people; I love being the center of attention. The first service was great but I felt a sleep episode coming on. I remember telling my pastor that I wouldn’t do well the second time around. He assured me I did. I didn’t do well. I remember that I didn’t follow the script and that I felt like I was watching the whole catastrophe from a far away place. Since then I’ve avoided drawing attention to myself. Since then I’ve curled up in my shell because every time I try to expand; to become more, my mind freaks out and shuts down.

That is what is the most destructive part of narcolepsy. Instead of fight or flight my brain can’t handle the adrenaline and my body shuts down. My mind turns off and I am left dead in the water. I am left confused and uncertain as to what happened. People without narcolepsy have these moments. In the heat of battle or after a night of boozing yes, you can experience the same thing. My mind goes to that place without warning and without reason.

I am afraid to be myself because who I am is flawed. To keep the flaws at bay I have to control what I do. I have to be regimented. I have to have an iron clad schedule or else my mind shuts down. Life is about change but I fear it. I fear it because when faced with the unknown I don’t have the ability to decide what to do. The plus side is that if I have to face a similar situation I can “keep it together” I have honed certain skills out of the sheer need to be independent.

Most people with narcolepsy don’t drive because they get tired behind the wheel. My friends and family will tell you I go insane if I get myself from point A to point B. So I drive and I make sure I am safe. I down energy drinks and caffeine until I want to puke but I stay awake.

I have had to let go of my dreams of competing in eventing. I’ve had to give up jumping and I have also given up riding. At this point in my life riding isn’t something I am physically or mentally capable of. Which makes me so mad. I am furious that my body and mind are against my dreams and goals. I am furious that I have to deal with these insane symptoms. The thing I am most furious about is that I cannot explain to you how much it hurts when people brush this disease off or crack jokes about it. This disease is mysterious and therefore not serious.

Oh, how I wonder who I would be if I wasn’t constantly waging war against myself. I wonder who I would be if I was free of the desire to sleep. I sit here and write this because I’ve locked myself away. I’ve thrown out the key because letting go means I’d have to deal with emotions I cannot handle. Now, I have to decide if I should give up working full time and instead look for part time work; but how can I take care of myself if I’m unable to pay my bills. I just want answers and I just want peace. I just want to know that there is something stable in my life. I just want to be me but that isn’t an option.

Read more at: Narcolepsy Not Alone Julie Flygare has worked hard to bring awareness about Narcolepsy into popular media.