I consider myself somewhat of a health nut. I don’t mean the kind of crazy person that’s has calorie counter’s turrets, but rather, I tend to be constantly tapped into what the “best” choice in any given situation would be for myself and my body. Everything is a sliding scale. For many reasons, I have to constantly question what I can and cannot handle at any given time. Can I have a glass of champagne with my friends? Not today. Can I allow myself a little chocolate for a boost? Preferably. While I may find pleasure in a bit of instant gratification, there’s hardly ever a moment in which I make those choices without first analyzing how one tiny decision is going to impact the next 24-48 hours of my life.
I’m going to start this out by admitting quite freely, I am a hypocrite. I am absolutely a hypocrite. In every since of the word, I project judgement on the exact aspects of my life that I wildly defend when being judged. And one of the things I am most hypocritical about is complaints of ailments and jibber jabber about “chronic disease” and what you or your kids are going through this week.
Don’t get me wrong. I don’t not believe you. Thankfully my tendency to be hypocritical is backed by my absolute core belief that everyone has their truth and while their reality may differ from your own, it never makes it any less real. One of the most important things in life, to me, is recognizing and believing each others truth rather than wasting time on convincing others that we’re right and they’re wrong.
But, if you know me at all, you know that despite anything nagging, nawing, and repeating that I am going through, I will very rarely ever bring it up. The truth is, why should I? In my experience, no matter what it is you are going through or someone’s instance that they can relate, you will never, ever be met with a reaction that won’t completely shatter the vulnerability you feel in sharing what it is only you are experiencing.
Still, I think a lot of people out there feel overwhelmed by a variety of chronic feelings – whether that be the sickness of a chronic disease or a chronic depression over something he or she is experiencing. Only then do I think to come out of my shell and maybe share something, despite all the haters.
Today, I learned something very interesting after attending a neuropathic lunch and learn with a local health expert.
The one-hour course was about stress response and how to deal with stresses at work. To be honest, that has very little to do with why I attended. I don’t feel stressed about my work. In fact, on a day to day basis, I don’t recognize a great deal of stress at all. However, when a stressful moment of any kind crosses my path, I am the world’s fastest crazy person! I don’t deal well with surprises. My brain can’t even begin to process changes to my very set, very successful and proven habits that I get into in order to delicately manage my life. I think that anyone dealing with a chronic situation can relate to how delicate their schedules are, and the stress response of reacting when their ability to plan and predict is swept out from beneath them.
Long story short, for me: I have narcolepsy. I’ve been diagnosed several times, out of my own disbelief, and overall I have been aware of it for nine years and learning to accept it for only five of that.
A lot of people don’t know anything about narcolepsy other than the movies, if that. In summary, narcolepsy is a long-term neurological disorder that decreases the ability to regular sleep-wake cycles. For many, this inability to realize when you’re at rest and when you’re awake is the result of an autoimmune disorder where your body attacks the neuropeptide orexin. Orexin (or hypocretin) is a neuropeptide that tells your brain that you’re awake, full (after eating), or aroused.
In order to help loved ones relate, narcoleptics are often instructed to tell their friends and family that, “Having narcolepsy is like being awake for 3 days straight and trying to function normally.” And a lot of people kind of get it, but what they can’t really comprehend is the most important part about how a narcoleptic feels, and that is that you’re always awake for three days straight. It’s not like you’re awake for three days, try to have a normal day, and then you get to sleep in for 15 hours and everything is right as rain.
However, the awake-for-three-days analogy is the best way to have someone look at their own life and imagine knowing if you’re awake or asleep after so much time of being “on.” After three days, you probably wouldn’t remember if you ate at all. You’d hardly ever feel hungry, and you certainly wouldn’t know when to mindlessly stop eating. Or, imagine being awake for three days and then trying to spark yourself into a romantic evening.
The only real life saver to this constant depletion is the fact that narcoleptics, for the most part, don’t remember a time where life was any different. And, like all humans, we operate on our own level of norm. So, how can I feel three days exhausted when my version of three days of no sleep is, in and of itself, its own thing?
At the same time, that’s entirely why we get into trouble. We not only operate by our own sense of normalcy, but people with narcolepsy (and people with many other forms of auto immune disease) tend to attempt to operate at the level of everyone around them. The irony is that I get so depleted and so tired, that I get a sense of energy from the elation of being completely out of it. That’s when I tend to think I’m as capable as anyone around me and I make the mistake of eating just a little more sugar, staying up just one more hour, or running just one kilometer faster.
I literally have no sense of boundaries. I can’t develop boundaries. I can’t set boundaries. If I can’t even understand when I’m fully awake or fully asleep, how am I going to set boundaries on seemingly clearer aspects of life? I can’t. My brain is literally killing off that side of itself. The reason you can relate is because a very, very, very strong lack of sleep means that you haven’t refreshed those cells in your brain that refresh every time you get some shut eye. But imagine having all the shut eye in the world, yet your brain won’t hit the refresh button. Ever.
Psychologically and also scientifically, for me in particular, years of sleep studies show that I fall asleep every 9 minutes both when understimulated and when overstimulated. My only prayer of staying fully focused is to be somewhere directly in between and even then, my brain will fully shut down a couple times each hour while I stare at you, eyes wide open.
Yes, you read that right. I will be sleeping while I’m looking directly at you. In fact, my brain gets so good at shutting down that it will do a full reboot cycle while talking or even driving. Unless you know me very well and are well versed in narcolepsy, you will likely never notice when my eyes go dead for just a moment and there’s nothing but blankness back there.
Usually the one save grace of things like this, is the whole “ignorance is bliss” aspect, but that always fades with time.
Now that I’ve been aware of what’s happening for the better part of a decade, while my narcolepsy struggles started out with extreme drama and doctor’s telling me that I was going to die before understanding what it was that was ailing me, the exterior of this disease has significantly calmed itself, but the interior of the problem is a sad, overwhelming sense of awareness. What I mean is that I’m only 30-something, yet I already have the distinct sense of awareness of what it is like to grow so old and forgetful that the only lasting memory you have is the sharp sadness of knowing who you once were.
Already, I can recognize how dramatically my abilities have changed in a decade of time. It is more than the simple understanding that medicines no longer work and sleeping in once a week no longer allows you to maintain the insane schedule you were once capable of maintaining.
Like an 80-something year old, I look back and think, “I used to be…”
I used to be so bright, so beautiful. I used to be as smart as a whip. I used to be able to balance 18-21 credit hours, a full time career, and two extra part time jobs while never getting more than an A- in any class.
Like older people that sleep less and less, I become more forgetful. It is simple math, really. You replenish neurons by sleeping soundly, but if you never sleep soundly, you never replenish as much as you use. Now, add an auto immune disease on top of it, and you’re brain is aging at a significant rate.
When I was younger, my narcolepsy was constantly misdiagnosed as chronic depression. And doctor’s were none the wiser because they would hand out the standard medications for someone suffering from a mental illness and in all honesty, an anxiety medication, a sleeping pill, and an antidepressant are the exact same core starter meds of someone with narcolepsy. The difference is in the dosage and consistency of use. So, I always appeared to get better, when in truth, I was just sleeping well enough to be able to skim across the surface of life and go unnoticed as being any more abnormal than I already seemed.
As I got older, the round-about ways that I had taught myself to deal with narcolepsy would no longer work. People with narcolepsy often add extreme schedules and pressure to their lives in order to create a great deal of stress. It is similar to procrastinating in order to feel the pressure to get something done. By operating in a constant stress cycle, you’re secreting more adrenaline, and it is no secret that adrenaline keeps you awake!
When I was on my own, I had learned how to handle myself in order to survive. That meant, I had a general rule that no friend or relationship of any kind would be allowed to just hang out at my house. My house was my space. I almost always lived alone. Likewise, I didn’t eat meals during the day. Meals put me to sleep. I nursed sugar and caffeine all day long and it’s a miracle I have no cavities. I avoided drama and people that brought me down because I couldn’t handle any surprising swings, but I fed off of drama that involved me in a way that kept me constantly on my toes. I was a fiend of anything that kept me awake (mainly a very excessive sense of work ethic), and my ability to sleep was based entirely on a complete lack of nutrition so much so that I literally passed out at night.
As bad as that was for me, operating in that way allowed someone like me to pick myself u by the bootstraps of very unfortunate events in my life and rise far, far above it all to be a <1% statistic. I did it all. I did everything that was impossible. No one won any bets on me. And in the end, I had to act impossible in order to be impossible.
But things like that can’t last. It’s like running at the gym for five hours a day so you can live off of ice cream. How long is that going to last, really? No one loves ice cream that much. Especially me.
I grew up.
When I look back, I can’t even imagine where I would be if things in my life had gone any differently. The fact of it all is that I literally expected to be dead by the age of 27. On more than one occasion, I had family members tell me they expected the same. And with doctor’s telling me I was at the end of my rope, I lived my life knowing deep down that all I had to do was make it to my 28th birthday and I could finally give up!
As such, it makes a lot of sense as to how I lived my life. I did everything I ever thought possible or imagined wanting to do by the time I turned 28. I was spontaneous. I traveled, constantly! I loved fast. I played hard. And just the same, I fell hard and I was all too willing to end my life so soon on more than one occasion. I had been conditioned to live in such a manic, ultra-decisive manner. Everything was here and now!
I remember my 27th year. I was done. I had made it. As the year wore off and life slowed down, all my plans were coming to an end. I had literally never imagined a moment beyond that point of my life. I was well past imagining falling in love or getting married. I had never imagined children of my own. And beyond the usual scope of a post-graduate depression, I literally had no idea what I was going to do for the rest of my life. As far as I was concerned, my life was over.
That just so happened to be the most pivotal year of my life and without any further details, the only detail that really matters is that I met Stark that year and my future suddenly become history. We lived life fast and yet everything in our lives slowed way, way down.
Since I met Stark, we’ve struggled together with an unforeseen digression in my mood and behavior. When I first met him, I had a full time career as a counselor. I was writing my final dissertation of my Masters Degree. And I was moonlighting as a marketing representative for Sony Music Entertainment and running my own event marketing and promotions business on top of that where I wrote for and worked with a variety of local venues and businesses to promote events happening throughout the Salt Lake City area.
Little did I know that two very detrimental things would happen to me in the first few months we knew each other. For starters, I would get in a motorcycle accident and practically scramble my head inside an oversized helmet, resulting in a brain trauma that left me instantaneously unable to properly retain new memories or information and at a complete loss for entire parts of my life that I thought I would never forget. Then, as I let my life go and let my staunch sense of control subside into a lose schedule that took into account the choices of two very, very different human beings, an overwhelming post-traumatic stress response would take over my ability to deal with… anything.
What the two of us have had to suffer together is far greater than the deepest of hells I experienced when first diagnosed. This time, in the shadow of brain trauma and PTSD, I would be misdiagnosed for the longest single moment of my life as schitzophrenic. I would lose all hope as one of my most trusted friends suddenly had voiced doubt in me. I would lose all perspective on what was real, and what was ever real. And even to this day, I will live with extreme paranoia as to why, at any given time in my life, I made the decisions I did. Was I ever really myself? Or was everything just living out a script – taken on unknowingly by another character, a television show, a movie, a persona I had developed and taken on as my own?
While the misdiagnosis was as short lived as only a couple weeks, it left a gaping hole in my life that I never quite recovered from. I can’t even begin to describe the instant break between two people when they suddenly believe that you are completely incapable of comprehending reality.
Even with that detriment behind me, as we were relayed the same information I had already been told in a previous life, and this time around everything made exact sense. Test were proving it. Life was proving it. I had narcolepsy and there was absolutely no denying it. The problem with this time around is that compared to my previous years, I had nothing but time and time had gotten away from me.
Having nothing but time left essentially left my brain open to the elements of life. Without a very set, overwhelming schedule, my ability to comprehend being awake or asleep was a complete fog. As such, any disruption to my looming sleep cycle would come across in extreme overreactions, where (and this is where the schizophrenia misdiagnosis came from) like the flip of a switch I would go from completely brain dead and quiet to hand flailing, screaming, fire in my eyes reactive. Imagine being at the verge of sleep when sleep is the one thing you need so desperately, and something shocks you awake. My life felt like I was constantly being woken up right before the sweet release of sleep, and I felt like I hadn’t slept in months! My usual over-stressed behavior that forced me to pass out night after night, was no longer a part of my life. I didn’t have a schedule that was quite literally killing me. I didn’t have a lack of nutrition so depleted of energy that I couldn’t even muster the energy to cook myself dinner on most nights because I was that tired. The problem was I was always tired and never, ever asleep.
So naturally, we started down the path of medications, but having lived an entire lifetime in only 27 years makes for a lot of good, bad, and the ugly. Not enough stimulation would cause me to be mindless all day long. Too much stimulation would cause me to spike with so much energy that my heart would temporarily crap out and then, for the rest of the day, I would be completely worthless. And on the tail end, the strongest sleep medications meant that I spent the entire night in REM (like a normal person!) and unable to escape the nightmares of an unlocked subconscious. So, despite the world’s strongest sleep medication (and yes, I was on it), my body would spend the entire night fighting to be awake and get away from the internal life that was haunting me. As a result, after months of fending off the medication, I was left wide awake with hallucinations. My life became a waking nightmare and I was completely unaware of my reality so much so that I tried desperately to get out of a 26th floor window without ever realizing that this reality was not another nightmare.
Likewise, sleeping medication that wasn’t strong enough meant that I never went to sleep and I would suffer a mild case of the very same problem – where my body was fighting to stay awake while something chemical was shutting everything down inside of me.
Today, in this brief health class, the specialist brought up a few herbal answers to a constant fight of flight response, and it suddenly dawned on me how narcolepsy causes the dominoes to fall, one by one, until your life is completely toppled over and out of place.
Most things she brought up, I couldn’t even pretend to apply to my life. I don’t need anything keeping me more stimulated than my long-practiced stress response. Until I can relax well enough to actually let a simulator be the only thing that keeps me awake, most of what I need is to be able to deal with the chemical stress response caused by the simulators I can no longer live without in order to be a contributing member to society. So, according to this specialist, I need magnesium.
Everything I crave and tend to overeat just so happens to be a natural magnesium supplement: dark chocolate, almonds, eggs, avocados, oats. In conjunction, magnesium is flushed from your system with calcium, and I have almost no natural calcium intake whatsoever because I don’t eat or drink much dairy of any kind. As such, I’m deficient on both levels.
Magnesium helps us properly transfer adrenaline through our bodies when overstimulated. It allows us to not store all that energy into tension. Without properly dealing with the stress-response, muscles will over tighten, and for me (someone that over produced adrenaline at the most inopportune times) lower back pain becomes excruciating at times because the adrenal glands are basically poisoning your kidneys (which, by the way, I know from past kidney problems is an indicator of plummeting potassium levels). And since my body is sloughing off any magnesium it does have, I am losing calcium faster than I am getting it which is why these extreme workout schedules that I’ve added to my life in order to give myself the illusion of a new, ultra crazy do-all-the-things schedule end up manifesting in extreme joint pain and stress fractures.
Suddenly, the complete circle of my life is seen. While, for the most part, I can’t really do anything more about it than I’m already doing, adding another piece to the puzzle allows me to see the big picture of knowing what I am capable of and when I am on the right path.
I have friends with similar struggles through very different problems and they often come to me amazed by what it is I can do “despite it all.” But, I am no machine. I am no miracle worker. I assure you that behind the scenes, I have battled daemons most days of my life in order to appear even partially composed in the daylight of life’s public eye.
I do run my own business. I do work very hard and often crazy hours. I do run a fairly traditional household where I cook and clean on top of it all. I do a lot of things, many of which I can attribute to having the world’s greatest partner. But, what I can do is always the directly result of what I am not doing. That’s the major difference in our lives. You, I bet, are not the type of person where if you binge watching on Netflix means you’re automatically choosing to show up late to work at least one day of the week, and if you binge watch just one more episode behind the cusp of sleepiness, you’re going to be entirely incapable of both showing up to work AND attending even five minutes of a social event on Friday.
For me, I can do it all if “it all” is something I can plan on doing. Unfortunately, that means I’m always going to have heart attack levels of stress response to unforeseen tasks, projects, accusations, dramas. For the most part, I’ve learned very well how to plan with contingencies in mind. So I’m always prepared, even for those last minute projects (mostly because I anticipate all of them and have already started working on them). But what I can never seem to deal with is the response to perceived accusations and drama. These are post traumatic emotional responses. These are the times where just one sentence of a work email can set my entire day reeling because, deep down, I feel like someone is trying to claim that I didn’t do something right or on time. More than any other aspect of my life, these two are my absolute biggest triggers. I’ve learned quite well how to roll with any other punches in life. But, when you spend all of your life’s energy choosing to anticipate the contingencies of your career life – planning for, working ahead, and constantly doing – at the loss of the simple, human right to binge watch with your significant other, than it is hard to not react personally when someone slights you in saying, “I’m still waiting for Caz on…”
No. No you’re not. When have you ever? In almost every case that I get blamed for being waited on, the task was done 2+ months prior and all those involved have completely forgotten about it or disregarded it’s original due date. I am always on; always on-task. I wish I could anticipate and deal with the stress-trigger of having to spend so much time and energy constantly proving myself. In fact, I believe at the core of all my ill-fated reactions I can say that they all come as an instantly tired result of having to prove myself over something. In the end, I feel like a rabid animal and I feel alienated. While I bounce back faster and faster as I become more aware, I can’t seem to perfect never reacting in the first place. Maybe someday. But in the end, for all the capability others see in me, I honestly wonder if I will ever be capable of the world’s most simplistic efforts – like, knowing how to relax, being able to take a nap, or having coffee with a friend any time after 11am. I wonder if I’ll ever be able to let go of anticipating my surroundings because I can trust myself to roll with the punches. Because if I could do that, if I could do just this one thing, then I would be capable of applying a level of attention to myself and my own life that would allow me to feel as though, for once, I spent my time on something truly worthwhile.