THE POWER OF THE MIND
When most people think of strength and power they tend to focus on muscles, size, etc. If you were to ask the average person who they thought the strongest person was you will probably get the person that is the biggest person they know or the person they think can lift the most weight. Unfortunately they are over looking something that can not lift anything physically, yet it has more power and control than every muscle in anyone's body combined. Are you curious yet?
The mind is the most powerful thing that any of us have. With out it we would not be able to use any of those muscles that most people see as strong! With out it we would not be able to overcome adversity! With out it we would not be ourselves, we would be mindless zombies! Our minds help shape and define who we are and helps us be strong.
Why do I focus on the mind so much? Well, my mind is trying to take control of me! Most people would read that statement and simply think that I am weak minded. Others would read that statement and say that I obviously need some mental help because I have a screw loose. While others would simply stare blankly at the page because they can not fathom the statement. Unfortunately just a few would relate and probably nod their head in agreement.
Ultimately, I am speaking to the majority that do not understand or agree with my statement. I want to help provide them with a glimpse into a world that they simply do not understand. I want them to truly understand that what they see, is not the entire story.
To start, let us look at a cliche that everyone has heard at one point in their life. "Mind OVER matter!". I think of this phrase two different ways, either you are stubborn enough to push through something physical, (pain, an actual physical task, etc) or you are mind is strong enough to allow you to overcome those obstacles. One powerful example of the phrase is child birth and women. Many times I have heard and read that child birth is the most painful thing that ANYONE can go through, yet there are many women in the world that pass on any pain relieving drugs and push through. Now that is an AMAZING example mental strength! Another example is someone running their first marathon. It is hard to run a marathon, you body screams at you to stop, you lungs beg you to slow down, your bodies natural response is to make you stop because you have reached exhaustion. These people are able to use their mind and push away those thoughts, to tell their body to go more, essentially they use their mind to shut everything out and focus on one thing; finishing the race. I doubt anyone would argue and say that the people in either example have a weak mind. In my humble opinion these people have an extremely powerful mind. BUT, these people are USING their minds to overcome some sort of obstacle. They are making a conscience choice to use ,"Their mind OVER matter".
There many other times when your mind makes choices for you. Think about that for a minute, you are NOT given a choice because your mind simply does not allow it. One simple example would be your minds over arching task of keeping you alive. This can be a simple as you not being able to jump out of a plane and sky diving. No matter how much you want to do it, no matter how much your friends egg you on or try to support you, your mind simply will not allow you to do it! That is crazy if you think about it, as humans we like to think that if nothing else we control our own actions. BUT in reality there are some things we simply do not have control of. Another more common item that everyone can relate to is our "flight or fight" response. Essentially when faced with certain obstacles our mind decides if we are going to stay and face the obstacle or run away from it. My final example is sleep apnea, a condition that many people face daily. The simple explanation of the condition is that, (for varied reasons) you stop breathing while you are sleeping. As stated earlier your mind is always trying to keep you alive. In this case it wakes you up so that you start breathing. Essentially your mind saves your life every time this happens. Again another powerful thought, if you mind did not wake you, you could die.
So now that we have seen how powerful our minds are, either from us making a conscience choice to use it or our minds taking over I want to show you how that affects me. To begin with you need to have a little history on me. I am STUBBORN, I learned at a young age that I could use my mind to overcome many things through life. I doubt you could really find anyone that would argue with me be stubborn. Second, I feel that I am reasonably intelligent. I was able to overcome Dyslexia and graduate, sumo cum laude, from college with a Bachelor's Degree in Business, and finally (probably the most important thing) I have Narcolepsy. Narcolepsy is a strange and relatively rare disease that mess with you sleep awake cycles. While there is much more to Narcolepsy than that, I am not focusing on the definition or deep explanation of the disease.
Knowing the following things; the mind is powerful,I am stubborn, I feel that I am relatively intelligent, and I have Narcolepsy; I am sure you are thinking, "How does this all relate". Well Narcolepsy affects me in more ways than I ever could have imagined anything could affect any one person. First and probably the most obvious concern that I specifically have is the sheer exhaustion I feel everyday day, hour, minute, and second that I am "awake". While I understand that seems like a very exaggerated statement and probably sounds a bit over dramatic, but it simply is NOT. I have read many time that the "experts" say for the "average" person to understand what it feels like to have Narcolepsy they would have to stay up 72 hours straight and then preform their normal daily tasks. To me, a person with Narcolepsy, I struggle with that example. So let me try to explain it a different way, using my actual experience.
Every morning I wake up and like many people feel like a truck has run me over. I know I am not alone or special to this feeling, it is simply how I feel. I use the bathroom and immediately take my medication to stay awake. Think about that for a minute, I have not been out of bed long enough to even get fully awake and I am taking medication to STAY awake. I get myself a bowl of cereal, sit down to eat it, and commence the day long task of staying awake and alert. As I am eating my cereal normally my head will be constantly moving, (think of someone with Parkinson's disease and body movements but my head) and/or I will be swaying back and forth, (think about someone rocking a baby to sleep). Now I am not consciencely making myself do these movements, I am already falling asleep. Once I am done eating I have to very carefully walk to the sink because my knees might start to buckle and possibly have extreme leg weakness, again I am starting to fall asleep. So now that I have eaten I have three options; sleep (the option my mind and body are telling me to take), work out, or use my cell phone while reclining in my chair. Now I can imagine what most of you are thinking, "Yeah right, this guy just isn't trying hard enough". I wish that was the case, but is not. I must fight my mind and body or I will simply go to sleep.
Once everyone else, (my wife and three boys) are up, it is time to shower. Now remember the three options I started with, (sleep, work out, and phone), standing in a shower is not on that list. That means that I have to try twice as hard to stay awake. Now let's add one additional difficulty to the equation, you have to close your eyes to wash your hair in the shower. Yep, my mind and body are already telling me to sleep, and now I am closing my eyes. This fun dance I play every morning. Trying to stay clean, but he awake, and up right. No matter how hard I fight my eyes will close themselves multiple times, my head will bob, my knees will buckle, but I will NOT give in.
Fast forward a little and it is time to go to work. Problem, I can't drive, unless everyone would like to see how well I can sleep drive. So, I have to pay my brother in law, $20 a week to drive me to work. As usually during the drive I haven't limited options, sleep or play on my phone and pretty much be oblivious to the outside world.
Now, I have reached my place of employment, unfortunately this is the most alert and awake I will be all day, (this hurts me to the core because I want to be awake and alert for my family and I can not, but for some stupid reason I am a little awake and alert at work). So, I know the next thing everyone would like to know; what do I do for work? Well, I am a Quality Manager in a small machine shop. Yep a factory! The company I work for is very small, less than 25 employees, so I wear lots of hats. I am responsible for all the high level ISO Quality systems, checking all the product that is being made in the plant, working with customers, working with suppliers, programming our CMM, I am the Safety representative for the company, etc... Now in my company we specialize in mid to large sized parts. So we have parts that weigh anywhere from a couple pounds to over 2000 pounds. So, me being a Narcoleptic, I still have to run a $300,000+ machine, while using a crane to lift these parts, and I have to be very detail oriented. I have to be on high alert at all times to make sure I don't slip out of consciousness, I don't want to think what could happen if I lost the fight with my mind and fall asleep while moving a 2000 pound part or crashed my machine. That does not include the concern of me falling asleep while being around forklifts. Or finally what about the risk of me consciously going to sleep and talking to a customer while I am effectively sleeping. Every moment at work there is an increased risk that something could happen with pretty nasty consequences. So, I put every ounce of my being into staying awake and alert. Even with all that effort I still have had two instances, at least that I am aware of, were I lost the battle. The first instance I started to tilt backwards and I could not stop myself from moving. I actually had to reach out and grab a coworker's shirt or I was going to hit the floor. The second instance, I actually fell asleep standing up in my office while going through an ISO audit. No one noticed, but I still fell asleep.
Now all of this effort has some pretty significant consequences on me and my family. The minute I step foot out of the plant I start to crash. One or a combination of the following hit me; it feels like my stomach is in my mouth and I am going to throw up, I get a migraine that makes me light, sound, and movement sensitive, no matter what I can not stay awake, I get shooting pains through out my body, or my entire body/mind shuts down. To make matters worse my wife, oldest son, or another family member has to drive me home, (I work 30 minutes from home).
Most days all I want to do is come home and go to sleep. My stomach is upset, (gas pains, feeling like I need to vomit, etc), my head hurts, (either a migraine or a nasty headache), and I have no energy, (I simply don't have the drive to keep fighting). So the time I WANT to be most awake, it is everything I can muster to simply kind of stay awake.
It is now time to have supper with the family. Like most families we strive to eat as a family at the dining room table. Well that once again is a problem, (remember my three options). I can not sit and eat, so I have to stand and eat. Most days not only do I have to stand but I have pace in between bites. If I don't do that I start to wobble around and risk falling.
Now that we are done eating I still can not stop moving or sit down. Most days my boys and/or wife will go outside of with me. We play volleyball, Frisbee, football, something that keeps me moving. Most days we do this until it is dark because we can no longer see what we are doing, (recently we purchased a LED volleyball so we can play later into the night). Obviously this can not be done all day or everyday, the kids have homework, the weather gets in the way, my wife and boys wear out, there might be some thing good to watch on TV. In those cases I have limited options. If I want to be able to actually be involved with what is going on or really follow the TV show I have to work out. This can happen jogging in place, running on the treadmill, or riding our stationary bike. Once I stop I have about 30 seconds and I will start falling asleep. My other option is to sit in my recliner, recliner and play on my phone. While this will keep me "awake" I can only sort of pay attention to my family or what ever is on the television.
As the day is winding down I have to prepare for bed. Keep in mind I have to be in bed by 9:30 and I can not eat after 7:30 because my medication. I need to get my lunch together, get clothes out for the next day, prepare my sleeping medication, and use the bathroom. Many days I am only able to accomplish using the bathroom because I am so wobbly and unstable because I am simply falling asleep.
Most are thinking, "well at least he is in bed, his day is done". Unfortunately that is not always the case. Many times when I get in bed I start to crash just like I left work. So no matter how tired I might be I don't go to sleep because I am worried I am going to throw up or I am in to much pain. Countless times I have went to sleep with tears in my eyes.
As you can see no matter how stubborn I am and how strong I might feel that I am, I am not always capable to over rule my brains desire to sleep. My brain is more powerful than many of my conscience decisions. While I have found some ways to fool my brain into thinking I don't need sleep, in the end I always end up with the short sale and of the stick.
That is how I would explain how tired a Narcoleptic person is, or at least me.
So far I have given you the "10,000 foot" view of my day. Now I am going to give you an insight into some of the smaller but just as life altering symptoms that I have from Narcolepsy. I briefly touched on my wobbles but now we are going to dig a little deeper into it. The best way that I can explain it is that I can feel myself tipping. I can feel my body rocking forward and/or backward. I am consciencely trying to stop myself from moving. Sometimes I try to bring my toes up but they don't seem to listen. Sometimes I try to tighten my abs but they don't listen. Other times I simply try to lean the other way but my body won't listen. Countless times I have had to grab a wall to stop my momentum. The other times I have had to ask my wife and or boys to give me a shove to get me going the correct way. As I already noted above I have had to use a coworker to keep my from falling. Now when ever I am walking or especially trying to stand in one place I do everything in my power to make sure that there is something within arms reach just in case I tip. Once again my mind is winning the battle. No matter how hard I try I can not keep myself from wobbling.
On top of my wobbles I also get leg weakness. Keep in mind I am able to run on my treadmill for 70 minutes at a time. I can run around outside longer than all three of my boys. At one point in my life I rode my bicycle 5 to 10 miles a day. Short story I have pretty fit legs. With that in mind it is pretty alarming when I can barely walk because my legs are shaking they are so weak or when I completely change my gate. Countless times I have had to stop walking and collect myself because I simply could not walk any further. Again my mind is over riding my want to be awake. It is trying to force me to sleep by making it nearly impossible to move!
So if my body wobbling and leg weakness is not bad enough, Narcolepsy still affects my balance and lower body a little more. The more tired I am and the more I have done the more my knees buckle. Simple put I can be walking along just fine with no issues and one of my knees will simply give out. Put the body wobbles together, add some leg weakness, then put in an added side of knee buckles and walking can become quite the calamity. My bedroom is approximately between 20 and 30 feet from my chair and I have instances where it has taken me close to 5 minutes to cover that distance. The similar theme is repeating itself, I am not able to over come my mind.
Narcolepsy can also affect my head and neck. There are many times you will see me and it appears that I am jamming to some music that only I can hear. Other times it looks like my head has gotten stuck to the back and left or right. Well things are not always as they appear. When I am "jamming" I am not moving my head. Apparently my mind has decided that my head needs to move. I have to tell everyone that they can not watch my head for a yes or no answer because I don't always have control of it, (can you imagine the faces I get when I tell people that). When my head appears to be stuck, almost like it is stuck in a corner, it IS. There are times when I am not able to unstick it. On top of that it hurts because my muscles are spasming which is why it is stuck. Once again my mind has taken away my ability to control my body.
So far I have talked about things that everyone can see but there are still many things that other people can not see. I have already mentioned migraines, but I did not go into much detail. Before being diagnosed with Narcolepsy I use to get migraines. These would plant themselves behind my eyes and hurt BUT I could work through them, (I am pretty sure they were cause by my astigmatism and my computer use at work). Unfortunately the migraines that I get from Narcolepsy, I am not capable to push through them. These migraines are simply debilitating, I need to block out all light and sound; additionally I have to make sure not to move. If I do not the pain is simply unbearable, I can not function. Some times I am able to nap to get rid of the migraine, but not always. Multiple times I have napped or slept through the night to wake up with the migraine still being present and with the same intensity. Sometimes I am able to move enough, basically pulling myself out of a crash, to get rid of it, but not always and many times the act of trying this is more pain than it is worth.
I also have nasty stomach issues. I have already mentioned the urge to throw up but my stomach issues don't stop there. It is not uncommon for me to be in the bathroom 5 - 6 time a day and unfortunately it is not to just pee. Additionally when I am in the bathroom there is no sort of solid consistancy to what I have going on. Think about doing that 5 - 6 times a day, everyday, your backside is not your friend. I have done just about test there is to figure out my stomach issues and nobody knows why I have them.
So far I have touched on physical symptoms, things that you can see one way or another. There are still other ways that Narcolepsy affects me on a daily basis. One of the most troubling things is my memory. I have been able to overcome the difficulties that Dsylexia have posed to my memory, but I have not figured out how to overcome the difficulties that Narcolepsy has presented. As I stated earlier I graduated sum cum laude from college. I was the guy you wanted on your debate team or presentation team. I was quick on my feet, I could speak confidently about a subject even if I did not know much about it. I could use random big words sometimes just for affect. I was able to pull from my base of random knowledge with ease. Today, many times in simple conversations I can not find the simplest words. Other times I simply lose my train of thought, I completely blank and have no clue what I was talking about or why. Worst of all, I struggle to recall just about anything. You don't have to worry about me using random facts because many times I can't remember important family events. Imagine how you would feel if you could not remember the births of your children. There are many days that I can not! Many days I feel like Narcolepsy has taken me from a relatively intelligent person and turned me into a person that never attended a day of school in my life. Yes, logically I know this is not the case, but when I have episodes all logic goes out the window. Again my mind has taken control and does not allow me to access the things I want, when I want it.
So far I have discussed things that everyone has potentially dealt with at one point in there life. There are still yet a couple things that are not commonly seen in the average person. The first thing is automatic behaviors. What are they you ask? Well they are things that you do subconsciously while having no knowledge of it consciously. The worst thing is that I never know if or when they happen because I am effectively sleeping consciously. Essentially to me, I have lost that section of time, what ever I did during that time does not exist to me. One example of this was when I was out taking a walk by myself. I was in a city an hour away from home attending training. Because I was unfamiliar with the area I had a very defined walking path. I could see an intersection not far from me, (I would guess less than 1 minute away) and I knew I had to turn at it. Well I walked and walked, but I never got to the intersection. I stopped, I looked around, but I could not find the intersection. Knowing standing in one place would not get me anywhere I kept walking. Eventually I figured out, I did turn at the intersection as I had planned but I did it subconsciously because consciously I was sleeping. Can you imagine the feeling of being lost, in a city your unfamiliar with, and having no other option but to keep walking and hope you figure it out. I have other examples but they are all similar, while I thought I was awake the entire time I was not. Because of these behaviors I no longer do anything alone. Because of these behaviors my wife no longer feels comfortable leaving me home alone and I can not argue with her. Talk about humbling, talk about losing control, talk about the power of your mind!
Last but not least I have hallucinations, some auditory, some visual, and some tactile. Probably my worst hallucination was an auditory hallucination. While I do not have the scary vivid nightmares that other Narcoleptics have, in this case I wish I did. My family and I were eating diner at the table. My middle son was singing a song that was driving me up a wall so I told him to stop, so he did. When everyone was done I went into the living room. I heard my son singing the same song, so I yelled at him to stop and he did. Within seconds he started to sing the song again. Now I was MAD, he just ignored me for a third time. I really yelled for him to stop. Within seconds my wife and son walk around the corner with a puzzled look on their faces. They were talking and he was not singing. Talk about a blow being a parent. I just yelled at my son, really yelled, and I was imagining what happened. I now question everything I know and think because I am no longer sure what is real or not.
Having Narcolepsy has taught me many things. One of most powerful is to cherish every moment like it is your last. In my case I am no longer sure what is real verse imagination. Other times I don't know if I am going to lose time or not. With so much uncertainty, those moments that are real, they must cherished and cherished in the moment. Why in the moment, who knows if I will be able to recall them later. Another thing I have learned is that you can not BEAT your mind. In the long run you will always have end up in second place. Case in point, no matter how many coping mechanism I come up with to stave off a crash, sooner or later my mind WILL force me to sleep. One last thing that everyone can learn, is to not judge a book by its cover. Just looking at me you would never know I have a strange debilitating disease, but I do and it affects EVERY aspect of my life.
Not all is bad. Yes, I have lots of negative things going on, yes my life has gotten exponentially harder, BUT my close family has been there with me the entire time. They have stuck with me. Yes, I am in a constant state of motion, yes it sucks, BUT I have more stamina than pretty much everyone in my family. I can jog and jog and jog. Recently while playing tag with my children I was able to catch a kid in his late teens. He confidently pronounced, "I GOT this!" when he found out I was it. Within 30 seconds not only did I catch him, but I was able to jog back to the rest of the group who were playing tag and the confident teen was not able to play for a while.
There are other things that pop up here and there like random shooting pains in my joints, random shooting pains in my muscles, shooting pains in my feet, etc... I have heard many people say, "I could not do what you do!". I have heard other people say, "I don't know how you do it!". I simply look at them and give them a simple answer, " I will NOT quit!, That is how I do it.". While yes my mind has won many battles, most days most of the battles, it has not broken my will. It has not broken my drive to continue to push on, to continue to help my boys grow into well respected men. Narcolepsy may eventually take away my ability to work, but it will not destroy my self worth. While Narcolepsy dictates many things in my life, it might make me question reality, it will never break me. I WILL have BAD days, but I will ALWAYS bounce back! Narcolepsy will not take me away from my family because my will to keep going is stronger than the control that my mind has taken from me! Narcolepsy, will only make me a better me and help me raise my boys into the best MEN that they can be!
When I first heard my diagnosis of Narcolepsy, I was up beat and positive. My doctor told me you might have to take some meds during the day and at night, but don't worry it is controllable. For many with Narcolepsy he was correct, unfortunately for me he was not. I have sense seen some where around 4 other specialist with the most common theme being they have no idea. I have heard countless times that I have "non-standard" symptoms. I have had to many bad days to count. I have had to many instances where my mind won the battle. BUT the war is not over! I still get up everyday and do the best I can. The war will NOT be over until I no longer have the WILL to fight. Well, I will NOT quit fighting and as long as I have my wife and three boys my WILL will NOT falter. I was not wrong when I said the mind is strong, but it will never be strong enough to break your will. My will is STRONGER than my mind, I might never win the war, but it will never end because I will never stop fighting!
James M. Funk III
The mind is the most powerful thing that any of us have. With out it we would not be able to use any of those muscles that most people see as strong! With out it we would not be able to overcome adversity! With out it we would not be ourselves, we would be mindless zombies! Our minds help shape and define who we are and helps us be strong.
Why do I focus on the mind so much? Well, my mind is trying to take control of me! Most people would read that statement and simply think that I am weak minded. Others would read that statement and say that I obviously need some mental help because I have a screw loose. While others would simply stare blankly at the page because they can not fathom the statement. Unfortunately just a few would relate and probably nod their head in agreement.
Ultimately, I am speaking to the majority that do not understand or agree with my statement. I want to help provide them with a glimpse into a world that they simply do not understand. I want them to truly understand that what they see, is not the entire story.
To start, let us look at a cliche that everyone has heard at one point in their life. "Mind OVER matter!". I think of this phrase two different ways, either you are stubborn enough to push through something physical, (pain, an actual physical task, etc) or you are mind is strong enough to allow you to overcome those obstacles. One powerful example of the phrase is child birth and women. Many times I have heard and read that child birth is the most painful thing that ANYONE can go through, yet there are many women in the world that pass on any pain relieving drugs and push through. Now that is an AMAZING example mental strength! Another example is someone running their first marathon. It is hard to run a marathon, you body screams at you to stop, you lungs beg you to slow down, your bodies natural response is to make you stop because you have reached exhaustion. These people are able to use their mind and push away those thoughts, to tell their body to go more, essentially they use their mind to shut everything out and focus on one thing; finishing the race. I doubt anyone would argue and say that the people in either example have a weak mind. In my humble opinion these people have an extremely powerful mind. BUT, these people are USING their minds to overcome some sort of obstacle. They are making a conscience choice to use ,"Their mind OVER matter".
There many other times when your mind makes choices for you. Think about that for a minute, you are NOT given a choice because your mind simply does not allow it. One simple example would be your minds over arching task of keeping you alive. This can be a simple as you not being able to jump out of a plane and sky diving. No matter how much you want to do it, no matter how much your friends egg you on or try to support you, your mind simply will not allow you to do it! That is crazy if you think about it, as humans we like to think that if nothing else we control our own actions. BUT in reality there are some things we simply do not have control of. Another more common item that everyone can relate to is our "flight or fight" response. Essentially when faced with certain obstacles our mind decides if we are going to stay and face the obstacle or run away from it. My final example is sleep apnea, a condition that many people face daily. The simple explanation of the condition is that, (for varied reasons) you stop breathing while you are sleeping. As stated earlier your mind is always trying to keep you alive. In this case it wakes you up so that you start breathing. Essentially your mind saves your life every time this happens. Again another powerful thought, if you mind did not wake you, you could die.
So now that we have seen how powerful our minds are, either from us making a conscience choice to use it or our minds taking over I want to show you how that affects me. To begin with you need to have a little history on me. I am STUBBORN, I learned at a young age that I could use my mind to overcome many things through life. I doubt you could really find anyone that would argue with me be stubborn. Second, I feel that I am reasonably intelligent. I was able to overcome Dyslexia and graduate, sumo cum laude, from college with a Bachelor's Degree in Business, and finally (probably the most important thing) I have Narcolepsy. Narcolepsy is a strange and relatively rare disease that mess with you sleep awake cycles. While there is much more to Narcolepsy than that, I am not focusing on the definition or deep explanation of the disease.
Knowing the following things; the mind is powerful,I am stubborn, I feel that I am relatively intelligent, and I have Narcolepsy; I am sure you are thinking, "How does this all relate". Well Narcolepsy affects me in more ways than I ever could have imagined anything could affect any one person. First and probably the most obvious concern that I specifically have is the sheer exhaustion I feel everyday day, hour, minute, and second that I am "awake". While I understand that seems like a very exaggerated statement and probably sounds a bit over dramatic, but it simply is NOT. I have read many time that the "experts" say for the "average" person to understand what it feels like to have Narcolepsy they would have to stay up 72 hours straight and then preform their normal daily tasks. To me, a person with Narcolepsy, I struggle with that example. So let me try to explain it a different way, using my actual experience.
Every morning I wake up and like many people feel like a truck has run me over. I know I am not alone or special to this feeling, it is simply how I feel. I use the bathroom and immediately take my medication to stay awake. Think about that for a minute, I have not been out of bed long enough to even get fully awake and I am taking medication to STAY awake. I get myself a bowl of cereal, sit down to eat it, and commence the day long task of staying awake and alert. As I am eating my cereal normally my head will be constantly moving, (think of someone with Parkinson's disease and body movements but my head) and/or I will be swaying back and forth, (think about someone rocking a baby to sleep). Now I am not consciencely making myself do these movements, I am already falling asleep. Once I am done eating I have to very carefully walk to the sink because my knees might start to buckle and possibly have extreme leg weakness, again I am starting to fall asleep. So now that I have eaten I have three options; sleep (the option my mind and body are telling me to take), work out, or use my cell phone while reclining in my chair. Now I can imagine what most of you are thinking, "Yeah right, this guy just isn't trying hard enough". I wish that was the case, but is not. I must fight my mind and body or I will simply go to sleep.
Once everyone else, (my wife and three boys) are up, it is time to shower. Now remember the three options I started with, (sleep, work out, and phone), standing in a shower is not on that list. That means that I have to try twice as hard to stay awake. Now let's add one additional difficulty to the equation, you have to close your eyes to wash your hair in the shower. Yep, my mind and body are already telling me to sleep, and now I am closing my eyes. This fun dance I play every morning. Trying to stay clean, but he awake, and up right. No matter how hard I fight my eyes will close themselves multiple times, my head will bob, my knees will buckle, but I will NOT give in.
Fast forward a little and it is time to go to work. Problem, I can't drive, unless everyone would like to see how well I can sleep drive. So, I have to pay my brother in law, $20 a week to drive me to work. As usually during the drive I haven't limited options, sleep or play on my phone and pretty much be oblivious to the outside world.
Now, I have reached my place of employment, unfortunately this is the most alert and awake I will be all day, (this hurts me to the core because I want to be awake and alert for my family and I can not, but for some stupid reason I am a little awake and alert at work). So, I know the next thing everyone would like to know; what do I do for work? Well, I am a Quality Manager in a small machine shop. Yep a factory! The company I work for is very small, less than 25 employees, so I wear lots of hats. I am responsible for all the high level ISO Quality systems, checking all the product that is being made in the plant, working with customers, working with suppliers, programming our CMM, I am the Safety representative for the company, etc... Now in my company we specialize in mid to large sized parts. So we have parts that weigh anywhere from a couple pounds to over 2000 pounds. So, me being a Narcoleptic, I still have to run a $300,000+ machine, while using a crane to lift these parts, and I have to be very detail oriented. I have to be on high alert at all times to make sure I don't slip out of consciousness, I don't want to think what could happen if I lost the fight with my mind and fall asleep while moving a 2000 pound part or crashed my machine. That does not include the concern of me falling asleep while being around forklifts. Or finally what about the risk of me consciously going to sleep and talking to a customer while I am effectively sleeping. Every moment at work there is an increased risk that something could happen with pretty nasty consequences. So, I put every ounce of my being into staying awake and alert. Even with all that effort I still have had two instances, at least that I am aware of, were I lost the battle. The first instance I started to tilt backwards and I could not stop myself from moving. I actually had to reach out and grab a coworker's shirt or I was going to hit the floor. The second instance, I actually fell asleep standing up in my office while going through an ISO audit. No one noticed, but I still fell asleep.
Now all of this effort has some pretty significant consequences on me and my family. The minute I step foot out of the plant I start to crash. One or a combination of the following hit me; it feels like my stomach is in my mouth and I am going to throw up, I get a migraine that makes me light, sound, and movement sensitive, no matter what I can not stay awake, I get shooting pains through out my body, or my entire body/mind shuts down. To make matters worse my wife, oldest son, or another family member has to drive me home, (I work 30 minutes from home).
Most days all I want to do is come home and go to sleep. My stomach is upset, (gas pains, feeling like I need to vomit, etc), my head hurts, (either a migraine or a nasty headache), and I have no energy, (I simply don't have the drive to keep fighting). So the time I WANT to be most awake, it is everything I can muster to simply kind of stay awake.
It is now time to have supper with the family. Like most families we strive to eat as a family at the dining room table. Well that once again is a problem, (remember my three options). I can not sit and eat, so I have to stand and eat. Most days not only do I have to stand but I have pace in between bites. If I don't do that I start to wobble around and risk falling.
Now that we are done eating I still can not stop moving or sit down. Most days my boys and/or wife will go outside of with me. We play volleyball, Frisbee, football, something that keeps me moving. Most days we do this until it is dark because we can no longer see what we are doing, (recently we purchased a LED volleyball so we can play later into the night). Obviously this can not be done all day or everyday, the kids have homework, the weather gets in the way, my wife and boys wear out, there might be some thing good to watch on TV. In those cases I have limited options. If I want to be able to actually be involved with what is going on or really follow the TV show I have to work out. This can happen jogging in place, running on the treadmill, or riding our stationary bike. Once I stop I have about 30 seconds and I will start falling asleep. My other option is to sit in my recliner, recliner and play on my phone. While this will keep me "awake" I can only sort of pay attention to my family or what ever is on the television.
As the day is winding down I have to prepare for bed. Keep in mind I have to be in bed by 9:30 and I can not eat after 7:30 because my medication. I need to get my lunch together, get clothes out for the next day, prepare my sleeping medication, and use the bathroom. Many days I am only able to accomplish using the bathroom because I am so wobbly and unstable because I am simply falling asleep.
Most are thinking, "well at least he is in bed, his day is done". Unfortunately that is not always the case. Many times when I get in bed I start to crash just like I left work. So no matter how tired I might be I don't go to sleep because I am worried I am going to throw up or I am in to much pain. Countless times I have went to sleep with tears in my eyes.
As you can see no matter how stubborn I am and how strong I might feel that I am, I am not always capable to over rule my brains desire to sleep. My brain is more powerful than many of my conscience decisions. While I have found some ways to fool my brain into thinking I don't need sleep, in the end I always end up with the short sale and of the stick.
That is how I would explain how tired a Narcoleptic person is, or at least me.
So far I have given you the "10,000 foot" view of my day. Now I am going to give you an insight into some of the smaller but just as life altering symptoms that I have from Narcolepsy. I briefly touched on my wobbles but now we are going to dig a little deeper into it. The best way that I can explain it is that I can feel myself tipping. I can feel my body rocking forward and/or backward. I am consciencely trying to stop myself from moving. Sometimes I try to bring my toes up but they don't seem to listen. Sometimes I try to tighten my abs but they don't listen. Other times I simply try to lean the other way but my body won't listen. Countless times I have had to grab a wall to stop my momentum. The other times I have had to ask my wife and or boys to give me a shove to get me going the correct way. As I already noted above I have had to use a coworker to keep my from falling. Now when ever I am walking or especially trying to stand in one place I do everything in my power to make sure that there is something within arms reach just in case I tip. Once again my mind is winning the battle. No matter how hard I try I can not keep myself from wobbling.
On top of my wobbles I also get leg weakness. Keep in mind I am able to run on my treadmill for 70 minutes at a time. I can run around outside longer than all three of my boys. At one point in my life I rode my bicycle 5 to 10 miles a day. Short story I have pretty fit legs. With that in mind it is pretty alarming when I can barely walk because my legs are shaking they are so weak or when I completely change my gate. Countless times I have had to stop walking and collect myself because I simply could not walk any further. Again my mind is over riding my want to be awake. It is trying to force me to sleep by making it nearly impossible to move!
So if my body wobbling and leg weakness is not bad enough, Narcolepsy still affects my balance and lower body a little more. The more tired I am and the more I have done the more my knees buckle. Simple put I can be walking along just fine with no issues and one of my knees will simply give out. Put the body wobbles together, add some leg weakness, then put in an added side of knee buckles and walking can become quite the calamity. My bedroom is approximately between 20 and 30 feet from my chair and I have instances where it has taken me close to 5 minutes to cover that distance. The similar theme is repeating itself, I am not able to over come my mind.
Narcolepsy can also affect my head and neck. There are many times you will see me and it appears that I am jamming to some music that only I can hear. Other times it looks like my head has gotten stuck to the back and left or right. Well things are not always as they appear. When I am "jamming" I am not moving my head. Apparently my mind has decided that my head needs to move. I have to tell everyone that they can not watch my head for a yes or no answer because I don't always have control of it, (can you imagine the faces I get when I tell people that). When my head appears to be stuck, almost like it is stuck in a corner, it IS. There are times when I am not able to unstick it. On top of that it hurts because my muscles are spasming which is why it is stuck. Once again my mind has taken away my ability to control my body.
So far I have talked about things that everyone can see but there are still many things that other people can not see. I have already mentioned migraines, but I did not go into much detail. Before being diagnosed with Narcolepsy I use to get migraines. These would plant themselves behind my eyes and hurt BUT I could work through them, (I am pretty sure they were cause by my astigmatism and my computer use at work). Unfortunately the migraines that I get from Narcolepsy, I am not capable to push through them. These migraines are simply debilitating, I need to block out all light and sound; additionally I have to make sure not to move. If I do not the pain is simply unbearable, I can not function. Some times I am able to nap to get rid of the migraine, but not always. Multiple times I have napped or slept through the night to wake up with the migraine still being present and with the same intensity. Sometimes I am able to move enough, basically pulling myself out of a crash, to get rid of it, but not always and many times the act of trying this is more pain than it is worth.
I also have nasty stomach issues. I have already mentioned the urge to throw up but my stomach issues don't stop there. It is not uncommon for me to be in the bathroom 5 - 6 time a day and unfortunately it is not to just pee. Additionally when I am in the bathroom there is no sort of solid consistancy to what I have going on. Think about doing that 5 - 6 times a day, everyday, your backside is not your friend. I have done just about test there is to figure out my stomach issues and nobody knows why I have them.
So far I have touched on physical symptoms, things that you can see one way or another. There are still other ways that Narcolepsy affects me on a daily basis. One of the most troubling things is my memory. I have been able to overcome the difficulties that Dsylexia have posed to my memory, but I have not figured out how to overcome the difficulties that Narcolepsy has presented. As I stated earlier I graduated sum cum laude from college. I was the guy you wanted on your debate team or presentation team. I was quick on my feet, I could speak confidently about a subject even if I did not know much about it. I could use random big words sometimes just for affect. I was able to pull from my base of random knowledge with ease. Today, many times in simple conversations I can not find the simplest words. Other times I simply lose my train of thought, I completely blank and have no clue what I was talking about or why. Worst of all, I struggle to recall just about anything. You don't have to worry about me using random facts because many times I can't remember important family events. Imagine how you would feel if you could not remember the births of your children. There are many days that I can not! Many days I feel like Narcolepsy has taken me from a relatively intelligent person and turned me into a person that never attended a day of school in my life. Yes, logically I know this is not the case, but when I have episodes all logic goes out the window. Again my mind has taken control and does not allow me to access the things I want, when I want it.
So far I have discussed things that everyone has potentially dealt with at one point in there life. There are still yet a couple things that are not commonly seen in the average person. The first thing is automatic behaviors. What are they you ask? Well they are things that you do subconsciously while having no knowledge of it consciously. The worst thing is that I never know if or when they happen because I am effectively sleeping consciously. Essentially to me, I have lost that section of time, what ever I did during that time does not exist to me. One example of this was when I was out taking a walk by myself. I was in a city an hour away from home attending training. Because I was unfamiliar with the area I had a very defined walking path. I could see an intersection not far from me, (I would guess less than 1 minute away) and I knew I had to turn at it. Well I walked and walked, but I never got to the intersection. I stopped, I looked around, but I could not find the intersection. Knowing standing in one place would not get me anywhere I kept walking. Eventually I figured out, I did turn at the intersection as I had planned but I did it subconsciously because consciously I was sleeping. Can you imagine the feeling of being lost, in a city your unfamiliar with, and having no other option but to keep walking and hope you figure it out. I have other examples but they are all similar, while I thought I was awake the entire time I was not. Because of these behaviors I no longer do anything alone. Because of these behaviors my wife no longer feels comfortable leaving me home alone and I can not argue with her. Talk about humbling, talk about losing control, talk about the power of your mind!
Last but not least I have hallucinations, some auditory, some visual, and some tactile. Probably my worst hallucination was an auditory hallucination. While I do not have the scary vivid nightmares that other Narcoleptics have, in this case I wish I did. My family and I were eating diner at the table. My middle son was singing a song that was driving me up a wall so I told him to stop, so he did. When everyone was done I went into the living room. I heard my son singing the same song, so I yelled at him to stop and he did. Within seconds he started to sing the song again. Now I was MAD, he just ignored me for a third time. I really yelled for him to stop. Within seconds my wife and son walk around the corner with a puzzled look on their faces. They were talking and he was not singing. Talk about a blow being a parent. I just yelled at my son, really yelled, and I was imagining what happened. I now question everything I know and think because I am no longer sure what is real or not.
Having Narcolepsy has taught me many things. One of most powerful is to cherish every moment like it is your last. In my case I am no longer sure what is real verse imagination. Other times I don't know if I am going to lose time or not. With so much uncertainty, those moments that are real, they must cherished and cherished in the moment. Why in the moment, who knows if I will be able to recall them later. Another thing I have learned is that you can not BEAT your mind. In the long run you will always have end up in second place. Case in point, no matter how many coping mechanism I come up with to stave off a crash, sooner or later my mind WILL force me to sleep. One last thing that everyone can learn, is to not judge a book by its cover. Just looking at me you would never know I have a strange debilitating disease, but I do and it affects EVERY aspect of my life.
Not all is bad. Yes, I have lots of negative things going on, yes my life has gotten exponentially harder, BUT my close family has been there with me the entire time. They have stuck with me. Yes, I am in a constant state of motion, yes it sucks, BUT I have more stamina than pretty much everyone in my family. I can jog and jog and jog. Recently while playing tag with my children I was able to catch a kid in his late teens. He confidently pronounced, "I GOT this!" when he found out I was it. Within 30 seconds not only did I catch him, but I was able to jog back to the rest of the group who were playing tag and the confident teen was not able to play for a while.
There are other things that pop up here and there like random shooting pains in my joints, random shooting pains in my muscles, shooting pains in my feet, etc... I have heard many people say, "I could not do what you do!". I have heard other people say, "I don't know how you do it!". I simply look at them and give them a simple answer, " I will NOT quit!, That is how I do it.". While yes my mind has won many battles, most days most of the battles, it has not broken my will. It has not broken my drive to continue to push on, to continue to help my boys grow into well respected men. Narcolepsy may eventually take away my ability to work, but it will not destroy my self worth. While Narcolepsy dictates many things in my life, it might make me question reality, it will never break me. I WILL have BAD days, but I will ALWAYS bounce back! Narcolepsy will not take me away from my family because my will to keep going is stronger than the control that my mind has taken from me! Narcolepsy, will only make me a better me and help me raise my boys into the best MEN that they can be!
When I first heard my diagnosis of Narcolepsy, I was up beat and positive. My doctor told me you might have to take some meds during the day and at night, but don't worry it is controllable. For many with Narcolepsy he was correct, unfortunately for me he was not. I have sense seen some where around 4 other specialist with the most common theme being they have no idea. I have heard countless times that I have "non-standard" symptoms. I have had to many bad days to count. I have had to many instances where my mind won the battle. BUT the war is not over! I still get up everyday and do the best I can. The war will NOT be over until I no longer have the WILL to fight. Well, I will NOT quit fighting and as long as I have my wife and three boys my WILL will NOT falter. I was not wrong when I said the mind is strong, but it will never be strong enough to break your will. My will is STRONGER than my mind, I might never win the war, but it will never end because I will never stop fighting!
James M. Funk III