Narcolepsy can be a dibilating disease. Yes, there are much uglier diseases! Yes, there are diseases that have a much uglier end game! BUT, that does not mean that Narcolepsy can not be debilitating!
My form of Narcolepsy has altered the trajectory of my life. Originally when I got the diagnosis I thought that things were going to be all good. I was going to get some medications and my life would go back to being "normal". Soon, I thought, soon I would be the me I always use to be. Well, I was wrong, but not in how most would think. I am still me! I am still the happy go luck guy I have always been. I am still that guy that jokes around. I am still the guy that is willing to help anyone that he can. I might not be able to do all of the things that I did before, but I now have more time to help others. I think my new purpose is to help others deal with Narcolepsy and how it has affected their lives. Believe it or not I have come to terms with Narcolepsy and how it has affected my life. I still have my bad days, bad weeks, etc but all in all I know where I am and I know all is not lost. I think that I can help others not only deal with Narcolepsy but how to keep moving forward. There are multiple things I feel that I can do that will help others: 1. Share my story - my hope is that by writing and posting my blogs that it will help others see that they are not alone 1a. Share my story - I am working on writing a short book - the basis of the book is how Narcolepsy has affected my life, the book is not scientific just how Narcolepsy has affected me since I was young - just my personal thoughts and feelings 2. Speak with others - I am willing to speak with others, in person, on the phone, on the Web etc. If nothing else if I can provide a sympathetic ear. An ear of someone that can relate to many similar things without judging. It is amazing how much it helps to talk with someone that not only listens to you but understands on a personal level what you are going through. 3. Speak to others - I had the ability to attend a wellness retreat last year. There were many great things that happened there, but one of the best things was when I got to speak to the entire group. While I don't always feel my story is the most interesting, it still has some power. After speaking I was truly amazed at how many people came up to me and said they found my story uplifting to them. I was amazed at how helpful me speaking my mind and sharing my experiences can help others. My new purpose is to be me! I am that funny person that helps anyone that wants it. I am going to help. I will keep posting my blogs, I will continue my book, I will help! If I get the chance to speak to a group again I will do it with out hesitation. If I get the chance to help speak with others one on one about Narcolepsy I will do it. Narcolepsy may not be the top story in the news, but that does not mean it is not important. I will do everything with in my power to help others and to ensure that Narcolepsy does not go unnoticed!
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Eat, sleep, go to the bathroom, repeat.... This is the pattern that is usually associated with babies and animals. How many times have you heard someone say that they wish they could live there lives like that? How many times have you heard someone say they wish that they could go back to being a kid?
I, for one, made those statements multiple times. I made those statements truthfully, I complained about having to be an adult, I complained about having to do adult things. I wanted to have the simple routine of eat, sleep, go to the bathroom, repeat... I wished for simple things. Well I have that simple life. I can no longer work, I don't have to worry about being late for work, I don't have to worry about getting all of my tasks done at work. BUT I am not as happy as you would think. I crave to have an adult life again. I crave to have the worries of an adult. Yes I still have bills to worry about, but I no longer have the ability to do anything more to help. My income is what it is and I can not change that. I am still my children's father, but I can not provide all of the things I could do in the past. Currently my life is real similar to that of a baby. I eat, sleep, use the bathroom, repeat.... Just like I pined for not that long ago. I no longer wish for that simple routine. While I don't necessarily want the routine of work again, I don't want the routine of a baby or animal. When someone says be careful what you wish for, they are telling the truth. I can personally attest to that. I still have my family, I am still a father, I am still a husband. I still wake up everyday. BUT I want to feel useful again! I want to feel like I once again have a purpose in my life! I will never stop fighting! My life is pretty simple these days.
When awake, (awake is a pretty strong word) I am either eating or in pain. For the past year plus awake meant constant movement but I can not force myself to move. When I do manage to force myself to move I am either in more pain or my fatigue ratchets up to the point that I feel like I am going to drop. No movement is bad, I know it but I have simply lost my drive. I am putting on weight, my fatigue is worse, but I can't seem to make myself move. Instead of moving what do I do, either stuff my face or sleep. Which in turn makes me gain more weight and makes me more tired. On top of that I am getting more pain. You would think the lack of movement would be good for me. I am off my feet for once, but alas it is not. Last night I was almost in tears my hip hurt so bad, but I don't know why it hurt. I am getting more shooting pains. I am getting more pain behind my eyes. So right now the stages of my day are simple; sleep, eat, be in pain, repeat.... I am sleeping close to 12 hours a day and I still can not find the drive to do anything. Yes, if I had my prescriptions it would be easier, but ultimately that is an excuse. How do I get my drive back? I worked way to hard to get into decent shape again to let it all go but I don't know how to overcome the 24/7 urge to sleep and/or the pain that seems to hit me almost as much as the urge to sleep. How do I win the battle with my own mind? My stubbornness seems to have left! I am still greatful that I get "up" each morning, but I am not really sure that I am ever really awake. Unless of course being in a constant state of zombie is awake. I use to complain and complain about how my meds did not work. I was always tired and it was hard for me to push through every day. BUT I was able to make it work.
Now the farther I get from having meds the more and more I slip back. I have used movement for my coping mechanism for probably a year now. There has been consequences to all the movement; sore feet, pain in my knees, pain in my legs, etc, but I was able to push through. Yes my feet hurt in the morning but once I got moving I was ok. With out my meds my feet are starting to hurt 24/7. The pain is becoming more than just a nuisance than it was with my meds. Now my feet hurt if I am doing something and they hurt when I am off them. They are starting to hurt the majority of the time. I know why, I have to move to stay awake and that movement does damage to my feet. BUT I am not sleeping correctly so my body does not recover properly. Because of this I am compounding the daily damage to my feet with no reprieve. The more tired I get the more shooting pains that I have. This happens because it is a method my mind uses to try and force me to sleep. When I was medicated, while I was still tired, I got some sleep. The less sleep I get, the more shooting pains that I have. Well I am sleeping less and less, (good restorative sleep) so my mind is trying to force me to sleep more and more. Because of this I am getting more and more shooting pains. Some times these pains are a minor bother and some times they really hurt. I have had them stop me in my tracks as I have to gather myself to deal with the pain. Adding to the additional pain, (foot and shooting) and the increased fatigue/tiredness and my drive is gone. All I want to do is eat or sleep. I am starting to pay for this as I am putting weight back on. I know how to "fix" it but I just can't seem to force myself to do what needs to be done. I might be as stubborn as a mule but right now that is not enough. It sure would be nice if my insurance would stop acting like they know more than my doctors. I am still greatful that I wake up everyday! I know thinks could be much worse for me, but I am struggling. Pain, fatigue, no drive, and the constant want to sleep are becoming to much for me to push past. I will wake up tomorrow and I will keep fighting! What happened to famiy?
At 36, I don't feel that I am young or old. With that in mind it seems like eons ago that family was really family. When I was a kid it was not uncommon for kids to play outside with each other. The kids on our block might not have been blood but they were your family. You did everything with them. You would play outside, play video games, mess with those you liked, give each other a hard time etc. Many times your parents would come outside and play with you. I can remember countless times playing badminton, frisbee, football etc with my blood family and block family. When I wanted to go somewhere my group of friends would walk or ride our bicycles together. We went everywhere together and did everything together. When we did not get along with each other we took care of it amongst ourselves with our hands. There was no need for any sort of weapon, you duked, licked your wounds, and with in a couple days patched things up. You did not need anything else because with family your goal was not to end them or hurt them, but to prove your point. Today, there is no family. You no longer have the block family. It is now uncommon to see groups of kids playing outside and even more uncommon to see kids playing outside with their kids. Countless times when my children and I play outside strangers will stop their car as they drive by to say how refreshing it is to see us playing together and outside. Today there is so little togetherness. How is it that within one generation of kids things have changed so much? How is it that society has changed so much with in one generation that family has changed so much? When I was a teen, my community had its issues but no one was afraid to be outside. We loved to play outside. We used the street lights to provide us with the light we needed. If we needed to go somewhere it was common for kids to walk or ride their bikes. We were not afraid of getting hurt. 18 years later my community has done a one eighty. Parents don't want their kids to walk anywhere on their own because they are afraid for their safety. Many times even the kids don't want to walk because of what is going on. Our kids now have to complete drills at school to ensure their safety in case someone with a gun enters their school. Our schools now commonly have metal detectors. Kids are killing other kids with guns. What happened to an old school fist fight? What does it prove to take another person's life? How has society slipped to the point that killing each other is the norm? What happened to family? As a country we like to claim we are world leaders. As a country we like to point at other countries and complain how brutal they are. As a country we like to say how good we are. In my opinion we are no better than anyone else. We have our own issues and it sure does feel like we are quickly spiralling out of control. Everyday we kill more of our own and it feels like the only thing that is done about it is verbal posturing. It is time for all of us parents, no matter what our circumstances to step up. It is OUR job as PARENTS to step up and be parents. We are NOT hear to be friends to our children but to be their parents. We need to help them understand that killing is not the answer. We need to help them understand that FAMILY is key. We have to stop being so short sighted and remember that our children are the most important thing to us and it is our job to teach them. It is time for US to be part of the solution not part of the problem. As PARENTS we have to stand up and take our kids back and show them how to live their life with respect and honor! I am having a rough couple of weeks. I am off of most of my Narcolepsy medications because apparently insurances knows better than my doctor. Insurance is also forcing me to find another new specialist for Narcolepsy even though my current one is probably the best that I have had so far.
Because of my lack of medication my symptoms are on over drive. My memory is worse than Dory on Finding Nemo. My knees seem to buckle more than not. My drive is in the dumps. I am putting on weight..... On top of all of that for two nights straight I have been up at 2am, of course I could go back to sleep to only wake up 5 minutes later. So yep things have been rough, BUT.... All is not lost, I STILL woke up this morning! My family has food in their stomachs, a roof over their heads, and all of their basic NEEDS are met. I get to spend more time with my family than I ever have. Are things rough right now? YEP! My family is still facing an up hill battle. BUT we ALL woke up this morning, which gave us the ability to fight that battle. I think going forward all of my blogs will end with one simple statement. When I am having a bad day and people ask how I doing I will use the same statement. "I woke up today and I still have the ability to fight!" Even on our worst days we should all remember that at least we had the ability to fight. So.... As I stated above it is time to end this particular blog. "I WOKE UP TODAY AND I STILL HAVE THE ABILITY TO FIGHT!" Everyone knows that sleep is important. We all have had those days were we did to much or we stayed up to late and the next day we are completely wiped out. More than likely everyone followed up those days by saying, "Man, I won't do that again!" My question is do you really know how much sleep affects your life? Not just on those long days but how it affects your entire body.
To help highlight how sleep affects you entire body I am going to provides some personal examples. - Memory - you sleep is when you set your memories. When you get proper sleep you file everything away where it should go. For example if you hang your keys by the door everyday when you come home, you always know where to go to them. If you don't hang them there you have to search everywhere for them. Now think about your memories that way. If you always put your memories about, say your children in the upper left sector your mind, you can always go back there to find them. If you don't sleep properly you put them, where ever they might fall. When you attempt to access that memory you have to search for it because it is not where you normally put it. In my case I struggle to remember most things. In many cases I can not remember what happened less than a minute ago. Recently I have been struggling to remember the score in a game of ping pong from one point to the next. At the longest this is probably a minute. - Healing - when you get proper sleep your body restores itself. As you relax and kind of shut down your body can focus on healing and repairing whatever might ail it. When you don't sleep properly you body does not have a chance to heal itself correctly. Because of this it might take you longer to get over a cold or it could take longer for cuts/bruises to heal. Your body is always one step behind because it is not allowed to perform to it's fullest. When I take my medications, (when I have them) I heal like the average person. When I don't have my meds it takes me forever to heal. I can have a small cut that can take a month to heal. Medicated I would heal in a week. Muscle Control - strange thought but true. When you body/mind is exhausted it's primary task is self preservation. To accomplish this your mind attempts to force you to sleep. One way it does this is reduce the control you have on your muscles. No matter how strong you might be you will have only have limited use of your muscles. This could show itself in weak legs, causing them to shake when you walk. Or possibly weak arms, making it difficult to lift anything. In extreme cases your mind can force you or fool you into thinking you are in REM sleep. During REM sleep you mind shuts off all voluntary muscle control. SO, while you are awake you won't be able to use your muscles. This can be as simple as your knees buckling or your speech being impaired. But it can be as extreme as you losing all muscle control and you collapsing to the ground. For me I have knee buckling and leg weakness. It starts with knee buckling. I can simply walking across the room and me knee will give. Sometimes it is a minor buckle and it is simply a nuisance. Other times the buckle is quite severe and unless I have something to grab onto I will fall. At it's worst my legs will shake as I walk, my gait will change, and I will have severe knee buckling. If you see me walking during this time you would think I was a 100 year old man. I shuffle my feet and walk real slow to try and make sure I don't fall. Focus - as your sleep deficit grows the harder it is for you to keep your focus/concentration. Think about those days that you pulled an all nighter and then had to function the next day. It is extremely hard to maintain focus. You mind wants you to sleep and that is it's sole focus. Because of that when you try to focus on something else to keeps slipping back to sleep. You mind might also cycle through other things in an attempt keep things fresh. It does not want to do anything monotonous in fear of going to sleep. How many times have you read or heard in the news about college students taking drugs to stay awake to study. Why do you think they are doing that? For me unless I have LOTS of things to work on I struggle to stay focused. If I only have one thing to do with no time line, good luck, I won't get it accomplished. I have to have laser focus on what ever I am doing or I simply won't get it done. Temperature Control - I don't know how sleep affects your body temperature, but I do know that has an affect. For me I use to be able to handle heat pretty good. As a young adult I worked in a foundry and overall was able to handle the heat. Now if it is a hot day outside, no where near the temperatures in a foundry, I struggle. My drive drops quickly, my stamina is gone, and the heat overcomes me quickly. Additionally while I have always been a hot person I now get even warmer. I can be simply standing in place and my body temperature will spike to the point that I will start sweating even though I am doing nothing. Speach - this kind of falls in memory and focus. When you are extremely tired talking can be a chore. You easily lose your train of thought or you lose the word you are looking for. This happens to me pretty much in every conversation that I have. I can be talking to someone and BAM, I forgot what I was talking about. Sometimes when I try to address someone I simply forget what there name is. Or while talking to them I will forget their name or the name of the person I was talking about. Weigh - sleeping properly helps get your metabolism going for the next day and while sleeping your burn calories. If you don't sleep properly you metabolism slows down and instead of burning calories your body stores all your food in fat cells. Additionally because you are tired you have to drive to do anything. Because of this you tend to sit around and do nothing to get your metabolism going. Myself I know that if I don't keep moving I have no metabolism at all. My weight fluctuates greatly and that normally corresponds to how much activity that I do. I have actually lost and gained 100 pounds three times in my life. Bathroom - I am not sure why but as your sleep deficit grows you can have problems in the bathroom. Many people with sleep issues have IBS. In my case I have had bathroom issues for as long as I can remember. I have done multiple tests and the doctors have found nothing wrong. The only thing that I can point to is that Narcolepsy is what has caused these problems. Micro Sleeps - when you get tired enough, no matter how hard you try your mind can force you to sleep. This means that you might fall asleep for a couple seconds and/or minutes but have no idea that it happened. During these sleeps you still perform tasks but obviously not very well and most people are not aware that you are sleeping. I have had conversations with people and not known about it. I have run with my son and slept through part of it. I have went for a walk, by myself, and then experienced a micro sleep. Imagine going for a walk in a area you don't know and falling asleep. Then waking up, not knowing you fell asleep, and being completely lost. Been there done that. Hallucinations - when your mind gets really tired it does lots of weird things. Some people see, hear, or feel things that are not actually there. Probably the most desturbing hallucination I had was when I thought my middle son was singing. I yelled at him twice, the second time quite harshly. It turns out he was not singing and I know this because my wife was talking too him. Still to this day I remember him singing. There are many other things that can and do happen when you don't get enough sleep. My goal is not to make anyone feel bad for me or pity me, but to help you understand the importance of sleep. Sleep is not something that you should just brush off or think you can make up the next day. Burning the candle on both ends for to long can have some pretty nasty consequences. Take it from someone that is not able to make up his sleep deficit, don't put yourself in a situation where you can not catch up. Sleep is just as important as eating and drinking are to your well being! We all know that sound, WHIFF! You know the sound of someone swinging a bat and missing the ball or swinging a racket and missing the ball.
I have always had pretty good hand eye coordination. This could be all of the video games I played as a kid or possible all of the casual sports I played and play outside. I have always had pretty good hands when coming to catching balls. I have always been serviceable at badminton, volleyball, ping pong etc. Less than a month ago Anthony and I built a full size ping pong table top, (we built a top because we can put it on top of my pool table, unfortunately I am not able to use my pool table much - imagine trying to aim when you are swaying back and forth or when you head is in constant motion, it does not work so well). The entire family has been playing quite often as it is fun and it keeps me moving. This provides me with something fun to do that does not feet. Recently I swear I swing and miss more than I hit. Now I know that is not the case but it sure does feel that way. I know sometimes I swing and miss because my opponent made a good shot. But I have had way to many times where there is no reason to miss. Is Narcolepsy starting to sap me of my reaction time? Is my lack of medication starting to catch up to me to the point that even playing ping pong I am starting to fall asleep? I don't know what the cause is but I have had my fill of this disease! I don't want to WHIFF, I need to make my opponent WHIFF! In ping pong obviously that is simple. In life, I WILL make Narcolepsy WHIFF, it is winning this round but it will NOT win the match! Earlier today I posted about having a crappy day and not sleeping.
I can not deny I hate giving in to sleep, I loathe the fact that I can not always win the battle. That is still the case for today, but not all is bad. YES, I had a bad night! YES, I was zombie like for a large chunk of the day! YES, I took multiple naps! BUT, I was able to stay off of my feet. Instead of putting 25,000 plus steps on my feet like I do everyday I only got 3,000 steps. While I might not like the fact that I was extremely tired today. I don't like the fact that I was forced to sleep more than usually. My body appreciates the fact that I did not over tax it once again. Long story short my extreme tired might have made my day longer and harder than normal, it was probably the best thing for me. Some days you have to look past the obvious and look at the entire picture. My picture today is that I probably needed this day. Not all is as bad as it seems! What do you find to be valueable? Most people default answer is is a material object, think money, a fancy car, big house etc).
For me besides family the thing I value the most is sleep. But not just any kind of sleep, I value god restorative sleep. I would give away any of my material goods for a couple goods nights of sleep. I would give any material item to wake up, just one day, in the morning feeling like I am alive. I would give any material item to have had enough restorative to be able to simply sit in my chair and watch one 30 minute TV show. The key though is that I won't have to jog in place or use any electronics, I simply want to sit and watch a TVshow without falling asleep. Recently I had finally gotten into a good rhythm with my medication and sleep pattern that I was no longer getting random insomnia. Unfortenately I am out of most of my medications, (changing insurances, doctors etc) and last night my sleep was horrid. I crashed hard at about 10:00pm, I felt the crash coming but I thought I could push through. Boy was I wrong, I ended up curled up in a ball on my recliner because my stomach hurt so bad. I was afraid to open my eyes because it would make my stomach worse. I did not want to keep my eyes closed because they raced back and forth increasing my stomach issues. The constant eye movement also made them hurt, but it was better keeping my eyes closed than opening them. Thankfully my wife was a big help. She got me some blankets, my cell phone and headphones (I use the phone for white noise), and shut the lights off. Unfortenately I woke up at midnight because I had to use the bathroom. That was quite the chore as I could not keep my eyes open and I was stumbling all around but I managed. Also as it apparently took to long to use the bathroom my stomach started to turn into knots again. Either way I managed to get back to my chair and try to go back to sleep. Well, tried is the key word because I could not go back to sleep, (imagine that the guy that can sleep at the drop of a hat could not sleep when he was supposed to). I was up for 3 hours, my eyes burning out of my head, my eyes continually drooping, but I could not fall asleep. Fast forward to to about 7:30 this morning and I wake up. I try to go back to sleep, without getting out of my chair but alas I can not. I decided to get up and use the bathroom. Well that again proved to be a chore. My wife assisted so that I did not fall on the floor. Instead of walking my kids I attempted to go back to sleep in my bed. But that was not really in the cards. After tossing, turning, and waking up about every 5 minutes I gave up and got out of bad at 8:05. Technically I am awake but I was more aware last night at 1am than I am now. All I want is to feel like a person for one day, even for 30 minutes without me having to do something crazy. I VALUE good sleep above ANY material thing. Most people that I have met that have Narcolepsy echo one common thought, they feel alone. They feel like no one understands them and what they face on a daily basis. If nothing else they wish that they could meet with other people that share their diagnosis.
Well you are NOT alone! Even if your loved ones don't truly understand what you face everyday they still care for you. They still want to try and help you. The problem is that they don't know how. Think about this.... When new parents have their first kid they don't know all the answers. In many cases they are completely lost. When their baby cries they try everything they know to soothe it. Unfortunately sometimes they don't know how to help their baby. Their baby probably feels alone, feels like nobody cares. We all know this is not true but that baby does not. Essentially we are that baby. Our loved ones do not understand and when they don't understand they start grasping for straws. In some cases they lash out and say you are lying. In other cases they will simply ignore you. Possibly they stand by you side but do so silently because they are lost. You have to keep one thing in mind, THEY DO CARE! They are just lost like those new parents. They are lost and they don't know what to do. As odd as it sounds it now becomes your job to help THEM understand. If nothing else helping them will give you purpose, it will give you something to focus on. It will help you temporary put you symptoms on the back burner so that you can help them. Once they finally understand what is going on they will never leave your side again. I will not lie, this will be hard. This might take some time, but as I once heard, ANYTHING WORTH HAVING IS WORTH FIGHTING FOR! FIGHT to help your loved ones understand! FIGHT and you will not be alone. Until that battle is done remember that there are others just like you and they will help you. You are NOT alone! You are just like that new born, others just don't understand you. This will NOT always be the case! KEEP fighting, KEEP getting up everyday, and remember that you ARE not alone! I always complained that my medications did not work. I followed it up with, yes I know they make a difference but they still don't work.
Well with my change in insurance I now know that the meds did in fact do something. Now that I almost have no meds left I am pretty much struggling to do anything. My drive is non-existant, lack of drive is probably a better way to describe it. I guess my lesson learned is to not complain about what I have. I was not happy with the results from my meds but they sure where better than nothing. We all can learn something from this. Even if you don't like what you might have, don't discount it, things can always get worse. Lesson learned! I have primarily blogged about negative things but today I think I will post something positive. So I think I will talk about the positive changes Narcolepsy made in my life.
1. Fitness - Movement is the only sure fire way for me to stay awake. With that said I get a lot of steps everyday, I am averaging 20,000 to 25,000 steps a day with many days being north of 30,000. BUT, the side affect to that is that I am in pretty good cardio shape. I can run 4 miles at a pop and while my feet don't like it I can outlast all three of my kids playing outside. Also my calves are so fit that my son has taken a picture of them to show his friends at school. Probably the best change is my blood pressure. Even though I am on multiple stimulants and a very high salt content medication at night, my blood pressure is probably more stable than it has ever been. So, yes, the reason for the movement sucks, one of the outcomes of it is very good. 2. People - I have met more inspiring people in the last year and a half than I had met in the previous 30+ years of my life. Some of these people have the same diagnosis as me, some do not, some don't have a strange diagnosis at all, but many of them are very inspiring, good people. I would never have had a chance to meet these people if I was diagnosed with Narcolepsy. 3. Experiences - Because of my diagnosis I was invited to a retreat in Virginia. At this retreat I was able to do some fun things, (make a painting, get a chair massage, see some great entertainment, meet Steve Gililand, meet lots of people, etc.). I get to travel near Chicago once a month for a support group meeting. During this monthly travel my wife and I have explored the lake front in all the seasons. One memorable experience was when we got to walk on the ice build up on the shore. We got to see lots of very cool ice and rock formations. We have also been able to experience some very good restaurants. If I was not diagnosed we would have no reason to go near Chicago as often. 4. Family Time - Because of Narcolepsy I am no longer able to work. While in some ways this is a very big negative, in one way it is a HUGE positive. I can now use the little energy that I have on my family not work. I no longer have to worry about calls or interrupt family engagements for work. I can give my family everything that I have! So, yes Narcolepsy sucks at best, but it has made some positive changes to my life. I would not wish it on anyone but it has not ended my life, it has simply forced major changes. I can either embrace those changes or I can run myself into the ground trying to fight them. I choose to embrace them and get the most out of my new reality. In my opinion all of us can learn from this. In many cases it is better to embrace your new reality and enjoy it, than to hold on to your old reality. Isn't it better to enjoy what you have than to mourn what you have lost? What is a hero? Most people lean towards big name people in history, athletes, or the big name of the day. To me I think that the everday hero is more powerful. To me just a normal everyday person has more power than the traditional hero.
A couple months back I had the pleasure of attending a very good conference where I met multiple heros. A couple that really stuck with me are the following: - The first was a man that had been through many things in his life. He was injured at his job, he had a disease that was affecting every part of his life, BUT he did not lose his love of life. While he had multiple reasons to be down he refused to stay down. During the conference he kept the jokes flowing and the smile never left his face. To me, that is a hero, even though he has a right to be down instead he chose to keep everyone smiling. - The second was another man that has the same disease as me. The strangest thing was that he felt he did not have the right to feel bad about his disease because it was under control. He almost felt bad because he was not as bad as others. Again to me that is a hero. This man has an incurable disease but he felt he did not have the right to speak about it. He felt his worries were not worthy. He put others concerns above his. We all can learn from that. - The last was a wife of a man that had a very serious lung disease. She stayed by her husband, supported him, she did everything that she could to help him. But that is not why I see her as a hero. During one presentation she was struck particulary hard by what was said. She did not leave the room, she did not try to run from what she heard, she showed her emotions for all to see. She showed all of us that is ok to show our emotions, she showed us that it is ok for us all to feel bad. To me that makes her a hero. There were many other heros in that room, the three above are simply what comes to mind today. The lesson is really that anyone can be a hero. To be a hero you simply have to affect someone's life in a positive way. We all should strive to be an everyday hero and look for the hero in everyone else. It is your turn to be a HERO! The question I posed above is not concerning the power the name holds for its owner but for the person using the name. An abstract thought but yet a very meaningful question.
We all remember laughing when are grandparents and even parents go through a list of names trying to remember ours. I am sure we all also remember later talking to our family members and friends and laughing about how funny we thought these encounters were. But, did we ever think about how this made our family members feel that we were laughing about? Did we ever think about the toll it took on them everyday as they were not able to find the names of their family members? I for one did not, I thought it was hilarious. I can remember countless times when my grandmother would rifle through all of her children's names and then grandchildren's names as she tried to find the appropriate name for the person in front of her. Unfortunately many times I made fun of my grandmother in the moment, laughing, grinning, slapping my knees, simply acting a fool. I mean come on it was hilarious! Or was it? Fast forward many years and now at the age of 36 I do the same thing as my grandmother. I only have three children and no grandchildren and the majority of the time I get their names wrong. When I was working many times I could not remember my coworker's names so I simply did not greet them and just started talking. I can tell you from my own personal experience this SUCKS! I can tell you from my own personal experience that some times you simply feel like you are losing your mind! It is as awful feeling. What I have I learned about all of this? We all should really stop and think about how our actions and words might affect others! Just because we might think something in funny, that does not mean that we should make light of it. Just because we joke with someone about something they are doing and they laugh, it does not mean that it does not hurt them. This does not mean you can not laugh and have fun. This does not mean that you can not joke with people. What it means is, you have to THINK before you do anything. Think about how your actions can affect others. THINK about how others might feel about your actions. Everything is not as simple and cut and dry as it seems. |