I do find it mildly amusing that I am still caught off guard when I crash. Even though the last two weeks have been insane, I actually wondering at times today why I was so tired. Seriously! I got upset with my inactivity around Noon today and began to get angry. I hadn't done anything physical or mental, so I decided to castigate myself. My self-interrogation began with the stern question, "How can you be this tired?" Fortunately, saner parts of my mind prevailed at that moment. In the awkward pause that followed, I began to laugh. Why am I tired? Well, it could the psychotic hours that I have kept over the past two weeks.
The great thing is that, in my moment of realization, everything fell into place for the day. I was still exhausted and unproductive, but I found peace within it. Having that insight allowed me to be okay with the physical and emotional state of my body. I have had an unnerving two weeks. I pushed far harder than I should, and I even survived intact. I earned the right to collapse. I even rallied later in the day and had a wonderful evening with my daughter.
We went to an amazing show at my school. Every year the drama department hosts a 24-hour "Create-A-Play." Students write, direct and perform short plays, all within a 24-hour period. The shows were wonderful, and my daughter loved them. She thoroughly enjoys performing and creating herself, so I could see the joy in her eyes as we watched my students. When we got home, I even managed to clean up the kitchen.
Every day, I feel like I take one more step down the path to understanding how to live with narcolepsy. I don't think I will ever figure out every twist and turn along the way, but it does seem that the journey is a tad easier than it has been. Maybe the biggest accomplishment of the past year has been my ability to acknowledge my own needs and to accept them honestly. Even a few months ago, I would have wracked myself with guilt on a day like today (actually yesterday now). Rather than abuse myself, though, I owned the state of existence that I was in. Somewhere in there, I am sure that I got a bit wiser.
Saturday, September 20, 2008
Thursday, September 18, 2008
Beyond Blessings
For the first time in nearly two weeks, I do NOT have to go anywhere this evening. I find that amazing and wonderful. It also makes me wonder how I have survived these past two weeks. Yesterday, I literally "worked" from 7:30 AM until 11:30 PM. Somehow, I had assumed that sixteen hour days were a thing of the past. The strangest part came around 9:30 PM. I arrived home from my advisory meeting for my daughter's school and knew that I still had hours of work to do. Rather than collapse, though, I sat down and did more correcting. It has been years since I have found the strength to do that.
Now, I have no interest in making sixteen (or fourteen, or even ten) hour days the norm in my life. I lived that nightmare far too long. At the same time, I find it fascinating that I have not succumbed to a horrid virus because I have been working at an insane pace for the past two weeks. Clearly, God is watching out for me. I also know that I am getting better a pacing myself within the framework of my day. While I "worked" sixteen hours on Wednesday, I also found spaces within the day to relax and heal. That said, I firmly believe that deeper concepts are also involved.
I have thought for many years that God is present in daily life. We simply need to be open to God's love. For whatever reason, I am more open these days. Some of it is my own journey. Each day, I come closer to recognizing that I am nothing more than a traveler walking the long road of life. The things I don't know greatly outpace those few items that I do comprehend. As a result, I seek for wisdom and guidance far more fervently than I did in my youth. Beyond my own willingness to receive God's strength and aid, though, I certainly benefit from the magic happening in my classroom at school.
My teaching colleagues and our students are incredible. Both instructors are gifted educators who strive to make each moment better than the last. They also drive themselves to place our students first, each second of every day. It is stunning to be a part of the dance. Even cooler though, is the synergy that is beginning to percolate amid our young charges. Though the year is barely four weeks old, I can already see some brains coming to life with insights that greatly belie the young ages of the bodies that hold them. All of it makes me want to dig deeper and push harder. I continue to listen to my own body and soul, honoring its limits, but I also revel in the joy that teaching is bringing me again.
I am not foolish to think that every day will be paradise, nor am I crazy enough to think that plenty of horrible days will not take place. Still, I love that after years of wandering in the desert, I have stumbled into an oasis that not only reminds me of what I have always loved about this insane profession, but also inspires me to give what I can to make the world a better place. Coehlo in The Alchemist tells us that the universe conspires to aid someone in pursuit of his Personal Legend. The way things are going of late, I am fairly sure that he knows exactly what he is saying!
Now, I have no interest in making sixteen (or fourteen, or even ten) hour days the norm in my life. I lived that nightmare far too long. At the same time, I find it fascinating that I have not succumbed to a horrid virus because I have been working at an insane pace for the past two weeks. Clearly, God is watching out for me. I also know that I am getting better a pacing myself within the framework of my day. While I "worked" sixteen hours on Wednesday, I also found spaces within the day to relax and heal. That said, I firmly believe that deeper concepts are also involved.
I have thought for many years that God is present in daily life. We simply need to be open to God's love. For whatever reason, I am more open these days. Some of it is my own journey. Each day, I come closer to recognizing that I am nothing more than a traveler walking the long road of life. The things I don't know greatly outpace those few items that I do comprehend. As a result, I seek for wisdom and guidance far more fervently than I did in my youth. Beyond my own willingness to receive God's strength and aid, though, I certainly benefit from the magic happening in my classroom at school.
My teaching colleagues and our students are incredible. Both instructors are gifted educators who strive to make each moment better than the last. They also drive themselves to place our students first, each second of every day. It is stunning to be a part of the dance. Even cooler though, is the synergy that is beginning to percolate amid our young charges. Though the year is barely four weeks old, I can already see some brains coming to life with insights that greatly belie the young ages of the bodies that hold them. All of it makes me want to dig deeper and push harder. I continue to listen to my own body and soul, honoring its limits, but I also revel in the joy that teaching is bringing me again.
I am not foolish to think that every day will be paradise, nor am I crazy enough to think that plenty of horrible days will not take place. Still, I love that after years of wandering in the desert, I have stumbled into an oasis that not only reminds me of what I have always loved about this insane profession, but also inspires me to give what I can to make the world a better place. Coehlo in The Alchemist tells us that the universe conspires to aid someone in pursuit of his Personal Legend. The way things are going of late, I am fairly sure that he knows exactly what he is saying!
Tuesday, September 16, 2008
Hope Happening Here
Today, perhaps for the first time ever, my therapist could NOT stop smiling during our session. It was truly incredible. Of course, it might be that nearly everything I said at today's session had a positive tone (or at least undertone). When I was thinking about today's session, while at school yesterday, I felt nearly giddy. I look forward to therapy because talking out my issues grounds me. The difference last night was that I knew that I was bursting to let my therapist know how well things have been going. The sensation is incredibly odd.
As I left my therapy session, though, I realized what I was experiencing. For the first time in years, I am actually feeling hopeful. Even more importantly, it is not a "pie-in-the-sky" hope - believing that with just a few changes I will start doing yoga for an hour each day, or that I will tweak a couple of meds and be able to work full time again. Those thoughts aren't even dreams, they are delusions. What is percolating inside me is - the belief that I will make a difference, the possibility that I can accomplish worthwhile tasks (even with a chronic condition), the reality that I am far more than a bizarre medical condition. I don't know if anything feels quite this good.
As I mentioned above, I don't see this moment as an end. If anything, it is the true beginning. Now, I can start to walk honestly with my disease and discover ways to honor it while still confronting it. Narcolepsy is a part of me, but it is certainly NOT all of me. In fact it isn't a big percentage. It make keep my energy down, but my heart and soul and mind are MINE. And, this disease can have no part of them. I know that many dark days will be on my path, but I fear them less and less. I merely need to put one foot in front of the other, and I will continue to walk my path as best I can.
Perhaps one of the things that has given me the most hope in the last few months is communicating with other people with narcolepsy online. I had made such incredible friends throughout the world. It is a huge blessing for me. When I read about a woman in the United Arab Emirates struggling to find out about narcolepsy, or the young woman in Singapore who has taken control of her own life and medical condition, my spirits soar. Some people praise me for my kindness to them. I am honored and flattered by their praise, but even more so I am inspired by their courage and determination to face this disease and the societal scorn that can accompany it. Their journeys give my own even more purpose. At some level, having narcolepsy is worth all of its hassles purely so I can be lucky enough to know other people with naroclepsy.
As I left my therapy session, though, I realized what I was experiencing. For the first time in years, I am actually feeling hopeful. Even more importantly, it is not a "pie-in-the-sky" hope - believing that with just a few changes I will start doing yoga for an hour each day, or that I will tweak a couple of meds and be able to work full time again. Those thoughts aren't even dreams, they are delusions. What is percolating inside me is - the belief that I will make a difference, the possibility that I can accomplish worthwhile tasks (even with a chronic condition), the reality that I am far more than a bizarre medical condition. I don't know if anything feels quite this good.
As I mentioned above, I don't see this moment as an end. If anything, it is the true beginning. Now, I can start to walk honestly with my disease and discover ways to honor it while still confronting it. Narcolepsy is a part of me, but it is certainly NOT all of me. In fact it isn't a big percentage. It make keep my energy down, but my heart and soul and mind are MINE. And, this disease can have no part of them. I know that many dark days will be on my path, but I fear them less and less. I merely need to put one foot in front of the other, and I will continue to walk my path as best I can.
Perhaps one of the things that has given me the most hope in the last few months is communicating with other people with narcolepsy online. I had made such incredible friends throughout the world. It is a huge blessing for me. When I read about a woman in the United Arab Emirates struggling to find out about narcolepsy, or the young woman in Singapore who has taken control of her own life and medical condition, my spirits soar. Some people praise me for my kindness to them. I am honored and flattered by their praise, but even more so I am inspired by their courage and determination to face this disease and the societal scorn that can accompany it. Their journeys give my own even more purpose. At some level, having narcolepsy is worth all of its hassles purely so I can be lucky enough to know other people with naroclepsy.
Place of Peace
I am struck lately by the calm that I am often able to find. Even on the most frenetic days at school, I am now able to close my eyes, breathe deeply and relax. It doesn't always work, but since it used to NEVER work, I definitely think this is progress. I know that with regular yoga in my life, I will not only get better at relaxing, but I will also become quite adept at purposefully loosening specific muscles. Wow, do I need that!
The other thing that I love is that I am able to carry some of that stillness in my heart and soul these days. Certainly, I am a basket case much of the day (as I have always been), but even in that frenzy, part of me knows that things will work out in the end. Just today, my carefully crafted lesson on Gilgamesh did not go the way that I wanted it to go. In our first class, the students asked tons of questions which forced me to continue the lecture into the second period. I love that they were interested, but as a result of that, they wound up with more homework than I had hoped. It got even crazier in the second class. I was more efficient in my lecturing, and the class essentially had the entire second class period to work. But, the computers decided that they had done enough for one day. So, hardly anyone could get to the appropriate website. In both situations, while I was frustrated, I simply rolled with the realities. I tried to help my first group as much as I could, floating from group to group and checking their progress. With the second class, I actually had them put their computers away. Instead, I read them the sections of the story. We even answered the questions together. They too wound up with more homework than I had planned, but I think that is okay.
Just months ago, I honestly believe a day like today would have done me in. Instead, I managed to run some errands, get my daughter to volleyball and even write a few blogs! Hooray! Something is happening for me, and that is good. I am well aware that my narcolepsy is not going away. In fact, all of this has happened even though I am fairly exhausted these days. That said, though, I know that I am starting to understand the real base line for myself. I am also feeling motivated to make a difference with what I do. The driving force for that impulse is me, which is even more important. So often in the past, I have tried to be a better teacher, or dad, or husband, or person for other people. I know this time, I am doing it for me.
The other thing that I love is that I am able to carry some of that stillness in my heart and soul these days. Certainly, I am a basket case much of the day (as I have always been), but even in that frenzy, part of me knows that things will work out in the end. Just today, my carefully crafted lesson on Gilgamesh did not go the way that I wanted it to go. In our first class, the students asked tons of questions which forced me to continue the lecture into the second period. I love that they were interested, but as a result of that, they wound up with more homework than I had hoped. It got even crazier in the second class. I was more efficient in my lecturing, and the class essentially had the entire second class period to work. But, the computers decided that they had done enough for one day. So, hardly anyone could get to the appropriate website. In both situations, while I was frustrated, I simply rolled with the realities. I tried to help my first group as much as I could, floating from group to group and checking their progress. With the second class, I actually had them put their computers away. Instead, I read them the sections of the story. We even answered the questions together. They too wound up with more homework than I had planned, but I think that is okay.
Just months ago, I honestly believe a day like today would have done me in. Instead, I managed to run some errands, get my daughter to volleyball and even write a few blogs! Hooray! Something is happening for me, and that is good. I am well aware that my narcolepsy is not going away. In fact, all of this has happened even though I am fairly exhausted these days. That said, though, I know that I am starting to understand the real base line for myself. I am also feeling motivated to make a difference with what I do. The driving force for that impulse is me, which is even more important. So often in the past, I have tried to be a better teacher, or dad, or husband, or person for other people. I know this time, I am doing it for me.
Sailing through September
How in the world is it September 16th? Seriously! This month has BLOWN past me. I had hoped to write at least one blog entry last week. Then, as the weekend approached, I was sure that I would get caught up then. Suddenly, it is Tuesday night, and I have not written anything for nearly a week and a half. No wonder my head feels like it might explode. Unwritten blog pieces are screaming to get out. The scariest part is that I couldn't have written last week even if someone would have offered to pay me for it. I can't believe how busy I have been.
Somehow, little old narcoleptic me has managed to put in full days for over a week now. Starting on Monday, September 8th, I worked (or managed) 12 hour days (or more) for this entire period. Two of the days have been school work and then getting my daughter home and to volleyball practice. Two other days were school and going to my daughter's school for the distribution of computers for the new one-to-one program (yes, I am ridiculously excited about it). Another day involved a full day of teaching and helping at a football game. Even Saturday and Sunday were crazy with neighborhood clean up activities, curriculum planning, house and garage cleaning, church and my men's group. But, the two nuttiest days were last Tuesday, September 9th, and yesterday.
September 9th was already shaping up to be a crazy day. I had a full day of teaching, an acupuncture appointment, a chiropractic appointment and the first of three computer distribution days. The heightened stress came in when I realized that my car had died in the parking lot of Langford Chiropractic. My wife eventually arrived, and we jumped my car. I also knew that I would not be at the computer distribution. I figured my night would then get easier, but I was wrong. On the trip home, my radio and speedometer would die every time I turned on my headlights. Even more unnerving was the radio fading out periodically and then fading back in. Thus, I didn't even turn off the car when we got home. We simply headed straight to our mechanic. After dropping off the car, I desperately wanted to go get some food, but my wife needed to get home to our daughter. Thus, I felt rejected and let the wheels start to come off my wagon for the night. Somehow, I managed to avoid a huge fight with my wife - which was a good decision. We even had a chance to process the situation the next morning. She actually thought everything was "fine" from the night before. The best part, though, is that I did get to tell her what was upsetting me, but in a way and at a time that put neither of us in a bad place. As crazy as that day felt, though, it had nothing on yesterday.
My wife and I have decided that I am driving our daughter to school on Monday's. My wife teaches an early class, and I like helping in the morning once a week to offset the times when my wife needs to pick up our daughter. Because of this early trip on Mondays, I get to school before it starts. Ordinarily, that is great because I can get some work done (since I am always behind). Unfortunately, I was horribly behind yesterday (and still am). Yet, when I got to school, I knew I had almost nothing to give in terms of correcting. I did manage to get some other work done, though. I was active all day. My wife picked up our daughter to get her to a volleyball match, and I stayed at school to get my lesson planning finished for today. I worked constantly for three hours. When I finished, it ws time for "Back-to-School" night. That meant that I got to put on the teacher show for the parents of my students. Granted, we had an excellent time, but when I arrived home at 9:15 PM, I had been working for 14 hours. That is not the wisest thing that a narcoleptic can do.
The strange thing, though, is that I am surviving. I know that I can't keep this pace up, but I don't think that I will need to do that. The past two weeks have had a number of one time only activities. I still believe that I can get into a decent routine. More importantly, I know that I HAVE to get into a routine if I want to be a decent teacher, a great dad and an awesome husband. Having said that, though, I am proud of myself for working hard and for protecting time for me - even on the busiest days of the past week and a half. I am still horribly sleepy, but I am weathering it well.
Somehow, little old narcoleptic me has managed to put in full days for over a week now. Starting on Monday, September 8th, I worked (or managed) 12 hour days (or more) for this entire period. Two of the days have been school work and then getting my daughter home and to volleyball practice. Two other days were school and going to my daughter's school for the distribution of computers for the new one-to-one program (yes, I am ridiculously excited about it). Another day involved a full day of teaching and helping at a football game. Even Saturday and Sunday were crazy with neighborhood clean up activities, curriculum planning, house and garage cleaning, church and my men's group. But, the two nuttiest days were last Tuesday, September 9th, and yesterday.
September 9th was already shaping up to be a crazy day. I had a full day of teaching, an acupuncture appointment, a chiropractic appointment and the first of three computer distribution days. The heightened stress came in when I realized that my car had died in the parking lot of Langford Chiropractic. My wife eventually arrived, and we jumped my car. I also knew that I would not be at the computer distribution. I figured my night would then get easier, but I was wrong. On the trip home, my radio and speedometer would die every time I turned on my headlights. Even more unnerving was the radio fading out periodically and then fading back in. Thus, I didn't even turn off the car when we got home. We simply headed straight to our mechanic. After dropping off the car, I desperately wanted to go get some food, but my wife needed to get home to our daughter. Thus, I felt rejected and let the wheels start to come off my wagon for the night. Somehow, I managed to avoid a huge fight with my wife - which was a good decision. We even had a chance to process the situation the next morning. She actually thought everything was "fine" from the night before. The best part, though, is that I did get to tell her what was upsetting me, but in a way and at a time that put neither of us in a bad place. As crazy as that day felt, though, it had nothing on yesterday.
My wife and I have decided that I am driving our daughter to school on Monday's. My wife teaches an early class, and I like helping in the morning once a week to offset the times when my wife needs to pick up our daughter. Because of this early trip on Mondays, I get to school before it starts. Ordinarily, that is great because I can get some work done (since I am always behind). Unfortunately, I was horribly behind yesterday (and still am). Yet, when I got to school, I knew I had almost nothing to give in terms of correcting. I did manage to get some other work done, though. I was active all day. My wife picked up our daughter to get her to a volleyball match, and I stayed at school to get my lesson planning finished for today. I worked constantly for three hours. When I finished, it ws time for "Back-to-School" night. That meant that I got to put on the teacher show for the parents of my students. Granted, we had an excellent time, but when I arrived home at 9:15 PM, I had been working for 14 hours. That is not the wisest thing that a narcoleptic can do.
The strange thing, though, is that I am surviving. I know that I can't keep this pace up, but I don't think that I will need to do that. The past two weeks have had a number of one time only activities. I still believe that I can get into a decent routine. More importantly, I know that I HAVE to get into a routine if I want to be a decent teacher, a great dad and an awesome husband. Having said that, though, I am proud of myself for working hard and for protecting time for me - even on the busiest days of the past week and a half. I am still horribly sleepy, but I am weathering it well.
Sunday, September 7, 2008
Depressing Dangers
I find it fascinating how a weekend can spin on a dime. Yesterday was fantastic, while today is not. My day has been alright. I actually held to some scheduled times that I set for myself (which is progress), but my mid-afternoon and evening fell apart. In some ways I got swept up in "drama," as my students would call it. Of course, the reality of the situations is far more than that. One of the ugliest aspects of narcolepsy is the depression that it can cause.
In recent days a friend (one of many I have met in online narcolepsy support groups) has written a few things that have me deeply concerned. She is definitely depressed. The disease alone can do that. Imagine the reality of it. Narcolepsy doesn't allow you to sleep well (often even if you are one a medication to help you sleep). As a result you spend your entire day exhaust (often even if you take some type of stimulant). Beyond feeling exhausted, you might have cataplexy and lose control of certain muscles at times (making you feel clumsy and awkward), but even if you don't have cataplexy, the fatigue drags at you. You can't do everything that think think you should. Others wonder why you aren't getting your work done. Many narcoleptics are called lazy by their colleagues and family. They are told to get more sleep or to drink some coffee. In many ways the disease is a nightmare. Narcoleptics look and (generally) act like able-bodied persons, but they actually have a debilitating disease. One that forces them to perform far below what they (and others) think should be the case. How could that cause depression?!?
My friend, though, has even more going on in her life. She recently moved in an attempt to get her life back on track. The move has left her in a new place with few friends. Worst of all, she is among the millions of U.S. citizens without health insurance. She is running out of narcolepsy meds and can't see a doctor. Needless to say, I am worried.
One of her posts, though, caused another narcoleptic a great deal of stress. This second woman saw my friend's post, and it cut this woman to the core. My friend's post in my eyes is a cry for help, but due to events and stress in this other narcoleptic's life, she saw it as counterproductive and giving up. Much angst ensued, including two other friends getting involved and responding with posts. In the end I wound up trading a number of messages directly to the narcoleptic woman who got so upset at my friend's message. It still bothers her, but I think she simply appreciated being able to tell someone her story.
In all of the consternation, I kept reminding myself how fragile all of this is. Narcolepsy truly is an insane condition. I take drugs to help me sleep at night and others to help me stay awake during the day. That is wrong! It is a complete paradox. Even more amazing is the fact that so many narcoleptics fight like mad to continue to function. A good friend offered the thought to me that we narcoleptics have to have this condition. If we didn't, we would wind up taking over the world. It sounds funny - until you meet other narcoleptics and realize how hard we all drive ourselves (and yet still feel inferior).
While all of this has been happening around my friend's post, I also had the chance to read up on the life of this amazing sixteen year old, narcoleptic girl in Singapore. This young woman realized that something was wrong with her health, disregarded every message that she got that it was in her head, researched like mad on the Internet, read about narcolepsy, dialogued with a number of us online, made her own appointments with a sleep doctor, and eventually got diagnosed. She also managed to do this within a month or so. Yet, in the face of this, her parents still think that she is lazy. She is in trouble at school because she is not performing well academically (they allow her no excuses), and she thinks she is letting people down. How sad is that? For any sixteen year old to be that resourceful is amazing, but add in the fact that she has narcolepsy, and she should be receiving medals not insults.
I wish there was some way to explain to people that narcolepsy is incredibly hard. Even as I learn to live with it, I daily fight my own messages that I "should" be doing more. The fact of the matter is that without medication my brain function would be comparable to a non-narcoletic who had not slept for 72 hours. With medication it is better than that, but I am still wiped out most of the time. AND, my narcolepsy is not nearly as severe as others. It saddens me so that many of the narcoleptics that I know face scorn from the people closest to them - parents, siblings, friends. How is that just? I hope that all of the people who are on my mind tonight - my depressed friend, the upset woman who is my new friend, the two others who engaged in the dialogue, the young woman in Singapore - are all able to find some peace and strength in their lives. I am blessed to have the family and friends that I do. I am also fortunate to have a local support group that is growing stronger. Plus, I get to go to a national convention for narcoleptics in less than a month, or at least I think I do. Amid the other stressors today, I learned that my account on the Narcoleptic Network Online Community is not working. When I couldn't log in, I tried to use the help functions, only to be told that "no member has that information." So, I either did something very wrong, or it is some computer glitch. I sent off a couple of requests for help, but have heard nothing yet. Invariably, I am already blaming myself, and a part of my brain is convinced that I have gotten myself thrown out of the group before I ever got to go to the convention. While the thinking is completely irrational, it starts to sound pretty accurate as the depression creeps in. Let's hope that I am totally wrong and am able to access my account again soon.
In recent days a friend (one of many I have met in online narcolepsy support groups) has written a few things that have me deeply concerned. She is definitely depressed. The disease alone can do that. Imagine the reality of it. Narcolepsy doesn't allow you to sleep well (often even if you are one a medication to help you sleep). As a result you spend your entire day exhaust (often even if you take some type of stimulant). Beyond feeling exhausted, you might have cataplexy and lose control of certain muscles at times (making you feel clumsy and awkward), but even if you don't have cataplexy, the fatigue drags at you. You can't do everything that think think you should. Others wonder why you aren't getting your work done. Many narcoleptics are called lazy by their colleagues and family. They are told to get more sleep or to drink some coffee. In many ways the disease is a nightmare. Narcoleptics look and (generally) act like able-bodied persons, but they actually have a debilitating disease. One that forces them to perform far below what they (and others) think should be the case. How could that cause depression?!?
My friend, though, has even more going on in her life. She recently moved in an attempt to get her life back on track. The move has left her in a new place with few friends. Worst of all, she is among the millions of U.S. citizens without health insurance. She is running out of narcolepsy meds and can't see a doctor. Needless to say, I am worried.
One of her posts, though, caused another narcoleptic a great deal of stress. This second woman saw my friend's post, and it cut this woman to the core. My friend's post in my eyes is a cry for help, but due to events and stress in this other narcoleptic's life, she saw it as counterproductive and giving up. Much angst ensued, including two other friends getting involved and responding with posts. In the end I wound up trading a number of messages directly to the narcoleptic woman who got so upset at my friend's message. It still bothers her, but I think she simply appreciated being able to tell someone her story.
In all of the consternation, I kept reminding myself how fragile all of this is. Narcolepsy truly is an insane condition. I take drugs to help me sleep at night and others to help me stay awake during the day. That is wrong! It is a complete paradox. Even more amazing is the fact that so many narcoleptics fight like mad to continue to function. A good friend offered the thought to me that we narcoleptics have to have this condition. If we didn't, we would wind up taking over the world. It sounds funny - until you meet other narcoleptics and realize how hard we all drive ourselves (and yet still feel inferior).
While all of this has been happening around my friend's post, I also had the chance to read up on the life of this amazing sixteen year old, narcoleptic girl in Singapore. This young woman realized that something was wrong with her health, disregarded every message that she got that it was in her head, researched like mad on the Internet, read about narcolepsy, dialogued with a number of us online, made her own appointments with a sleep doctor, and eventually got diagnosed. She also managed to do this within a month or so. Yet, in the face of this, her parents still think that she is lazy. She is in trouble at school because she is not performing well academically (they allow her no excuses), and she thinks she is letting people down. How sad is that? For any sixteen year old to be that resourceful is amazing, but add in the fact that she has narcolepsy, and she should be receiving medals not insults.
I wish there was some way to explain to people that narcolepsy is incredibly hard. Even as I learn to live with it, I daily fight my own messages that I "should" be doing more. The fact of the matter is that without medication my brain function would be comparable to a non-narcoletic who had not slept for 72 hours. With medication it is better than that, but I am still wiped out most of the time. AND, my narcolepsy is not nearly as severe as others. It saddens me so that many of the narcoleptics that I know face scorn from the people closest to them - parents, siblings, friends. How is that just? I hope that all of the people who are on my mind tonight - my depressed friend, the upset woman who is my new friend, the two others who engaged in the dialogue, the young woman in Singapore - are all able to find some peace and strength in their lives. I am blessed to have the family and friends that I do. I am also fortunate to have a local support group that is growing stronger. Plus, I get to go to a national convention for narcoleptics in less than a month, or at least I think I do. Amid the other stressors today, I learned that my account on the Narcoleptic Network Online Community is not working. When I couldn't log in, I tried to use the help functions, only to be told that "no member has that information." So, I either did something very wrong, or it is some computer glitch. I sent off a couple of requests for help, but have heard nothing yet. Invariably, I am already blaming myself, and a part of my brain is convinced that I have gotten myself thrown out of the group before I ever got to go to the convention. While the thinking is completely irrational, it starts to sound pretty accurate as the depression creeps in. Let's hope that I am totally wrong and am able to access my account again soon.
Saturday, September 6, 2008
Mighty MOONS
I just got back from my second MOONS meeting (I figure I can't count the Planning Meeting/suburban shopping nightmare). Even though I knew it would be better than I was expecting, the experience blew me away again. The group interacted even more and is clearly beginning to connect on deeper levels. In fact, the meeting devolved at the end into a series of small conversations which was beautiful to see. Lots of people were having "A-ha" moments throughout the room. The weirdest part is that we never got to the featured speaker. A member of MOONS was going to tell her story, focusing specifically on her pregnancy. But, I think even she would say that things went great. Actually, she is excited to have two more months to use for further development of her material.
Dr. Rogers opened the meeting with a plug for the Narcolepsy Network National Conference being held in Milwaukee, WI from October 3 to October 5. Since I am already registered to go, I brought my flier for it and was able to give it to a wonderful woman sitting next to me. She is now in her 80s, but didn't learn about her narcolepsy until she was 60. She spent most of her life battling this disease and didn't even know it. That is incredible. I was also thrilled to see that a number of the other MOONS folks are considering the conference or are already planning to go.
Dr. Rogers then made an earnest pitch for assistance. She and Charlie, the narcoleptic who has been helping her, know that they can't do this alone. In fact, both of them felt under prepared for this meeting simply because life in general can move too fast. I did find out that the "planning meeting" in July did happen. Dr. Rogers and one other person made it. Turns out I was in the right place, but either got there after they left or before they arrived. The good part is that lots of people are excited to help now. We do have a planning meeting scheduled for three weeks from now. I plan to go and brave shopping madness again. This time, I will work to arrive early and stay until someone shows up. We also set a new date for the next large group meeting. We didn't know it at the time, but we will listen in November to a group member speak about her life with narcolepsy and her pregnancy (that of course is the tabled speaker from today's meeting).
What got us "off track" was some incredible information from Dr. Rogers about tracking your own medical records. It is a good idea to have your own set no matter what your health is like, but it is imperative for people with chronic conditions. By doing so, you can catch errors and be able to clarify your condition for new doctors. Many of us had input as we moved through the material. I have kept my own records for the past four years, but I learned tons of new things to include. I also got to plug (a couple of times) acupuncture and my favorite chiropractic clinic in the whole world - Langford Chiropractic! Apparently, Dr. Rogers has been taking an acupuncture course and realized that Chinese medicine has treatments for narcolepsy, but discuss it as chronic fatigue syndrome. I shared my experiences as did others.
Once again, though, the best part of the meeting was chatting with others at the end of it. Two of my former students were there, and it was great to connect with Charlie again. I wrote a note to Dr. Rogers offering my assistance. Slowly, some people trickled out, but a group of us stayed until nearly 1 PM. Then, we decided to go get food together. We ate across the street and continued sharing stories and insights until nearly 3 PM. As I said earlier, I knew the day would exceed my expectations, but even in my wildest dreams, I never saw myself at lunch with five other narcoleptics (and one spouse and one baby). I only have to wait three weeks for the planning meeting. AND, it is only four weeks until the conference in Milwaukee. If lunch with five other narcoleptics is this cool, my brain reels with the possibilities of having a meal with two hundred narcoleptics.
I also feel great today because I know that I can help. I have no plans to try to do everything, but I certainly will be an asset and benefot myself and others. Just talking to the older woman and her husband today, I gave them some new ideas. I also provided some insights to another woman whose husband has narcolepsy. With school starting well and feeling managable, my wife getting her new job, and me working to stay balance, I am filled with joy at the potential for a good year ahead. I certainly know that my narcolepsy and fatigue will not go away, but I am more hopeful than ever that I can take each day as it comes and appreciate the upside, rather than dwelling on the mishaps.
Dr. Rogers opened the meeting with a plug for the Narcolepsy Network National Conference being held in Milwaukee, WI from October 3 to October 5. Since I am already registered to go, I brought my flier for it and was able to give it to a wonderful woman sitting next to me. She is now in her 80s, but didn't learn about her narcolepsy until she was 60. She spent most of her life battling this disease and didn't even know it. That is incredible. I was also thrilled to see that a number of the other MOONS folks are considering the conference or are already planning to go.
Dr. Rogers then made an earnest pitch for assistance. She and Charlie, the narcoleptic who has been helping her, know that they can't do this alone. In fact, both of them felt under prepared for this meeting simply because life in general can move too fast. I did find out that the "planning meeting" in July did happen. Dr. Rogers and one other person made it. Turns out I was in the right place, but either got there after they left or before they arrived. The good part is that lots of people are excited to help now. We do have a planning meeting scheduled for three weeks from now. I plan to go and brave shopping madness again. This time, I will work to arrive early and stay until someone shows up. We also set a new date for the next large group meeting. We didn't know it at the time, but we will listen in November to a group member speak about her life with narcolepsy and her pregnancy (that of course is the tabled speaker from today's meeting).
What got us "off track" was some incredible information from Dr. Rogers about tracking your own medical records. It is a good idea to have your own set no matter what your health is like, but it is imperative for people with chronic conditions. By doing so, you can catch errors and be able to clarify your condition for new doctors. Many of us had input as we moved through the material. I have kept my own records for the past four years, but I learned tons of new things to include. I also got to plug (a couple of times) acupuncture and my favorite chiropractic clinic in the whole world - Langford Chiropractic! Apparently, Dr. Rogers has been taking an acupuncture course and realized that Chinese medicine has treatments for narcolepsy, but discuss it as chronic fatigue syndrome. I shared my experiences as did others.
Once again, though, the best part of the meeting was chatting with others at the end of it. Two of my former students were there, and it was great to connect with Charlie again. I wrote a note to Dr. Rogers offering my assistance. Slowly, some people trickled out, but a group of us stayed until nearly 1 PM. Then, we decided to go get food together. We ate across the street and continued sharing stories and insights until nearly 3 PM. As I said earlier, I knew the day would exceed my expectations, but even in my wildest dreams, I never saw myself at lunch with five other narcoleptics (and one spouse and one baby). I only have to wait three weeks for the planning meeting. AND, it is only four weeks until the conference in Milwaukee. If lunch with five other narcoleptics is this cool, my brain reels with the possibilities of having a meal with two hundred narcoleptics.
I also feel great today because I know that I can help. I have no plans to try to do everything, but I certainly will be an asset and benefot myself and others. Just talking to the older woman and her husband today, I gave them some new ideas. I also provided some insights to another woman whose husband has narcolepsy. With school starting well and feeling managable, my wife getting her new job, and me working to stay balance, I am filled with joy at the potential for a good year ahead. I certainly know that my narcolepsy and fatigue will not go away, but I am more hopeful than ever that I can take each day as it comes and appreciate the upside, rather than dwelling on the mishaps.
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