I wonder if my amazement for the ins and outs of narcolepsy will always remain this high. Regularly, I lose track of time. I have written about it before - a few times. So, how can I be stunned when it is suddenly 3 PM and I am late for acupuncture. I entered our home office at Noon. I was putting financial information into the computer. I plodded along and even chatted occasionally with my daughter when she entered. Then, while getting something off the printer, I noticed that the computer had the time at 2:56. Honestly, my reaction was disbelief.
I made it to acupuncture and got treated and even got out close to the time I would have if I had been on time - much of that has to do with the wonders of my acupuncturist and the high quality of service at Langford Chiropractic. I even manage to stop berating myself in the car since I clearly am not in control when it comes to the passing of time. But, I am unnerved that the loss of those three hours shocked me. It shouldn't, but it did. Just one more piece of the coping puzzle. I wouldn't be me if I didn't have such unrealistic expectations, and while I might not like that such delusions stick around, I need to embrace them, just as I do my narcolepsy - yippee!
The other element that made the car ride tough was the flood of other items that had also been on the "to do" list today. Again, I handled it better than I have, realizing that the three hours did get much needed things done, but the other issues still ate at me because they are important too. One clear message in all of the chaos, though, is the need for me (with help) to create a rough schedule for my day. It was a goal at the start of the summer and remains one, MITY makes life hard, and today was honestly the first low key day I have had since school let out. Still, I know myself well enough that I will let the entire summer drift away unless I ask for help in making this framework idea a priority.
I need time for the following: yoga, exercise, family, work, housework, my wife, and relaxation. Even as I type it, I get tense because I am already trying to count the minutes and hours in my head. Invariably, my conclusion is that I don't have enough room for all of it. But, I need to find the way to balance those things in the time that I do have. Clearly, I need to prioritize the list too - which things should be daily, which can alternate, which are truly flexible, which must be rigid habits. Off the top of my head, the dailies are my wife, family, yoga, and work. Even within that, only my wife and daughter are non-negotiable. Interestingly enough, they tend to be the two on the list that DO get cut short right now.
As for everything else, I struggle with the ideas of how much, too much and when. That is another reason that I need outside input. Getting others to help me construct the structure is important, but equally vital is having outsiders who will assist me in adhering to the schedule. I also must acknowledge that one of my most compulsive tendencies is an over awareness of time. When I write in this blog, "that the computer had the time at 2:56," it is not necessarily for dramatic or creative effect. My brain grabs on to the exact time and locks it away. It then watches the car clock every inch of the way and frets at every red light. How cool is anxiety, huh? And, my brain does that on 20 mg of fluoxetin. Yeah, it's fun! Again, it is a piece of me and I must integrate it. But, it makes creating a "loose" schedule dangerous for me. Because I can become obsessive about time, I run the risk of having this helpful tool mutate into a destructive one. That is another reason for the outside assistance. Perspective is a great thing.
Getting a schedule into practice is the second goal I am setting tonight. I have another round of MITY starting next Monday, so I will allow myself until July 21 to get all of the pieces in place, but I also need to build it a bit at a time - or I will fail. I also know that I need to spend more time writing about time. Clearly, I have something happening there that needs to be brought into the light. In the end, though, these are all just steps and none of them will be the magic fix. Each thing I do is within the breadth and width of my narcolepsy. I am certainly more than my condition, but I am subject to its whims - even if I do get my schedule groove on.
Monday, June 30, 2008
Lucky in Love
After I posted on Saturday, my evening took an ugly turn. My wife came out to try to get me to come to bed. We were both painfully aware that I had pushed too much over the previous week, and she was hoping that I would actually get to bed before 11 PM for the first time in a week. I was too. The problem arose from her making a lighthearted, but irritating, comment and from me taking it completely the wrong way. She said, "don't you want to be with me?" Now, I adore her, but I had just spent the last three hours with her. I had also gone out to get everyone dinner even though I too was completely exhausted. Sadly, I did not find her comment amusing. Instead, I thought she was upset with me. I overreacted by storming to the bedroom and slamming around the house. As one might imagine, my wife did not appreciate that behavior, especially after a week of neglecting all of my household responsibilities.
I did attempt to discuss the situation with her that night, but she needed more from me than I could give. I was also unwilling to apologize for getting upset at her comment. Thus, I went to bed, and she eventually followed. The added irony is that the next day was our seventeenth wedding anniversary. Upon waking Sunday morning, I got my breakfast together, mad her coffee, and then went back to the bedroom, planning to make sure she knew how much I love her. We proceeded to explore the events of the evening, the disappointments of the previous week, and possible ways that we can avoid such volatility in the future. As strange as this may sound, it provided a perfect beginning to our anniversary. We communicate well most of the time, but even after seventeen years of marriage (preceded by our and a half years of dating and engagement), we constantly push ourselves to find even better ways to connect.
Of course, my narcolepsy factors into all of this. It did before too, but in some ways things are even harder (at least for the time being) now. Previous to my diagnosis, if I was struggling with my workload, I could say and hope that I would find a better way to get the work done. Most of the time, my sense of conviction came from believing that I could push even harder than I was. Now, though, I know that I likely can't push harder. I can for brief periods, like I did last week, but the price is a period of even more extreme exhaustion - and that certainly won't help me get my share of the housework done. The other "problem" of late is my tendency to explain to my wife and my daughter that I didn't do something, or exploded, or wasn't listening because of my narcolepsy. This realization jumped out at me during that Sunday morning discussion. My wife and daughter are painfully aware of my condition. They don't need me reminding them of it, just as I don't need others doing that to me.
Please don't hear this as a wish that I was still undiagnosed. I know that my interactions with my wife are already getting better as I continue to discover how to accept this condition. Even more importantly, the narcolepsy has slowed me to the point that I do need to listen to what she is saying so I can find the right ways to approach her. Before my excessive daytime sleepiness became unbearable, my solution to upsetting my wife was to be super husband - clean everything I can, do all of the chores, dote on her endlessly. That route is no longer an option, and quite honestly I know she was underwhelmed by it - but, she knew I was trying.
More than anything, I need to find a way to do a little bit each day. By setting patterns and maintaining a good (and realistic) base line both my wife and I will be happier and more joyful. We both recognize that I am unable to do half of the housework. She is not asking for that. More than anything, she wants me to be present for her and our daughter - to listen, to hold, to love. Do I still need to get something done? Of course. My wife was already the primary financial support for our family even before I went to a part-time schedule. Now, I bring in about a fourth of our income; she brings in three-fourths. Given that, she has tremendous demands and pressure on her at work. If I don't help manage the house, it looks like a garbage pit within a week.
Which brings me back to Sunday. Our house is still recovering from my MITY focus last week. Things are a bit better today, and I still have some energy left. It is so humbling to realize that entering financial information on a computer and cooking a pork roast can sap most of my energy, but that is my reality. The goal must remain that I do what I can and take pride in that. I am not worried if it will be enough for my wife. Anything I do will thrill her because she does know how hard all of this is for me. I am truly blessed in that regard. So many narcoleptics have families and spouses and partners that question the validity and extent of the fatigue. Instead, my wife showers me with praise for everything that I do. Certainly, she has issues that need work in our relationship, but she is always seeking ways to improve. In fact one of the more interesting moments on Sunday morning came when she asked me what I need. She has asked that before and is always responsive to my requests. But, I tend not to have many. She mentioned that she must be doing a good job of anticipating my needs. I agreed, because she does, but I also raised the fact that I have never honestly explored my needs. Perhaps I will have a few more things that I need from her. It is all part of learning how to be good to myself while still recognizing my role within this marriage and family.
Sunday was a great day. I treasure the time I spend with my wife, particularly when we talk to one another so openly. My best suggestion as to how we avoid letting disappointments fester is that we start having those exchanges once a week. She loved the idea, but the execution of it needs to come from me. She can't feel like it is her responsibility, or the rewards of the dialogue will be lost for her; she will feel like she made me do it. Thus, I have a goal - I need to get time on the calendar for next Sunday. I need to share with my incredible wife. Most days, I wonder how I could be so blessed, but I am working simply to accept my good fortune rather than use it as another way to denigrate myself.
P.S. Dr. J. Steven Poceta commented on my last post and has written about this blog on his own for Revolution Health. I would be remiss if I did not let all of you know that he has tremendous insights. I checked out his blog and am now subscribing to it. He discusses a wide range of sleep issues, but in my opinion insights for sleepy folks with sleep apnea and restless leg syndrome certainly can benefit narcoleptics as much as insights for sleepy folks with narcolepsy. Thus, if you are looking for other material to help in your own struggle with narcolepsy, do check out the Sleep Expert.
I did attempt to discuss the situation with her that night, but she needed more from me than I could give. I was also unwilling to apologize for getting upset at her comment. Thus, I went to bed, and she eventually followed. The added irony is that the next day was our seventeenth wedding anniversary. Upon waking Sunday morning, I got my breakfast together, mad her coffee, and then went back to the bedroom, planning to make sure she knew how much I love her. We proceeded to explore the events of the evening, the disappointments of the previous week, and possible ways that we can avoid such volatility in the future. As strange as this may sound, it provided a perfect beginning to our anniversary. We communicate well most of the time, but even after seventeen years of marriage (preceded by our and a half years of dating and engagement), we constantly push ourselves to find even better ways to connect.
Of course, my narcolepsy factors into all of this. It did before too, but in some ways things are even harder (at least for the time being) now. Previous to my diagnosis, if I was struggling with my workload, I could say and hope that I would find a better way to get the work done. Most of the time, my sense of conviction came from believing that I could push even harder than I was. Now, though, I know that I likely can't push harder. I can for brief periods, like I did last week, but the price is a period of even more extreme exhaustion - and that certainly won't help me get my share of the housework done. The other "problem" of late is my tendency to explain to my wife and my daughter that I didn't do something, or exploded, or wasn't listening because of my narcolepsy. This realization jumped out at me during that Sunday morning discussion. My wife and daughter are painfully aware of my condition. They don't need me reminding them of it, just as I don't need others doing that to me.
Please don't hear this as a wish that I was still undiagnosed. I know that my interactions with my wife are already getting better as I continue to discover how to accept this condition. Even more importantly, the narcolepsy has slowed me to the point that I do need to listen to what she is saying so I can find the right ways to approach her. Before my excessive daytime sleepiness became unbearable, my solution to upsetting my wife was to be super husband - clean everything I can, do all of the chores, dote on her endlessly. That route is no longer an option, and quite honestly I know she was underwhelmed by it - but, she knew I was trying.
More than anything, I need to find a way to do a little bit each day. By setting patterns and maintaining a good (and realistic) base line both my wife and I will be happier and more joyful. We both recognize that I am unable to do half of the housework. She is not asking for that. More than anything, she wants me to be present for her and our daughter - to listen, to hold, to love. Do I still need to get something done? Of course. My wife was already the primary financial support for our family even before I went to a part-time schedule. Now, I bring in about a fourth of our income; she brings in three-fourths. Given that, she has tremendous demands and pressure on her at work. If I don't help manage the house, it looks like a garbage pit within a week.
Which brings me back to Sunday. Our house is still recovering from my MITY focus last week. Things are a bit better today, and I still have some energy left. It is so humbling to realize that entering financial information on a computer and cooking a pork roast can sap most of my energy, but that is my reality. The goal must remain that I do what I can and take pride in that. I am not worried if it will be enough for my wife. Anything I do will thrill her because she does know how hard all of this is for me. I am truly blessed in that regard. So many narcoleptics have families and spouses and partners that question the validity and extent of the fatigue. Instead, my wife showers me with praise for everything that I do. Certainly, she has issues that need work in our relationship, but she is always seeking ways to improve. In fact one of the more interesting moments on Sunday morning came when she asked me what I need. She has asked that before and is always responsive to my requests. But, I tend not to have many. She mentioned that she must be doing a good job of anticipating my needs. I agreed, because she does, but I also raised the fact that I have never honestly explored my needs. Perhaps I will have a few more things that I need from her. It is all part of learning how to be good to myself while still recognizing my role within this marriage and family.
Sunday was a great day. I treasure the time I spend with my wife, particularly when we talk to one another so openly. My best suggestion as to how we avoid letting disappointments fester is that we start having those exchanges once a week. She loved the idea, but the execution of it needs to come from me. She can't feel like it is her responsibility, or the rewards of the dialogue will be lost for her; she will feel like she made me do it. Thus, I have a goal - I need to get time on the calendar for next Sunday. I need to share with my incredible wife. Most days, I wonder how I could be so blessed, but I am working simply to accept my good fortune rather than use it as another way to denigrate myself.
P.S. Dr. J. Steven Poceta commented on my last post and has written about this blog on his own for Revolution Health. I would be remiss if I did not let all of you know that he has tremendous insights. I checked out his blog and am now subscribing to it. He discusses a wide range of sleep issues, but in my opinion insights for sleepy folks with sleep apnea and restless leg syndrome certainly can benefit narcoleptics as much as insights for sleepy folks with narcolepsy. Thus, if you are looking for other material to help in your own struggle with narcolepsy, do check out the Sleep Expert.
Saturday, June 28, 2008
Crashing Hard
I never cease to be amazed by the after effects of pushing past my limits. I know my selective memory helps preserve my sanity - if I remembered exactly how drained I would be after something MITY, I might stop doing things altogether (which would literally drive me insane - me, alone with nothing to do? Disaster in the making). Still, it irritates me to know end that some part of me thinks I will be productive after the strain of the past two weeks.
I would not change ANYTHING that I did during my course. It truly is a labor of love. Rather, I would love to have perspective heading into the aftermath weekend. I went to bed last night honestly believing that I would hit the ground running today. I would relax some, but I would also get books put away clean the house, organize the office... That is INSANE! I dragged myself out of bed, putter for while, took a call from a dear friend and then went to see him. We chatted for a few hours, and then I drove home. By the time I arrived, I was done. I had nothing left for my wife, my daughter, or even myself.
I regret nothing about the day. I did exactly what I wanted, but delusionally I thought (and some part of my still thinks) that I should have done more. How? I have no idea. With what energy? Also an excellent question, to which I have no response. Yet, even with my rational brain in complete agreement with this being a good day, that dissatisfaction sits in my gut and gnaws at me.
Even as I write this, I am realizing that the negative voices are not something to be conquered. I can't control them, just like I can't control my Excessive Daytime Sleepiness, or hypnogogic dreams, or the other effects of my narcolepsy. Rather than denigrating myself for these irrational thoughts, I must embrace them. These messages and expectations are a part of me. I can't undo that. I also know that some of my success in coping with my narcolepsy has been accepting its reality and my lack of control over it. In that vein, admitting that I am powerless over these false beliefs about what I should do may lead me to having more peace. It is clear that no amount of effort/discipline/punishment will stop my outlandish ideals from popping up, but I can decide about acting on them. I think I already do a much better job of that. I didn't come home and push myself to get my list finished. The other element now is recognizing that I also want to avoid reacting to the thoughts. While I have wisely not done the work, I regularly get frustrated with myself for letting those ideas creep back into my head. That reality is impossible to achieve!
I am still exhausted, even with that cool insight. I will go to bed and sleep. I will arise in the morning and do what my body allows. I will certainly believe (in at least part of my brain) that whatever I do tomorrow - it will not be enough. Knowing and admitting that may help me face the disappointment and anxiety. I can only do what is possible. And, given the wonderful and woolly week that I had, possible will likely be minimal.
I would not change ANYTHING that I did during my course. It truly is a labor of love. Rather, I would love to have perspective heading into the aftermath weekend. I went to bed last night honestly believing that I would hit the ground running today. I would relax some, but I would also get books put away clean the house, organize the office... That is INSANE! I dragged myself out of bed, putter for while, took a call from a dear friend and then went to see him. We chatted for a few hours, and then I drove home. By the time I arrived, I was done. I had nothing left for my wife, my daughter, or even myself.
I regret nothing about the day. I did exactly what I wanted, but delusionally I thought (and some part of my still thinks) that I should have done more. How? I have no idea. With what energy? Also an excellent question, to which I have no response. Yet, even with my rational brain in complete agreement with this being a good day, that dissatisfaction sits in my gut and gnaws at me.
Even as I write this, I am realizing that the negative voices are not something to be conquered. I can't control them, just like I can't control my Excessive Daytime Sleepiness, or hypnogogic dreams, or the other effects of my narcolepsy. Rather than denigrating myself for these irrational thoughts, I must embrace them. These messages and expectations are a part of me. I can't undo that. I also know that some of my success in coping with my narcolepsy has been accepting its reality and my lack of control over it. In that vein, admitting that I am powerless over these false beliefs about what I should do may lead me to having more peace. It is clear that no amount of effort/discipline/punishment will stop my outlandish ideals from popping up, but I can decide about acting on them. I think I already do a much better job of that. I didn't come home and push myself to get my list finished. The other element now is recognizing that I also want to avoid reacting to the thoughts. While I have wisely not done the work, I regularly get frustrated with myself for letting those ideas creep back into my head. That reality is impossible to achieve!
I am still exhausted, even with that cool insight. I will go to bed and sleep. I will arise in the morning and do what my body allows. I will certainly believe (in at least part of my brain) that whatever I do tomorrow - it will not be enough. Knowing and admitting that may help me face the disappointment and anxiety. I can only do what is possible. And, given the wonderful and woolly week that I had, possible will likely be minimal.
Friday, June 27, 2008
Joy and Sadness
What a week! We regularly discuss the concept of MITY time at my summer program, but it has never been more visceral than what I felt this past week. Every day at the program seems to move faster than the next. This week was a blur - a fantastically wonderful blur. Our students produced incredible writing, presented their work marvelously at the class reading and grew together as a class. Best of all, the appreciated the gifts and the shortcomings of each other. They celebrated each victory and embraced each flaw. Of course they also had a fair share of chuckles over some errors, but even then they laughed with one another, not at anyone.
Even more impressive for me, is that my co-teacher and I never did get "on track." Yet, all of our students had an amazing time. Certainly, we instructors are still good in the classroom with our "B" game, probably even with our "C." The students, however, are the real reason that this year achieved new heights. Their work and editing with one another stunned me this year. The depth and insight of their critical comments unnerved me. The young women and men understand how to peer edit in ways that I never imagined teenagers could. Some of my favorite moments came in the last three days of class. A young woman, who has been in our class for five years, essentially started functioning as a third instructor. The two of us were tied up assembling the final book and the class reading program, so she quietly stepped in to aid us. I know that some of our youngest writers exceeded my wildest expectations because of what she helped them to realize.
Thinking on that, though, also reminds me that the final day of the class is also incredibly sad. The bond that forms at MITY in general, and in the creative writing class in particular, is breathtaking. So may of our students feel alone and isolated in their own schools and in their daily lives. Being at MITY allows them to feel "normal" because every other student is just as talented. There is still tremendous diversity, but instead of competing with each other, they inspire each other. As a result the students form lifelong friendships even though they only see each other for a two week period each year. Even I know that I do my best teaching in this two week period. Thus, reaching the final day can be devastating. I was particularly worried this year. This class began bonding before we even entered the room on the first day. Some of that is the fact that 17 of our 27 students were returning to the class. The bigger piece, though, is the culture that MITY fosters.
Another reason that the "final" day has become more difficult of late is that we now are regularly having students who have been in the class for five years in a row. Last year, we had our first two students reach the five year mark. Both had already graduated from high school. We also had a third graduated senior who was in the course for the first time. This year, we had four graduated seniors - all of them have taken the class multiple times (with two again hitting the five year market). Beyond those two we had one other person hit the five year mark, and unless something radical happens, she will be our first six year student. Six is the maximum number of years that any student can attend MITY. Basically, she will have been in the class for two thirds of our nine years come next June. And, out of those 17 returners, we had many four and three year veterans. It is insane. It is also painful to reach those final moments and to know that we all can't be together any more. Now, change is good (in fact, I think it is vital), but it is also extremely hard.
The two five year, graduated seniors who had their last class today are incredibly important to me. The young woman is the one who I mentioned above helping her peers. She has always been a person who has given to others. Even in her first two years, she was the student who "organized" our piles of books. She writes glorious pieces and showers love on all of those around her. I know that she will miss MITY, but I also know that we will miss her smile and her presence even more. Thankfully, she is already a dear friend, and I know that we will stay in contact for years. The young man is someone to whom I am even closer. He arrived five years ago as a timid boy who definitely did not "fit in" at his rural school. He credits MITY with saving his life; I believe him. I have seen his town, and it has nothing to offer him. He lived for MITY every summer. Thankfully, he has grown into one of the finest people I know. He will be much closer (geographically) to me while he is in college over the next four years. I am thrilled. He calls me his "second dad," and I can think of no greater honor. I would be blessed to have had a son as wonderful as he is. He also happens to be one of the best writers that I have ever encountered.
Even though I know that I will see both of them again, it will never be in this particular "MITY" capacity. In many ways it will be better, but it certainly will not be the same. I know that much of my frustration of the past two weeks was the fact that my narcolepsy was preventing me from being the teacher that I wanted to be for them. Now, they both read this blog. They are well aware of my condition and would tell me it is insane that I would worry about that. Still, I care about them so much and hate that I couldn't be more for them this year. The situation does underscore the same problem I continue to have at home. I can accept the limits of narcolepsy when the people affected are strangers or acquaintances, but the idea of disappointed those that I love destroys me. Of course the reality is that I will impact the people closest to me more than anyone else because I am around them more. I can't put others ahead of me, even if they are people I love, or better yet, especially because they are people I love. When I think I have disappointed those closest to me, I am so harsh on myself that I wind up hurting them even more from my woundedness. Thus, I continue to accept everything that narcolepsy brings my way.
Even more impressive for me, is that my co-teacher and I never did get "on track." Yet, all of our students had an amazing time. Certainly, we instructors are still good in the classroom with our "B" game, probably even with our "C." The students, however, are the real reason that this year achieved new heights. Their work and editing with one another stunned me this year. The depth and insight of their critical comments unnerved me. The young women and men understand how to peer edit in ways that I never imagined teenagers could. Some of my favorite moments came in the last three days of class. A young woman, who has been in our class for five years, essentially started functioning as a third instructor. The two of us were tied up assembling the final book and the class reading program, so she quietly stepped in to aid us. I know that some of our youngest writers exceeded my wildest expectations because of what she helped them to realize.
Thinking on that, though, also reminds me that the final day of the class is also incredibly sad. The bond that forms at MITY in general, and in the creative writing class in particular, is breathtaking. So may of our students feel alone and isolated in their own schools and in their daily lives. Being at MITY allows them to feel "normal" because every other student is just as talented. There is still tremendous diversity, but instead of competing with each other, they inspire each other. As a result the students form lifelong friendships even though they only see each other for a two week period each year. Even I know that I do my best teaching in this two week period. Thus, reaching the final day can be devastating. I was particularly worried this year. This class began bonding before we even entered the room on the first day. Some of that is the fact that 17 of our 27 students were returning to the class. The bigger piece, though, is the culture that MITY fosters.
Another reason that the "final" day has become more difficult of late is that we now are regularly having students who have been in the class for five years in a row. Last year, we had our first two students reach the five year mark. Both had already graduated from high school. We also had a third graduated senior who was in the course for the first time. This year, we had four graduated seniors - all of them have taken the class multiple times (with two again hitting the five year market). Beyond those two we had one other person hit the five year mark, and unless something radical happens, she will be our first six year student. Six is the maximum number of years that any student can attend MITY. Basically, she will have been in the class for two thirds of our nine years come next June. And, out of those 17 returners, we had many four and three year veterans. It is insane. It is also painful to reach those final moments and to know that we all can't be together any more. Now, change is good (in fact, I think it is vital), but it is also extremely hard.
The two five year, graduated seniors who had their last class today are incredibly important to me. The young woman is the one who I mentioned above helping her peers. She has always been a person who has given to others. Even in her first two years, she was the student who "organized" our piles of books. She writes glorious pieces and showers love on all of those around her. I know that she will miss MITY, but I also know that we will miss her smile and her presence even more. Thankfully, she is already a dear friend, and I know that we will stay in contact for years. The young man is someone to whom I am even closer. He arrived five years ago as a timid boy who definitely did not "fit in" at his rural school. He credits MITY with saving his life; I believe him. I have seen his town, and it has nothing to offer him. He lived for MITY every summer. Thankfully, he has grown into one of the finest people I know. He will be much closer (geographically) to me while he is in college over the next four years. I am thrilled. He calls me his "second dad," and I can think of no greater honor. I would be blessed to have had a son as wonderful as he is. He also happens to be one of the best writers that I have ever encountered.
Even though I know that I will see both of them again, it will never be in this particular "MITY" capacity. In many ways it will be better, but it certainly will not be the same. I know that much of my frustration of the past two weeks was the fact that my narcolepsy was preventing me from being the teacher that I wanted to be for them. Now, they both read this blog. They are well aware of my condition and would tell me it is insane that I would worry about that. Still, I care about them so much and hate that I couldn't be more for them this year. The situation does underscore the same problem I continue to have at home. I can accept the limits of narcolepsy when the people affected are strangers or acquaintances, but the idea of disappointed those that I love destroys me. Of course the reality is that I will impact the people closest to me more than anyone else because I am around them more. I can't put others ahead of me, even if they are people I love, or better yet, especially because they are people I love. When I think I have disappointed those closest to me, I am so harsh on myself that I wind up hurting them even more from my woundedness. Thus, I continue to accept everything that narcolepsy brings my way.
Monday, June 23, 2008
Learning Lessons, Living Life
I am limited. I can't do nearly what I think I can, and that is okay. I need to make HUGE signs with that message on it. Then I need to post them - in my office, in my car (although not on the windshield), in my classroom, in my heart. Accepting the reality of narcolepsy remains one of my largest struggles. Today, I did more correcting than I can ever remember doing in a single day of MITY. More impressively, I did that after waking up completely exhausted. Major victory, right? Apparently it is everywhere but my brain.
By the end of class today, my sixth full day in a row (a new record since the diagnosis), all I could recognize was that I was further behind in terms of comments than when I had started the day. How could that be possible after my most productive day ever? Twenty-seven brilliant teens don't just chill in week two. They write more! Somehow, I thought I could come home and get more work done. I didn't, at least not right away. I did edit a fee more things tonight. But, now it is technically tomorrow (Tuesday). I will sleep soon, hoping to get more done during class. Still, the reality is that I can't do this - not the way I want to do it.
Fortunately, I am well aware that I am giving what I can. I also know that our students are having a wonderful time in class. I need to internalize that more, so I berate myself less. Sadly, such things are easily said, but far from easily done. Coming to terms with all of this will be the journey of my life - it is the reason for this blog. I may not like it, but I can never change it. Thus, I look for the joy and ride out the pain.
I do need to make wiser decisions, though. It finally struck me this morning that trying to team-teach a full time class for two weeks is a massive strain on me, but trying to do another one solo (even for six students) is insane! I will do a good job and survive Session B, but something miraculous will have to take place for me to do it again next year. As much as I love MITY, I need to think about things in broader terms. My year long teaching exhausts me. MITY recharges me in some ways, but it also pushes me even harder - especially our Session A class. I don't want to let down co-teacher, but even more so I can stand the idea of disappointing these amazing young women and men. It was hard to articulate, even to myself today, but this is likely my final year for Session B. While that makes me sad, I know it is right.
This disease is hard. It continues to challenge every aspect of my life. Forcing me to examine my priorities, narcolepsy also helps me to sort through the chaos of reality. Rarely have I had to make definitive choices in my life. That has put me in an elite minority of privileged people for years. That is no longer the case, but it means that my true character has a chance to shine. I can rise to the occasion by doing what my body allows, or I can become bitter and petulant railing against a condition that I can't control. I definitely hope for the former, but know that the latter is also possible. I firmly believe that God gives us no more than we can handle, but I often wonder if I am wise enough to let God help me find the strength for this. Fortunately, I keep getting better at looking for help. Let's hope that trend continues.
By the end of class today, my sixth full day in a row (a new record since the diagnosis), all I could recognize was that I was further behind in terms of comments than when I had started the day. How could that be possible after my most productive day ever? Twenty-seven brilliant teens don't just chill in week two. They write more! Somehow, I thought I could come home and get more work done. I didn't, at least not right away. I did edit a fee more things tonight. But, now it is technically tomorrow (Tuesday). I will sleep soon, hoping to get more done during class. Still, the reality is that I can't do this - not the way I want to do it.
Fortunately, I am well aware that I am giving what I can. I also know that our students are having a wonderful time in class. I need to internalize that more, so I berate myself less. Sadly, such things are easily said, but far from easily done. Coming to terms with all of this will be the journey of my life - it is the reason for this blog. I may not like it, but I can never change it. Thus, I look for the joy and ride out the pain.
I do need to make wiser decisions, though. It finally struck me this morning that trying to team-teach a full time class for two weeks is a massive strain on me, but trying to do another one solo (even for six students) is insane! I will do a good job and survive Session B, but something miraculous will have to take place for me to do it again next year. As much as I love MITY, I need to think about things in broader terms. My year long teaching exhausts me. MITY recharges me in some ways, but it also pushes me even harder - especially our Session A class. I don't want to let down co-teacher, but even more so I can stand the idea of disappointing these amazing young women and men. It was hard to articulate, even to myself today, but this is likely my final year for Session B. While that makes me sad, I know it is right.
This disease is hard. It continues to challenge every aspect of my life. Forcing me to examine my priorities, narcolepsy also helps me to sort through the chaos of reality. Rarely have I had to make definitive choices in my life. That has put me in an elite minority of privileged people for years. That is no longer the case, but it means that my true character has a chance to shine. I can rise to the occasion by doing what my body allows, or I can become bitter and petulant railing against a condition that I can't control. I definitely hope for the former, but know that the latter is also possible. I firmly believe that God gives us no more than we can handle, but I often wonder if I am wise enough to let God help me find the strength for this. Fortunately, I keep getting better at looking for help. Let's hope that trend continues.
Saturday, June 21, 2008
Blessed Beyond Belief
While I remain aggravated about my own dearth of energy, I can't help but smile because I have the best job in the world. I was made to teach, particularly in high school, and get a huge rush from the daily opportunity to watch young minds at work. As wonderful as my regular teaching can be, though, nothing compares to the experience of working in Expand Your Mind at the Minnesota Institute for Talented Youth. Daily, I get the thrill of challenging the brilliant young adults. I am awestruck by their intellect, but even more impressed by their depth of character. My co-teacher and I have 27 amazing writers whose maturity and wisdom belie their teenage years.
My joy comes not just from witnessing their efforts to tremendous pieces, but more so from their passion for each other. Nothing gives me greater hope than spending two weeks each summer with such talented individuals. Their spirits radiate enthusiasm and kindness and mirth and earnestness and compassion and humor and love. Rarely does one find such a group in a life time, and I get to spend time with them every year. The faces change, grow older, move on, but the essence stays the same. Part of that is the atmosphere that my co-teacher and I create, but much more is the result of bringing phenomenal young women and men together. For so many of our students, MITY is the one place where they honestly feel "normal" (whatever that means). Instead of standing out as "the kid with the big brain," each student can shine for his or her talents. Plus, they finally have peers - ones that get their jokes and appreciate their insights.
More than anything, though, my MITY ones help me to become a better person and teacher. Every summer I learn more about myself than I feel that I ever give them in terms of knowledge. Their words - in poetry and prose - weave wondrous images. Their emotions are poured on to each page only to spring to life within the reader's mind. Better yet are the expressive interactions that fill the classroom from the first moment to the last. These incredible individuals bond as a family. They cheer for each other, edit for each other, celebrate for each other. No tangible rewards come as a result of this support; they simply want everyone to feel welcome.
My narcolepsy frustrates me to the core. It prevents me from engaging in EVERYTHING to the extent that I want (or at least that I think I want). But, it also forces me to slow down my world. As a result I can appreciate even more these amazing people in my life. On Thursday we went to the Minneapolis Institute of Art. The class was using the art to practice critical response. They also used the art for inspiration. I certainly enjoyed looking at images, but even better was watching my MITY minds probe great works as they sketched and wrote and pondered. It is beautiful to observe - essentially living art. If my narcolepsy didn't slow me down, I likely would miss seeing those moments. Later, I simply sat down to rest, and slowly I found many of the students gathering near me. They just wanted to be together, relishing the chance to share the quiet and their discoveries.
Narcolepsy is devastating for many of us. I am lucky that I do not experience cataplexy and that my meds keep me from falling asleep during the day. But, I am also lucky because this condition does force me to reduce my pace. I struggle to accept that fact, but it is true. More and more, I know what I need to do is accept my limits. Eventually, I will get there. Until then, I will likely rail against this condition in between moments of peace. I will also embrace my good fortune that has brought me to this glorious summer program.
My joy comes not just from witnessing their efforts to tremendous pieces, but more so from their passion for each other. Nothing gives me greater hope than spending two weeks each summer with such talented individuals. Their spirits radiate enthusiasm and kindness and mirth and earnestness and compassion and humor and love. Rarely does one find such a group in a life time, and I get to spend time with them every year. The faces change, grow older, move on, but the essence stays the same. Part of that is the atmosphere that my co-teacher and I create, but much more is the result of bringing phenomenal young women and men together. For so many of our students, MITY is the one place where they honestly feel "normal" (whatever that means). Instead of standing out as "the kid with the big brain," each student can shine for his or her talents. Plus, they finally have peers - ones that get their jokes and appreciate their insights.
More than anything, though, my MITY ones help me to become a better person and teacher. Every summer I learn more about myself than I feel that I ever give them in terms of knowledge. Their words - in poetry and prose - weave wondrous images. Their emotions are poured on to each page only to spring to life within the reader's mind. Better yet are the expressive interactions that fill the classroom from the first moment to the last. These incredible individuals bond as a family. They cheer for each other, edit for each other, celebrate for each other. No tangible rewards come as a result of this support; they simply want everyone to feel welcome.
My narcolepsy frustrates me to the core. It prevents me from engaging in EVERYTHING to the extent that I want (or at least that I think I want). But, it also forces me to slow down my world. As a result I can appreciate even more these amazing people in my life. On Thursday we went to the Minneapolis Institute of Art. The class was using the art to practice critical response. They also used the art for inspiration. I certainly enjoyed looking at images, but even better was watching my MITY minds probe great works as they sketched and wrote and pondered. It is beautiful to observe - essentially living art. If my narcolepsy didn't slow me down, I likely would miss seeing those moments. Later, I simply sat down to rest, and slowly I found many of the students gathering near me. They just wanted to be together, relishing the chance to share the quiet and their discoveries.
Narcolepsy is devastating for many of us. I am lucky that I do not experience cataplexy and that my meds keep me from falling asleep during the day. But, I am also lucky because this condition does force me to reduce my pace. I struggle to accept that fact, but it is true. More and more, I know what I need to do is accept my limits. Eventually, I will get there. Until then, I will likely rail against this condition in between moments of peace. I will also embrace my good fortune that has brought me to this glorious summer program.
Wednesday, June 18, 2008
Deeply Disappointed
More than anything else in my teaching career, I adore working at my summer job - the Minnesota Institute for Talented Youth. I teach in their Expand Your Mind program. The entire program is amazing. Gifted and talented youth from all over Minnesota (and other states and other countries!) come together for incredible two week courses. Not only are the students brilliant and wise beyond their years, but they also simply have a good time learning. Whether it is a class in chemistry or mathematics, acting or architecture, these young women and men plunge into the material and have a blast learning.
I have been lucky enough to now be teaching my eighth Session A course. Better yet, I get to do it with a dear friend. We literally lucked into the course and have become veterans of the program. Our course is a creative writing workshop that always attracts a huge group of students. In fact we have our largest roster ever this year - 27 students. I always get excited teaching, but when I have a room full of hunger learners, I am in heaven. I honestly enjoy MITY (the acronym is pronounce "mighty" and we abuse it as an adjective) more than anything else that I get to do in my teaching career.
The problem, though, is that my passion for MITY causes me to raise my personal expectations, particularly for me. These students are ultra-intelligent and deserve the utmost effort from their teachers. While I usually worry that I am not giving them enough, I feel like I am truly not delivering what they deserve this year. The day runs from 8:30 AM to 4 PM. That is longer than a full day at my regular job, plus we don't really take a "break" during the day. Since I nearly collapsed after three full days of teaching during the school year, I am not sure how I am still functioning at all after three days of MITY. Granted, I have not done much during the hour and a half that we have for lunch and Rec Time (something I usually throw myself into, which also is causing me guilt this year), but I have essentially worked on class stuff the entire time.
Some of my current angst started well before the class began. I tend to over prepare for everything, and thus NEVER feel ready for anything. This year, though, my co-teacher and I literally worked together for two hours on course materials. We both did work separately, but on the whole we barely scratched the surface of our previous efforts. Now, we both know the material and the course extremely well, but I would guess neither of us is as comfortable with our daily schedule as we have been in the past. The other major issue is that we are in a new classroom after using the same room for the previous seven years. One would think that a room would make almost no difference, but we went from a gigantic room to one that is (at best) one third the size of our old room. We do have a second room for breaking out during editing and writing time, but it is not the same. I also know it is impacting our students. Usually they are spread out all over the place. Now, they are literally on top of each other. Everything just feels off.
In the end, though, my frustration boils down to narcolepsy once again stealing something I love. I am afraid to get wildly insane like I have in the past. I can't afford to get crazy because I will pay for pouring out too much energy. Driving myself at all costs me, but pushing well beyond my limits borders on the dangerous, particularly when I try to do it for two weeks straight. While I know that and realize that, I am daily confronting a room of students who desperately deserve an instructor who is willing to lay it all on the line. Thus, I feel like I am letting them down, and I feel like I am trying harder than I should. Bottom line, I am doomed on both ends, and narcolepsy once again is at the core of my angst. I hate that!!!!!!
The class is going well - I know that. Unfortunately, I want and expect better than "well." I worry that it won't reach the magic level it has in the past seven years. I worry that these students won't feel the connections and joy that I have seen MITY (and this course) bring in every other year. My co-teacher and I are both "off" in terms of our lives. I know my narcolepsy is causing me to struggle in ways I have not experienced before at MITY. I don't know what my co-teacher would say, but my gut says he would likely agree in terms of his own issues. I think that I am the luckiest man in the world getting to teach this course to these students with such a wonderful educator and friend, but all of those positives make me see the negatives with frightening clarity this year.
I keep working to stay in every moment. I can't control much of what happens in my life. I certainly have power over my reaction to those events, but even that is mitigated by my narcolepsy. Unbearable fatigue does make calm patience an easy thing to achieve, especially when working with high energy, hyper-intelligent teens. I have to be accepting of the realities of my life. Narcolepsy prevents me from doing everything that I would like to do. It impacts my teaching - regularly and often. That situation doesn't change simply because MITY is more fun and better than any other teaching gig. While I hate that, I can't change it. I just don't know if I can accept it. And, if I can't, I worry about my personal anxiety when the class ends next Friday because there is no question that I will fall short of what I believe I should be doing for these students.
I have been lucky enough to now be teaching my eighth Session A course. Better yet, I get to do it with a dear friend. We literally lucked into the course and have become veterans of the program. Our course is a creative writing workshop that always attracts a huge group of students. In fact we have our largest roster ever this year - 27 students. I always get excited teaching, but when I have a room full of hunger learners, I am in heaven. I honestly enjoy MITY (the acronym is pronounce "mighty" and we abuse it as an adjective) more than anything else that I get to do in my teaching career.
The problem, though, is that my passion for MITY causes me to raise my personal expectations, particularly for me. These students are ultra-intelligent and deserve the utmost effort from their teachers. While I usually worry that I am not giving them enough, I feel like I am truly not delivering what they deserve this year. The day runs from 8:30 AM to 4 PM. That is longer than a full day at my regular job, plus we don't really take a "break" during the day. Since I nearly collapsed after three full days of teaching during the school year, I am not sure how I am still functioning at all after three days of MITY. Granted, I have not done much during the hour and a half that we have for lunch and Rec Time (something I usually throw myself into, which also is causing me guilt this year), but I have essentially worked on class stuff the entire time.
Some of my current angst started well before the class began. I tend to over prepare for everything, and thus NEVER feel ready for anything. This year, though, my co-teacher and I literally worked together for two hours on course materials. We both did work separately, but on the whole we barely scratched the surface of our previous efforts. Now, we both know the material and the course extremely well, but I would guess neither of us is as comfortable with our daily schedule as we have been in the past. The other major issue is that we are in a new classroom after using the same room for the previous seven years. One would think that a room would make almost no difference, but we went from a gigantic room to one that is (at best) one third the size of our old room. We do have a second room for breaking out during editing and writing time, but it is not the same. I also know it is impacting our students. Usually they are spread out all over the place. Now, they are literally on top of each other. Everything just feels off.
In the end, though, my frustration boils down to narcolepsy once again stealing something I love. I am afraid to get wildly insane like I have in the past. I can't afford to get crazy because I will pay for pouring out too much energy. Driving myself at all costs me, but pushing well beyond my limits borders on the dangerous, particularly when I try to do it for two weeks straight. While I know that and realize that, I am daily confronting a room of students who desperately deserve an instructor who is willing to lay it all on the line. Thus, I feel like I am letting them down, and I feel like I am trying harder than I should. Bottom line, I am doomed on both ends, and narcolepsy once again is at the core of my angst. I hate that!!!!!!
The class is going well - I know that. Unfortunately, I want and expect better than "well." I worry that it won't reach the magic level it has in the past seven years. I worry that these students won't feel the connections and joy that I have seen MITY (and this course) bring in every other year. My co-teacher and I are both "off" in terms of our lives. I know my narcolepsy is causing me to struggle in ways I have not experienced before at MITY. I don't know what my co-teacher would say, but my gut says he would likely agree in terms of his own issues. I think that I am the luckiest man in the world getting to teach this course to these students with such a wonderful educator and friend, but all of those positives make me see the negatives with frightening clarity this year.
I keep working to stay in every moment. I can't control much of what happens in my life. I certainly have power over my reaction to those events, but even that is mitigated by my narcolepsy. Unbearable fatigue does make calm patience an easy thing to achieve, especially when working with high energy, hyper-intelligent teens. I have to be accepting of the realities of my life. Narcolepsy prevents me from doing everything that I would like to do. It impacts my teaching - regularly and often. That situation doesn't change simply because MITY is more fun and better than any other teaching gig. While I hate that, I can't change it. I just don't know if I can accept it. And, if I can't, I worry about my personal anxiety when the class ends next Friday because there is no question that I will fall short of what I believe I should be doing for these students.
Friday, June 13, 2008
Irritating Incompetence
I generally consider myself a patient man. In fact, I often forgive far too easily - which eventually results in a crazy "fist punching wall" moment. Certainly, though, having narcolepsy manages to challenge my kindness in a variety of ways. My least favorite, though, is the angst and irrationality the bubbles to the surface when I am forced to deal with screw ups by my pulmonary doctor's office.
If it seems odd that the primary person and clinic responsible for treating my narcolepsy is also one of my greatest sources of frustration, then you are beginning to glimpse why such moments make me crazy. My provider's practice has a convoluted system for relaying information. When I need to get my doctor a message, I can't call his office. There is no published direct number. Instead, I call a central nurse triage line. Now, I do understand why they adhere to this policy. If I were a pulmonary doctor, I would not want every person in the world calling my office attempting to get a prescription for the various stimulants that narcoleptics take. I would even happily call the triage line if my messages were conveyed correctly even 75% of the time. But, when even simple messages get garbled, impacting my daily health, I get irate.
Interestingly enough, this past week's problem was not caused by the triage line. Of course, in my mind, that makes the screw up even worse. As a result of triage line errors, I have been forced to live without any stimulant for three weeks, had to wait days to figure out how to handle possible reactions to medications and not gotten correct prescriptions. Still, if you have ever played "telephone" (the whispering game), you can see how my phone message, written down by someone, called to someone else, and eventually conveyed to my physician might get messed up. I still struggle to see how that could happen virtually EVERY time, but I can at least glimpse it.
When the error happens in a monthly mailed prescription, however, my tolerance diminishes greatly. Even more unbelievable, though, is the fact that the two prescriptions were correct the month before. There should have been NO reason for the screw up that happened this month. I get prescriptions for my two stimulants every month. This month, the prescription for my MUCH more important drug only gave me enough for 10 days. Now, I would assume that ANY organization that had goofed up a customer's items even once or twice would go out of the way to avoid issues in the future. Given that my problems are well past four instances, and the fact that we are talking about drugs that I need to function even at a minimal level, I can't understand how anyone would let the prescriptions leave that office without triple checking them. Yet, when I got the pills, something was seriously wrong.
While their incompetence is unfathomable, I am even more upset about the near paralysis caused by my own surge of emotions. Due to my previous issues with my own doctor's office, the exhausting effects of narcolepsy, and the bizarre reality that people with conditions like mine usually have to treat navigating healthcare like a full-time job, I found this minor issue shutting me down. I was ready to explode - at someone, on someone, near someone. The rage inside me swarmed and nearly burst. Fortunately, I managed to calm myself. I even left a terse, but controlled message on the nurse triage line. The situation has subsequently resolved itself, but I hate that my mood was devastated. Even more unnerving, it was actions by the people supposedly in charge of helping me the most that set off the cascade.
I don't know if I have many options other than this particular pulmonary practice. Beyond what my health plan will cover, I actually worry that I might not find another doctor as good as mine has been. Even though my interactions with staff at many levels has been less than disappointing, the pulmonary doctor that actually treats me has been decent. When I discussed the situation with my primary doctor (and the smartest physician that I see), he pointed out that I am the ONLY narcoleptic he has encountered in 18 years of practicing. It is possible that my pulmonary doctor has only treated a few dozen narcoleptics (or less), even though it is his "job" medically speaking. I am going to try to see someone who specializes in narcolepsy, even if it is just one visit, to make sure that I am being treated in the best way possible. As for the headaches and red tape getting messages to my doctor or help in handling my situation, I will work to stay balanced. I also know that I am nearing the point of no return. One or two more mistakes will force me to sever my relationship with this pulmonary clinic, no matter how much I like (or at least can tolerate) this doctor. As patients we all must advocate for ourselves. We are still consumers and agitating is often the only way we can force change.
I desperately want to avoid another day like this past Wednesday - when all of this took place. Getting that upset completely derails me, especially when the stress comes from agencies theoretically designed to assist me. I don't want to become bitter and jaded, but more and more I can clearly understand how folks with conditions like mine lose all sense of trust in Western medicine. The way medicine is practiced in the United States does not fit well with chronic illness, particularly when that illness is not clearly understood.
If it seems odd that the primary person and clinic responsible for treating my narcolepsy is also one of my greatest sources of frustration, then you are beginning to glimpse why such moments make me crazy. My provider's practice has a convoluted system for relaying information. When I need to get my doctor a message, I can't call his office. There is no published direct number. Instead, I call a central nurse triage line. Now, I do understand why they adhere to this policy. If I were a pulmonary doctor, I would not want every person in the world calling my office attempting to get a prescription for the various stimulants that narcoleptics take. I would even happily call the triage line if my messages were conveyed correctly even 75% of the time. But, when even simple messages get garbled, impacting my daily health, I get irate.
Interestingly enough, this past week's problem was not caused by the triage line. Of course, in my mind, that makes the screw up even worse. As a result of triage line errors, I have been forced to live without any stimulant for three weeks, had to wait days to figure out how to handle possible reactions to medications and not gotten correct prescriptions. Still, if you have ever played "telephone" (the whispering game), you can see how my phone message, written down by someone, called to someone else, and eventually conveyed to my physician might get messed up. I still struggle to see how that could happen virtually EVERY time, but I can at least glimpse it.
When the error happens in a monthly mailed prescription, however, my tolerance diminishes greatly. Even more unbelievable, though, is the fact that the two prescriptions were correct the month before. There should have been NO reason for the screw up that happened this month. I get prescriptions for my two stimulants every month. This month, the prescription for my MUCH more important drug only gave me enough for 10 days. Now, I would assume that ANY organization that had goofed up a customer's items even once or twice would go out of the way to avoid issues in the future. Given that my problems are well past four instances, and the fact that we are talking about drugs that I need to function even at a minimal level, I can't understand how anyone would let the prescriptions leave that office without triple checking them. Yet, when I got the pills, something was seriously wrong.
While their incompetence is unfathomable, I am even more upset about the near paralysis caused by my own surge of emotions. Due to my previous issues with my own doctor's office, the exhausting effects of narcolepsy, and the bizarre reality that people with conditions like mine usually have to treat navigating healthcare like a full-time job, I found this minor issue shutting me down. I was ready to explode - at someone, on someone, near someone. The rage inside me swarmed and nearly burst. Fortunately, I managed to calm myself. I even left a terse, but controlled message on the nurse triage line. The situation has subsequently resolved itself, but I hate that my mood was devastated. Even more unnerving, it was actions by the people supposedly in charge of helping me the most that set off the cascade.
I don't know if I have many options other than this particular pulmonary practice. Beyond what my health plan will cover, I actually worry that I might not find another doctor as good as mine has been. Even though my interactions with staff at many levels has been less than disappointing, the pulmonary doctor that actually treats me has been decent. When I discussed the situation with my primary doctor (and the smartest physician that I see), he pointed out that I am the ONLY narcoleptic he has encountered in 18 years of practicing. It is possible that my pulmonary doctor has only treated a few dozen narcoleptics (or less), even though it is his "job" medically speaking. I am going to try to see someone who specializes in narcolepsy, even if it is just one visit, to make sure that I am being treated in the best way possible. As for the headaches and red tape getting messages to my doctor or help in handling my situation, I will work to stay balanced. I also know that I am nearing the point of no return. One or two more mistakes will force me to sever my relationship with this pulmonary clinic, no matter how much I like (or at least can tolerate) this doctor. As patients we all must advocate for ourselves. We are still consumers and agitating is often the only way we can force change.
I desperately want to avoid another day like this past Wednesday - when all of this took place. Getting that upset completely derails me, especially when the stress comes from agencies theoretically designed to assist me. I don't want to become bitter and jaded, but more and more I can clearly understand how folks with conditions like mine lose all sense of trust in Western medicine. The way medicine is practiced in the United States does not fit well with chronic illness, particularly when that illness is not clearly understood.
Monday, June 9, 2008
Wish This Wasn't so Hard
Today I read a friend's post on a support group message board. She is likely having an allergic reaction to Xyrem, one of the best drugs available for narcolepsy. This great woman has already faced a number of struggles, and now she is forced to confront this heartbreaking issue. Sadly, she has already tried stopping the Xyrem once before after having a reaction, so it is likely that the Xyrem IS the cause. Unfortunately, many narcoleptics share similar stories. Rarely do two of us find that medications work in the exact same way. Often, what works incredible well for some folks is absolutely horrific for others.
I happen to be someone who had an awful reaction to the other standard narcolepsy treatment. The American Academy of Sleep Medicine determined in December 2007 that Xyrem and Provigil (modafinil) are the best way to treat narcolepsy. The Xyrem allows the narcoleptic to have a more restful sleep, while the Provigil helps to keep the patient more alert during the daytime. For many patients the combination works extremely well. Unfortunately, my friend is having trouble with the Xyrem, and I nearly lost my mind (and my body) taking Provigil. It made me incredibly anxious, particularly in the morning. I know that it worked better than either of my stimulants at keeping me alert, but I am convinced it simply worked too well. I am convinced that the half hour I spent each morning curled in the fetal position was the result of the current dose interacting with the previous days dose (all while coming out of my night time Xyrem dose). I also lost weight hand over fist. I am not sure what the total weight loss was, but I know that I lost 20 pounds in a six weeks period. For the final three weeks, I ate multiple times during the day, cramming in food until it hurt. I still dropped 10 pounds in the course of those three weeks. When I finally got in to see my doctor, he insisted that I stop the Provigil. The anxiety cleared within 36 hours, and my appetite returned.
Since then, I struggled to function on a sizable dose of methylphenidate (Ritalin) and now get by on 50 mg of amphetamine each day. Friends who know how much amphetamine that I take are stunned when I tell them that it simply lets me get out of bed. It does not give me a tremendous boost of energy. Instead, I simply feel like I can actually survive my day. In fact I fell back asleep and faded in and out during this past Sunday morning after taking the amphetamine. That is insane, but that is narcolepsy.
I know this frustration is on my mind today because of my friend, but learning of another narcoleptic's struggle regularly triggers these emotions for me. I would guess that others with the condition experience something similar. How can I not read about someone else's hardship with this bizarre condition and immediately have my own wounds reopen. Beyond the medication roulette that so many of us play, our physicians often are more troublesome than anyone could imagine. This disease is not well understood. As a result, only a handful of doctors (even those in the specialties that treat it - pulmonary and neurology) learn much about it. My first pulmonary doctor did have the insight to order the polysomnogram (an overnight sleep study) and the MSLT - Multiple Sleep Latency Test (basically, a series of naps). What he did NOT do is tell me to stop taking my antidepressant. I have no idea if my narcolepsy would have been identified three years earlier, but I certainly am suspicious.
In that same vein, many other narcoleptics have had doctors suddenly re-evaluate their conditions. They go to new physicians who question the old diagnosis. Some even have doctors who refuse to believe the obvious symptoms that the patients exhibit and will not order the proper sleep tests. As a result most narcoleptics feel like they are banging their heads against brick walls - ones with big, sharp spikes popping out at random intervals. Certainly, the only choice is to cope, but that can be so hard when fatigue is your constant companion. I am lucky. My narcolepsy, while a huge burden, is not accompanied with cataplexy (at least not yet). If I do develop cataplexy I will likely be unable to drive. Thankfully, I can still do my job, although only part-time. I can also help my wife and play with my daughter. But even today I am angry about what I did not do. I finished my grades and cleaned my classroom. I dropped off items for my summer course and did some shopping. I will even manage to do some cleaning, but it is NOT enough. My wife also had a rough day. She is now out playing ultimate Frisbee, which she needs to do. If I don't get the kitchen cleaned, I will be letting her down, but worse I will be creating more work for one of us down the road.
Narcolepsy is an evil and silent menace. Daily, I feel like I wade into combat with it. Today was hard because it seems to have the upper hand on a friend. Maybe that helped it have the upper hand on me too. I know I have been off today. Some of it is the lack of "teaching" in my day. Of course, I will likely write next Monday that my teaching drained too much from me. Darn, that balance concept keeps popping up. There is no magic pill for this condition. There is no special surgery. Narcolepsy just is. Thus, I will go to sleep at 10 PM and get up at 5:30 AM and do my best to find the routine that will help me stay as balanced as possible.
I happen to be someone who had an awful reaction to the other standard narcolepsy treatment. The American Academy of Sleep Medicine determined in December 2007 that Xyrem and Provigil (modafinil) are the best way to treat narcolepsy. The Xyrem allows the narcoleptic to have a more restful sleep, while the Provigil helps to keep the patient more alert during the daytime. For many patients the combination works extremely well. Unfortunately, my friend is having trouble with the Xyrem, and I nearly lost my mind (and my body) taking Provigil. It made me incredibly anxious, particularly in the morning. I know that it worked better than either of my stimulants at keeping me alert, but I am convinced it simply worked too well. I am convinced that the half hour I spent each morning curled in the fetal position was the result of the current dose interacting with the previous days dose (all while coming out of my night time Xyrem dose). I also lost weight hand over fist. I am not sure what the total weight loss was, but I know that I lost 20 pounds in a six weeks period. For the final three weeks, I ate multiple times during the day, cramming in food until it hurt. I still dropped 10 pounds in the course of those three weeks. When I finally got in to see my doctor, he insisted that I stop the Provigil. The anxiety cleared within 36 hours, and my appetite returned.
Since then, I struggled to function on a sizable dose of methylphenidate (Ritalin) and now get by on 50 mg of amphetamine each day. Friends who know how much amphetamine that I take are stunned when I tell them that it simply lets me get out of bed. It does not give me a tremendous boost of energy. Instead, I simply feel like I can actually survive my day. In fact I fell back asleep and faded in and out during this past Sunday morning after taking the amphetamine. That is insane, but that is narcolepsy.
I know this frustration is on my mind today because of my friend, but learning of another narcoleptic's struggle regularly triggers these emotions for me. I would guess that others with the condition experience something similar. How can I not read about someone else's hardship with this bizarre condition and immediately have my own wounds reopen. Beyond the medication roulette that so many of us play, our physicians often are more troublesome than anyone could imagine. This disease is not well understood. As a result, only a handful of doctors (even those in the specialties that treat it - pulmonary and neurology) learn much about it. My first pulmonary doctor did have the insight to order the polysomnogram (an overnight sleep study) and the MSLT - Multiple Sleep Latency Test (basically, a series of naps). What he did NOT do is tell me to stop taking my antidepressant. I have no idea if my narcolepsy would have been identified three years earlier, but I certainly am suspicious.
In that same vein, many other narcoleptics have had doctors suddenly re-evaluate their conditions. They go to new physicians who question the old diagnosis. Some even have doctors who refuse to believe the obvious symptoms that the patients exhibit and will not order the proper sleep tests. As a result most narcoleptics feel like they are banging their heads against brick walls - ones with big, sharp spikes popping out at random intervals. Certainly, the only choice is to cope, but that can be so hard when fatigue is your constant companion. I am lucky. My narcolepsy, while a huge burden, is not accompanied with cataplexy (at least not yet). If I do develop cataplexy I will likely be unable to drive. Thankfully, I can still do my job, although only part-time. I can also help my wife and play with my daughter. But even today I am angry about what I did not do. I finished my grades and cleaned my classroom. I dropped off items for my summer course and did some shopping. I will even manage to do some cleaning, but it is NOT enough. My wife also had a rough day. She is now out playing ultimate Frisbee, which she needs to do. If I don't get the kitchen cleaned, I will be letting her down, but worse I will be creating more work for one of us down the road.
Narcolepsy is an evil and silent menace. Daily, I feel like I wade into combat with it. Today was hard because it seems to have the upper hand on a friend. Maybe that helped it have the upper hand on me too. I know I have been off today. Some of it is the lack of "teaching" in my day. Of course, I will likely write next Monday that my teaching drained too much from me. Darn, that balance concept keeps popping up. There is no magic pill for this condition. There is no special surgery. Narcolepsy just is. Thus, I will go to sleep at 10 PM and get up at 5:30 AM and do my best to find the routine that will help me stay as balanced as possible.
Sunday, June 8, 2008
Finally Accepting My Own Advice
For years I have encourage students to write when they are upset, or anxious, or depressed, or angry. I have harped on the therapeutic values of writing and promoted the value of writing daily - both for academic improvement and mental relief. In the midst of all of that, I often felt like the biggest hypocrite ever to lead a class. While my charges often found my suggestion fulfilling, I never found a way to practice what I preached. Certainly, I attempted to journal at times. I also have a decent collection of writing with which I tinkered sporadically. But, writing on a consistent and frequent basis managed to elude me - until now.
This blog has become a vital component of my sanity. I knew that even before this past week, but my lack of output over the last seven days has been unbearable. While I realize that my bubbling animosity has a multitude of causes, a portion of it definitely grew out of my unfulfilled need to express myself. Unpacking my anxieties has become a vital piece of my routine. I am also amused that my need to be "more selfish" has finally resulted in at least one tangible (and definable) activity. I do plan to discover more elements of my life that are specifically mine, but it is incredible to realize that I need to post here simply to be at peace with myself.
Yes, I worried all week about what my "regular readers" might think if I didn't post soon, but even more powerfully, I knew that I needed to write about my week simply to stay sane. What strikes me as most humorous about this realization is my own attitude about technology. If anyone had told me three months ago that blogging would become as important in my life as finding a correct diagnosis or feeling supported by my men's group, I would have laughed in your face. While I have often actively supported the use of technology in the classroom, I have never fully understood the impact that computers can have on an individual's life. Part of my ability to "cope" with narcolepsy is directly linked to computing. I have NEVER been able to journal, now suddenly it is a core piece of me. Why? Now, I know that people are reading it. I want to help others by putting my thoughts out on the web, but the primary purpose of this writing is for me. For the first time in my life, I am selfish in a way that it vital and necessary. I needed to know that others would read it. My vanity LOVES that my words matter. Even better, some people actually leave comments. My words have touched others. Again, a portion of the thrill is helping someone, but another is that I matter.
Blogging is therapy for me. It is the very thing that I have driven home in writing classes for years, but could never accomplish for myself. Best of all, I know that I would continue to do it now, even if every one of the amazing people who visit my blog disappeared. I need this. If nothing else, like my good friend from La Mancha, it is here that I tilt with windmills. Nothing (short of a major medical miracle) will ever remove narcolepsy from my life. This Erewhon (spell it backwards if you are unfamiliar with the word or Butler's book - you do need to flip the w and the h) of the Internet provides me the place that I can be free of its grasp. I can rage against it and embrace it. I can cry and laugh and fall and rise. Quixotically, I can be the knight I have always seen in my mind's eye, doing battle with the dragon (or Darth) that vexes me to no end. I need this outlet and claim it as my own!
A wonderful post script in my crazy narcoleptic world - although this posting is also dated for Sunday, June 8, I did not finish it until June 9. I fought my Xyrem for at least a half hour, once again attempting to do too much (balance may yet find me), but eventually succumbed to sleep. I wrote the final paragraph and a half of the penultimate paragraph on Monday. That said, I love that it happened that way because I know I never would have hit on those final thoughts as my body was shutting down. Blessing and curse - narcolepsy!
This blog has become a vital component of my sanity. I knew that even before this past week, but my lack of output over the last seven days has been unbearable. While I realize that my bubbling animosity has a multitude of causes, a portion of it definitely grew out of my unfulfilled need to express myself. Unpacking my anxieties has become a vital piece of my routine. I am also amused that my need to be "more selfish" has finally resulted in at least one tangible (and definable) activity. I do plan to discover more elements of my life that are specifically mine, but it is incredible to realize that I need to post here simply to be at peace with myself.
Yes, I worried all week about what my "regular readers" might think if I didn't post soon, but even more powerfully, I knew that I needed to write about my week simply to stay sane. What strikes me as most humorous about this realization is my own attitude about technology. If anyone had told me three months ago that blogging would become as important in my life as finding a correct diagnosis or feeling supported by my men's group, I would have laughed in your face. While I have often actively supported the use of technology in the classroom, I have never fully understood the impact that computers can have on an individual's life. Part of my ability to "cope" with narcolepsy is directly linked to computing. I have NEVER been able to journal, now suddenly it is a core piece of me. Why? Now, I know that people are reading it. I want to help others by putting my thoughts out on the web, but the primary purpose of this writing is for me. For the first time in my life, I am selfish in a way that it vital and necessary. I needed to know that others would read it. My vanity LOVES that my words matter. Even better, some people actually leave comments. My words have touched others. Again, a portion of the thrill is helping someone, but another is that I matter.
Blogging is therapy for me. It is the very thing that I have driven home in writing classes for years, but could never accomplish for myself. Best of all, I know that I would continue to do it now, even if every one of the amazing people who visit my blog disappeared. I need this. If nothing else, like my good friend from La Mancha, it is here that I tilt with windmills. Nothing (short of a major medical miracle) will ever remove narcolepsy from my life. This Erewhon (spell it backwards if you are unfamiliar with the word or Butler's book - you do need to flip the w and the h) of the Internet provides me the place that I can be free of its grasp. I can rage against it and embrace it. I can cry and laugh and fall and rise. Quixotically, I can be the knight I have always seen in my mind's eye, doing battle with the dragon (or Darth) that vexes me to no end. I need this outlet and claim it as my own!
A wonderful post script in my crazy narcoleptic world - although this posting is also dated for Sunday, June 8, I did not finish it until June 9. I fought my Xyrem for at least a half hour, once again attempting to do too much (balance may yet find me), but eventually succumbed to sleep. I wrote the final paragraph and a half of the penultimate paragraph on Monday. That said, I love that it happened that way because I know I never would have hit on those final thoughts as my body was shutting down. Blessing and curse - narcolepsy!
Wrestling with Rage
I have always had a problem with extreme outbursts. As a child I nearly snapped my own dog's neck. I also shattered a plate of spaghetti when my emotions overwhelmed me. My men's group finally got to hear about my bathroom abuse when we met last Sunday. I have been able to keep my temper in check for the last few years, but lately I find that I am struggling with my old adversary - uncontrolled animosity.
The urge to lash out still surprises me. My day rolls along decently until some nondescript moment when a tiny inconvenience sends my moods into a rolling boil. Last Sunday (and even tonight to a lesser extent), it was my daughter playing the piano. How insane is that?!? Fortunately, I was able to keep myself in check last weekend, and tonight I never reached the stage of irrationality that tends to scare even me. I do know that I desperately need to be aware of these spikes in my emotions. As a person who has put a fist through a wall, a door and a kitchen cabinet (and attempted to do so recently in a bathroom), I can't afford to assume that "everything will be alright."
I do believe that this recent relapse of rage is connected to pushing myself more of late. I don't offer that insight as an excuse, but simply as an observation. I am attempting to learn my limits within the confines of narcolepsy. One of the best lessons of the past few months is that my boundaries change daily. The extent of my patience and energy is tied to my daily mood, my previous night's sleep, my previous day's work load, my upcoming schedule, my internal demands and expectations, my external demands and expectations, my wife and daughter's behavior, my sinus conditions, my cats, traffic and so many other things my head is literally spinning even pondering it. Now, that is the case for everyone, but I also have a condition that makes me exhausted as a starting point. Loading those other realities on top of narcolepsy is like packing nitroglycerin safely within cases of TNT. I still need to live my life, though.
If I simply retreat from the world, my depression will destroy me. I need to interact with the world. I need an outlet that lets me engage with others. I also need to work on recognizing my own signs and triggers. I must find the language that can nicely let others, particularly my wife and daughter, know that my daily stew is simmering or boiling or over running the pan. No one should be forced to endure my irrational outbursts, including me. At the same time, I must own the rage that is within me. Certainly, it is as much a part of me as the joy and sorrow that are far more endearing emotions. Denying my anger and ire is what gives them unnerving power. And, when I am painfully honest, it is a minor miracle that I don't spend a majority of my day feeling extreme frustration given the nature of my condition. Narcolepsy is AWFUL, and I have a right to be completely irrational at times because of how it screws up my life.
My rage scares my more than I care to admit. I need to keep confronting it, though. It will not go away, not can I deny its existence. Doing so will only ensure that I will eventually do serious harm to myself or someone else. Instead, I need to allow myself safe ways to experience all of my emotions. I need to connect with every part of myself. It stuns me that the longer I continue on this journey to find peace, the more distance it seems that I must cover. Isn't that the way these things always go, though?
The urge to lash out still surprises me. My day rolls along decently until some nondescript moment when a tiny inconvenience sends my moods into a rolling boil. Last Sunday (and even tonight to a lesser extent), it was my daughter playing the piano. How insane is that?!? Fortunately, I was able to keep myself in check last weekend, and tonight I never reached the stage of irrationality that tends to scare even me. I do know that I desperately need to be aware of these spikes in my emotions. As a person who has put a fist through a wall, a door and a kitchen cabinet (and attempted to do so recently in a bathroom), I can't afford to assume that "everything will be alright."
I do believe that this recent relapse of rage is connected to pushing myself more of late. I don't offer that insight as an excuse, but simply as an observation. I am attempting to learn my limits within the confines of narcolepsy. One of the best lessons of the past few months is that my boundaries change daily. The extent of my patience and energy is tied to my daily mood, my previous night's sleep, my previous day's work load, my upcoming schedule, my internal demands and expectations, my external demands and expectations, my wife and daughter's behavior, my sinus conditions, my cats, traffic and so many other things my head is literally spinning even pondering it. Now, that is the case for everyone, but I also have a condition that makes me exhausted as a starting point. Loading those other realities on top of narcolepsy is like packing nitroglycerin safely within cases of TNT. I still need to live my life, though.
If I simply retreat from the world, my depression will destroy me. I need to interact with the world. I need an outlet that lets me engage with others. I also need to work on recognizing my own signs and triggers. I must find the language that can nicely let others, particularly my wife and daughter, know that my daily stew is simmering or boiling or over running the pan. No one should be forced to endure my irrational outbursts, including me. At the same time, I must own the rage that is within me. Certainly, it is as much a part of me as the joy and sorrow that are far more endearing emotions. Denying my anger and ire is what gives them unnerving power. And, when I am painfully honest, it is a minor miracle that I don't spend a majority of my day feeling extreme frustration given the nature of my condition. Narcolepsy is AWFUL, and I have a right to be completely irrational at times because of how it screws up my life.
My rage scares my more than I care to admit. I need to keep confronting it, though. It will not go away, not can I deny its existence. Doing so will only ensure that I will eventually do serious harm to myself or someone else. Instead, I need to allow myself safe ways to experience all of my emotions. I need to connect with every part of myself. It stuns me that the longer I continue on this journey to find peace, the more distance it seems that I must cover. Isn't that the way these things always go, though?
The Father of All Support Groups
Clearly, I have thoroughly enjoyed my experiences in the Facebook and MySpace narcolepsy support groups. I also realize that I have gushed in typical Mike Main fashion about MOONS. Some might find that ridiculous after just one meeting, but others will realize that "that's just Mike!" As great as all of those groups have been (and will continue to be), I need to acknowledge that I would never have gotten to this point without the most important support group in my life - my Men's Group. I also need to clarify that I would not consider my beautiful wife "a support group." She is obviously THE most important person and supporter in my life.
In the spring of 1994, I stumbled into an incredible situation - a group of men who were interested in helping each other to become better people. A wonderful friend and colleague brought me into the group. In the intervening 14 years, every major event and reality of my life has been shared, supported, challenged, loved, questioned, and affirmed by this wonderful collection of characters. While individuals have come and gone, the spirit of the group has constantly remained the same. We each come to be present for each other. Our stories and backgrounds encompass a wide range of experiences, but each of us feels lost in the realities and difficulties of life.
Every two weeks we gather to share, to tell pieces of our stories. We reveal the insecurities and foibles and fears and concerns that plague our daily lives. After all checking in, we negotiate for time. Usually a couple of us then unpack larger aspects of our struggles. The issues range from fights with spouses or bosses to psychological concerns, from career changes to medical conditions. It was within this group that I first began to confront my own inabilities to accept my inadequacies. From these other men, I realized the depths of my own fears and emotions. I also had to own the extent to which I worked to avoid those fears and emotions. For years I had simply attempted to shut everything out. The result was horrid sideways behavior that did nothing but hurt me and worse, those I love.
Most importantly, though, these men showed me that I have a right to be happy. They helped me to start understanding that I must find ways to fill my own soul. Without that, I think my marriage and my teaching career would have ended years ago. For so long, I attempted to give away everything I had that was good. Certainly I still "kept" things for myself, but those were twisted and warped aspects of myself - ideas and behaviors that I wanted to keep hidden and tucked away, actions that could not withstand the light of truth. This group pushed me to start peeling away the layers, to admit my flaws, to embrace both my strengths and weaknesses.
Without them, I never would have had the strength to battle through everything that accompanied my health struggle these last six and a half years. Certainly, times arose even in our group that they challenged me on the "reality" of my condition. But, instead of feeling hopeless (as it so often did in the offices of my many physicians), our confrontation reaffirmed my own belief that something was genuinely wrong. My men's group is the place I am most honest with others and with myself. If I knew there that I had something physically wrong with me, then I could trust that as truth!
Even as I begin this journey into living with my narcolepsy, I value more than ever this support group. While none of them have experience with sleep disorders, I know that they trust me and believe me. They also continue to challenge me to admit my limits and to challenge my boundaries. Best of all, they love me - unconditionally. Just last Sunday, as I took time to share the crazed ups and downs of the previous two weeks, each man in the group gave me strength and affection. They complimented me and confronted me and pushed me and hugged me. I am blessed to have them all.
In the spring of 1994, I stumbled into an incredible situation - a group of men who were interested in helping each other to become better people. A wonderful friend and colleague brought me into the group. In the intervening 14 years, every major event and reality of my life has been shared, supported, challenged, loved, questioned, and affirmed by this wonderful collection of characters. While individuals have come and gone, the spirit of the group has constantly remained the same. We each come to be present for each other. Our stories and backgrounds encompass a wide range of experiences, but each of us feels lost in the realities and difficulties of life.
Every two weeks we gather to share, to tell pieces of our stories. We reveal the insecurities and foibles and fears and concerns that plague our daily lives. After all checking in, we negotiate for time. Usually a couple of us then unpack larger aspects of our struggles. The issues range from fights with spouses or bosses to psychological concerns, from career changes to medical conditions. It was within this group that I first began to confront my own inabilities to accept my inadequacies. From these other men, I realized the depths of my own fears and emotions. I also had to own the extent to which I worked to avoid those fears and emotions. For years I had simply attempted to shut everything out. The result was horrid sideways behavior that did nothing but hurt me and worse, those I love.
Most importantly, though, these men showed me that I have a right to be happy. They helped me to start understanding that I must find ways to fill my own soul. Without that, I think my marriage and my teaching career would have ended years ago. For so long, I attempted to give away everything I had that was good. Certainly I still "kept" things for myself, but those were twisted and warped aspects of myself - ideas and behaviors that I wanted to keep hidden and tucked away, actions that could not withstand the light of truth. This group pushed me to start peeling away the layers, to admit my flaws, to embrace both my strengths and weaknesses.
Without them, I never would have had the strength to battle through everything that accompanied my health struggle these last six and a half years. Certainly, times arose even in our group that they challenged me on the "reality" of my condition. But, instead of feeling hopeless (as it so often did in the offices of my many physicians), our confrontation reaffirmed my own belief that something was genuinely wrong. My men's group is the place I am most honest with others and with myself. If I knew there that I had something physically wrong with me, then I could trust that as truth!
Even as I begin this journey into living with my narcolepsy, I value more than ever this support group. While none of them have experience with sleep disorders, I know that they trust me and believe me. They also continue to challenge me to admit my limits and to challenge my boundaries. Best of all, they love me - unconditionally. Just last Sunday, as I took time to share the crazed ups and downs of the previous two weeks, each man in the group gave me strength and affection. They complimented me and confronted me and pushed me and hugged me. I am blessed to have them all.
Chronic Means Always
Sorry for both the week long absence and the subsequent unloading of my entire brain in an evening (the reason I am posting 3 or 4 times tonight). While meeting other narcoleptics was the best thing that happened at MOONS, I also greatly appreciated Elizabeth Nager's address to the group. While I have been working to recognize the chronic nature of this condition for a few months now, it is vital to have that same information come from an external source as well as my own tiny mind.
The invisible nature of narcolepsy is one of the most insidious aspects of the disease. NO ONE who knows me would guess that I am narcoleptic. One of the biggest reasons is that I am energized by others. I used to describe to colleagues, even on my worst days, that I would feel "fine" while teaching, but as soon as I stopped, it felt like someone pulled the plug - literally. Even as I am conscious of my own condition now, I find myself being surprised when I experience a drop in energy after a great conversation with a friend. My personality naturally belies my condition, but even other narcoleptics experience similar frustrations. The basic problem is that your sleep cycle is completely goofed up. That sounds so innocuous , and yet it is a devastating condition.
Narcoleptics, even when medicated, RARELY sleep well. We are constantly tired. The comparison would be if a person without narcolepsy stayed awake for three days and nights. I doubt that most people would even be able to do that, let alone function by the third day. Yet, that is the reality that virtually every narcoleptic faces. Then, one needs to add to that the possibility of cataplexy (the complete loss of muscle control in a limb or the entire body), sleep paralysis (literally, not being able to move upon waking from sleep), and hynogogic dreams (horrid dreams that ARE real in the sleeping narcoleptic's mind). On top of that, most narcoleptics struggle with short term memory and daily functionality. Yet, the entire condition is simply written off by many people. Families often assume the narcoleptic is lazy. Friends give will intentioned, but futile advice, "get more sleep," "try to balance your work load," and my favorite, "you know, everyone has bad days." It is not that people are cruel, but how could anyone understand what this feel like, or even believe it! I have narcolepsy and regularly must remind myself that my own expectations are ridiculous.
Perhaps those internal standards are the most important reason that I must remember the chronic nature of this condition. I have been a workaholic all my life. Like both of my parents, I have always believed that my duties is to give my all - to my family, to my job, to my commitments. Beyond that, though, I have always know that being "engaged" has allowed me to function, while taking a break usually results in my "laziness" catching up with me. Now of course, I cognitively understand that my extroverted nature allowed me to push well beyond my limits. I also recognize that the "laziness" is NOT my failure - it is my narcolepsy. In many ways I have been blessed. Even as the narcolepsy began to grow in strength, I still managed to push myself to achieve more than should have been possible. Yet, that also set me up for the terrible struggle I constantly wage within myself of late. While I consciously understand that I can no longer teach full-time, or even function alertly for an entire day, my sub-conscious still expects unrealistic outputs. Daily, I berate myself for failing to accomplish litanies of tasks and chores. I struggle to calm myself and remember that those expectations were unrealistic even when my narcolepsy had not manifested itself so openly.
I wish I could simply accept my limits, but old habits just don't die - at all. Daily, my goal remains to accept what the day brings. I am getting better at that, but so many days begin with the same old tape denigrating my efforts to even get out of bed. It is so hard to admit that I am often lucky simply to get out of bed. So many people would see that and immediately write me off as nothing but a slacker. I know that I am FAR from a slacker, but I also know that the images in my head, while impossible to achieve, are firmly entrenched as the ideal. It kills me that I cannot be the husband, dad, teacher, friend, son, brother, or Christian that I want to be. Again, I am well aware that that Michael Main is perhaps the biggest hynogogic dream of all - a nightmare that my brain has created which I never could attain (even if the narcolepsy disappeared tomorrow).
A perfect example of needing to ground myself in the permanence of narcolepsy has been the last few weeks of school. As I have begun the journey of accepting my narcolepsy during this past trimester, I have struggled mightily with my course load. The largest problem has been the toxicity of the course I teach. Film Study was a complete mismatch with my personality, and it undermined the exact thing that makes teaching a good career for me even with my narcolepsy. I am an excellent classroom teacher, but in Film Study I spent 3-4 days each week doing nothing but showing movies in my classroom. Add to that the added exhaustion from simply trying to stay present in the midst of such a difficult situation, and you can soon see how I would be totally shot at the end of each day. As a result I was far behind in my correcting for the course. Thus, as the end of the trimester approached, I knew that the grading process would be tremendously difficult. I have NOT been a good teacher when it comes to helping my students improve their writing. I have also not done a good job of holding them accountable for the less than acceptable work that I received as crunch time arrived. Part of me simply wants to destroy any sense of ego and pride that I have left. Fortunately, another (stronger) part realizes that I have done the best that I could. I also KNOW that my students did learn a tremendous amount about film. They gained knowledge in my course. While the end result is not even close to what my hopes were, I can be at peace with what resulted in the end. But, I still manage to kick myself when I lose sight of that more balanced recognition.
Narcolepsy is tremendously frustrating. It eats at me every day. The fatigue and disappointment gnaw at my core. But, that is NORMAL. Narcolepsy is chronic. It does not go away. I simply hope to enjoy the good days and to weather the bad ones. Being bitter and angry and petty will not change my reality. Of course, those emotions are also a natural part of the process. When they rear their heads, I will work to ride the emotions and then let them pass. It is the only choice I have, IF I want to stay sane that is...
The invisible nature of narcolepsy is one of the most insidious aspects of the disease. NO ONE who knows me would guess that I am narcoleptic. One of the biggest reasons is that I am energized by others. I used to describe to colleagues, even on my worst days, that I would feel "fine" while teaching, but as soon as I stopped, it felt like someone pulled the plug - literally. Even as I am conscious of my own condition now, I find myself being surprised when I experience a drop in energy after a great conversation with a friend. My personality naturally belies my condition, but even other narcoleptics experience similar frustrations. The basic problem is that your sleep cycle is completely goofed up. That sounds so innocuous , and yet it is a devastating condition.
Narcoleptics, even when medicated, RARELY sleep well. We are constantly tired. The comparison would be if a person without narcolepsy stayed awake for three days and nights. I doubt that most people would even be able to do that, let alone function by the third day. Yet, that is the reality that virtually every narcoleptic faces. Then, one needs to add to that the possibility of cataplexy (the complete loss of muscle control in a limb or the entire body), sleep paralysis (literally, not being able to move upon waking from sleep), and hynogogic dreams (horrid dreams that ARE real in the sleeping narcoleptic's mind). On top of that, most narcoleptics struggle with short term memory and daily functionality. Yet, the entire condition is simply written off by many people. Families often assume the narcoleptic is lazy. Friends give will intentioned, but futile advice, "get more sleep," "try to balance your work load," and my favorite, "you know, everyone has bad days." It is not that people are cruel, but how could anyone understand what this feel like, or even believe it! I have narcolepsy and regularly must remind myself that my own expectations are ridiculous.
Perhaps those internal standards are the most important reason that I must remember the chronic nature of this condition. I have been a workaholic all my life. Like both of my parents, I have always believed that my duties is to give my all - to my family, to my job, to my commitments. Beyond that, though, I have always know that being "engaged" has allowed me to function, while taking a break usually results in my "laziness" catching up with me. Now of course, I cognitively understand that my extroverted nature allowed me to push well beyond my limits. I also recognize that the "laziness" is NOT my failure - it is my narcolepsy. In many ways I have been blessed. Even as the narcolepsy began to grow in strength, I still managed to push myself to achieve more than should have been possible. Yet, that also set me up for the terrible struggle I constantly wage within myself of late. While I consciously understand that I can no longer teach full-time, or even function alertly for an entire day, my sub-conscious still expects unrealistic outputs. Daily, I berate myself for failing to accomplish litanies of tasks and chores. I struggle to calm myself and remember that those expectations were unrealistic even when my narcolepsy had not manifested itself so openly.
I wish I could simply accept my limits, but old habits just don't die - at all. Daily, my goal remains to accept what the day brings. I am getting better at that, but so many days begin with the same old tape denigrating my efforts to even get out of bed. It is so hard to admit that I am often lucky simply to get out of bed. So many people would see that and immediately write me off as nothing but a slacker. I know that I am FAR from a slacker, but I also know that the images in my head, while impossible to achieve, are firmly entrenched as the ideal. It kills me that I cannot be the husband, dad, teacher, friend, son, brother, or Christian that I want to be. Again, I am well aware that that Michael Main is perhaps the biggest hynogogic dream of all - a nightmare that my brain has created which I never could attain (even if the narcolepsy disappeared tomorrow).
A perfect example of needing to ground myself in the permanence of narcolepsy has been the last few weeks of school. As I have begun the journey of accepting my narcolepsy during this past trimester, I have struggled mightily with my course load. The largest problem has been the toxicity of the course I teach. Film Study was a complete mismatch with my personality, and it undermined the exact thing that makes teaching a good career for me even with my narcolepsy. I am an excellent classroom teacher, but in Film Study I spent 3-4 days each week doing nothing but showing movies in my classroom. Add to that the added exhaustion from simply trying to stay present in the midst of such a difficult situation, and you can soon see how I would be totally shot at the end of each day. As a result I was far behind in my correcting for the course. Thus, as the end of the trimester approached, I knew that the grading process would be tremendously difficult. I have NOT been a good teacher when it comes to helping my students improve their writing. I have also not done a good job of holding them accountable for the less than acceptable work that I received as crunch time arrived. Part of me simply wants to destroy any sense of ego and pride that I have left. Fortunately, another (stronger) part realizes that I have done the best that I could. I also KNOW that my students did learn a tremendous amount about film. They gained knowledge in my course. While the end result is not even close to what my hopes were, I can be at peace with what resulted in the end. But, I still manage to kick myself when I lose sight of that more balanced recognition.
Narcolepsy is tremendously frustrating. It eats at me every day. The fatigue and disappointment gnaw at my core. But, that is NORMAL. Narcolepsy is chronic. It does not go away. I simply hope to enjoy the good days and to weather the bad ones. Being bitter and angry and petty will not change my reality. Of course, those emotions are also a natural part of the process. When they rear their heads, I will work to ride the emotions and then let them pass. It is the only choice I have, IF I want to stay sane that is...
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