I awoke this morning in a huge hotel room. The national Narcolepsy Network patient conference begins today in Jacksonville, Florida; I arrived late last night (technically, early this morning). While I remain uneasy about being here, I must confess that my beautiful view of the Saint John's River certainly makes me glad for the break from my daily grind. I also know that I will enjoy many aspects of the conference. Hopefully, I deepen some of the friendships with other PWNs that I began at last year's conference. And, many new PWNs await me as well.
At the same time I could not help feeling loss and regret as I ate during my layover in Atlanta. More than anything, I want to help and connect with other PWNs. While this blog does that, my primary outlet for the past year has been the Narcolepsy Network forums. At least it was until mid-September. I deeply believe that the work of some dear friends in those forums is a huge reason for Narcolepsy Network's recent upswing in membership. Certainly, the number of people using the forums exploded during the last year, but I also know that Narcolepsy Network saw tremendous growth in paid memberships during that time as well. Unfortunately, the people most responsible for making the forums a welcoming and safe place for PWNs will not be with at this conference, nor do they oversee the forums any longer. I remain utterly bewildered as to how the people running Narcolepsy Network could be so obtuse as to not understand the vital role that those forums and individuals have played in the organizations sudden expansion.
The crux of it all for me is that I see the internet as a PWN's most vital tool. Few of us are able to find doctors who truly understand our condition. Although many larger areas do have local support groups, most PWNs need far more connection than a few meetings a year can give. Those factors, added to the reality that many PWNs literally know no one who has their condition until they find a support group (if they can find one), mean that the internet is the one location that a PWN can interact with other PWNs on a consistent basis. Up until mid-September, I would have believe that such a reality was obvious to everyone associated with Narcolepsy Network. Now, though, I have serious doubts.
My experience at last year's national conference was incredible. Certainly, being some place where I knew that 300 other people truly "understood" narcolepsy was a primary component of my joy, but far more significant was meeting face-to-face with many of the people that I had meet online. I am guessing that I will have a similar reaction this year. But, what vexes me to no end is that I doubt that other PWNs will get to have that opportunity in years to come. Since things changed on the Narcolepsy Network forums, I do not see the same level of interaction and vitality there. In fact, it is strange to see that in August the forums were adding 20 new members within 2 to 3 days, but now it might take a week or more to add 20 people. My observation is not researched or vetted, but it definitely seems like the energy in the forums is diminishing.
Clearly, I would love to see my friends back running the Narcolepsy Network forums, but deeper than that I honestly saw those forums as a way to improve significantly life for other PWNs. So many of us struggle to interact with the world because our enery is so limited. But, going online takes far less effort, and one need not drive somewhere to do it. I left my position as a moderator on the forums because of the way my friends had been treated, but I also did it because I did not (and still do not) trust the decision-making of the current board when it comes to Narcolepsy Network's online presence. If they honestly had no idea how active and energetic their forums were, it is a sad reality. Certainly, many other online support groups for narcolepsy exist, but Narcolepsy Network's advantage was (and still is if someone can right the ship) that they are a federally recognized non-profit with a national convention. Adding a strong and lively online community to that would make them the best resource anywhere for people with narcolepsy. Now, I wonder what will happen.
Of course, I could be crazy. Narcolepsy Network might have thrived in the past year due to some other reason. Only time will tell. Also, the other support groups, particularly the Facebook Narcolepsy Support Group and a new site Bite Size Life, might adequately fill any void created by the changes at Narcolepsy Network's forums. Another definite possibility is a group in Second Life called Slumber Society. In the end, though, I need something for me. Selfishly (which I need to make a priority more often for myself), I need to find something that will give me the same fulfillment that my moderating on the Narcolepsy Network forums. Yes, I could "ask" to become a moderator for Narcolepsy Network again, but I will not work for the people currently "in charge" of the forums. As far as I am concerned, they haven't a clue about running a forum effectively. I also know that I can't afford to put in the energy that I did over the past year only to have it ripped away again. Thus, I find myself in limbo. I need to help other PWNs; it is something I do well. But, I also am struggling with my own energy so much that I do not have the time to figure out where to put my (currently non-existent) "narcolepsy support" energy. Time will eventually guide me in the correct direction, and I have learned enough to allow myself to trust the process. Unfortunately, that does not lighten my current mood, nor does it mitigate the hurt that I still feel from the events in September. Still, I know this chapter is just one more lesson that narcolepsy has for me to learn.
Showing posts with label Emotions. Show all posts
Showing posts with label Emotions. Show all posts
Friday, October 23, 2009
Monday, October 19, 2009
Excessive Exhaustion
Although I seem to be handling my struggles better, I find it infuriating that my narcolepsy seems worse than ever. I know that my condition moves in cycles, and I am clearly in a down turn at this time. Still, getting up in the morning is more difficult, and my evening peter out far sooner than they did last year. I am scared that narcolepsy is progressive. I realize that my amphetamine dose is likely less effective, but I also doubt that the drug's impact has curtailed to the extent that I am once again experiencing fogginess in my thinking and the possibility of micro-naps. Even today, my drive home from school felt much closer to the automatic behavior rides I remember from my pre-diagnosis days.
Adding to my concern is that I am at a loss as to where I should turn medically. Since my sleep doctor did not even both to come into the room during my last visit, I doubt he will be much help. While he definitely understands the basics of narcolepsy, he is a pulmonary doctor whose true focus is obstructive sleep apnea. What I need is a neurologist who is well versed in sleep. Sadly, such physicians are few and far between. The "premier" group in the Minneapolis and Saint Paul area apparently has a narrow view of narcolepsy. If you are not text book, then you do NOT have narcolepsy. Since I am functioning less well on my current medicinal routine, I highly doubt that "losing" my diagnosis would do me much good. I boggles my mind that I am NOT going to a doctor because I am afraid that the doctor might tell me I do not have narcolepsy. I KNOW that I have narcolepsy, but the fact that I personally have talked to people who have been to this group worries me enough that I am not going to take the risk.
In many ways my current situation underscores the ridiculous reality that far too many PWNs face - we have a disease that does not "fit" in the contemporary structure of medicine. Most specials focus on a specific body system, but sleep medicine covers an enormous range. Obstructive sleep apnea alone involves the throat, the lungs, the brain, and even the heart and other organs when untreated. So, one can find sleep doctors who are ENTs, pulmonary specialists, neurologists, and even cardiovascular physicians. And, the essential mechanism of OSA is fairly well understood. Narcolepsy on the other hand is an autoimmune disease in which an environmental trigger has caused a genetic predisposition to activate, resulting in the body attacking small cells in the hypothalamus. Thus, those same sleep doctors who treat OSA periodically get PWNs as patients. But, few of them understand narcolepsy (which is still in its infancy in terms of medical insight). The situation only worsens when one realizes that the limited number of PWNs and the extreme nature of our drugs (class II stimulants and sleep aides like sodium oxybate) provide little to no financial incentive for any doctor considering sleep as a primary area of interest. The one small ray of hope is that the recent discovers about narcolepsy may spark significant interest among immunologists - now that it is clear that narcolepsy is an autoimmune disease.
None of that rambling helps my overly sleepy state, however. I remain proud of myself for accepting my situation and for pushing ahead with the best attitude that I can muster. Nonetheless, I abhor that mowing my small lawn today completely did me in. That comes on the heels of a Saturday and Sunday that saw me accomplish little because I was drained from talking to my wife and from confronting another parent. All of that happened on Saturday, but I needed all of Sunday to recover. In fact, I would argue that some of my current lethargy is also linked to my mental and emotional exertion on Saturday. While I know that I am doing the best that I can, the rational side of my brain is screaming about how pathetic the reality is. Yet, I have no choice, but to breath and to accept my disability.
I am looking forward to the Narcolepsy Network conference this weekend. While my relationship with the organization feels shaky at this time, I am thrilled to be going somewhere where my "norm" IS the "norm." Sitting in a room, or even having a casual conversation with a fellow PWN, is tremendously empowering. It reminds me that I am not insane. It also underscores for me that this disease is awful, and yet it is also manageable. Granted, I need to keep working to accept my limits, but I can be productive even with narcolepsy impeding me much of the time.
Adding to my concern is that I am at a loss as to where I should turn medically. Since my sleep doctor did not even both to come into the room during my last visit, I doubt he will be much help. While he definitely understands the basics of narcolepsy, he is a pulmonary doctor whose true focus is obstructive sleep apnea. What I need is a neurologist who is well versed in sleep. Sadly, such physicians are few and far between. The "premier" group in the Minneapolis and Saint Paul area apparently has a narrow view of narcolepsy. If you are not text book, then you do NOT have narcolepsy. Since I am functioning less well on my current medicinal routine, I highly doubt that "losing" my diagnosis would do me much good. I boggles my mind that I am NOT going to a doctor because I am afraid that the doctor might tell me I do not have narcolepsy. I KNOW that I have narcolepsy, but the fact that I personally have talked to people who have been to this group worries me enough that I am not going to take the risk.
In many ways my current situation underscores the ridiculous reality that far too many PWNs face - we have a disease that does not "fit" in the contemporary structure of medicine. Most specials focus on a specific body system, but sleep medicine covers an enormous range. Obstructive sleep apnea alone involves the throat, the lungs, the brain, and even the heart and other organs when untreated. So, one can find sleep doctors who are ENTs, pulmonary specialists, neurologists, and even cardiovascular physicians. And, the essential mechanism of OSA is fairly well understood. Narcolepsy on the other hand is an autoimmune disease in which an environmental trigger has caused a genetic predisposition to activate, resulting in the body attacking small cells in the hypothalamus. Thus, those same sleep doctors who treat OSA periodically get PWNs as patients. But, few of them understand narcolepsy (which is still in its infancy in terms of medical insight). The situation only worsens when one realizes that the limited number of PWNs and the extreme nature of our drugs (class II stimulants and sleep aides like sodium oxybate) provide little to no financial incentive for any doctor considering sleep as a primary area of interest. The one small ray of hope is that the recent discovers about narcolepsy may spark significant interest among immunologists - now that it is clear that narcolepsy is an autoimmune disease.
None of that rambling helps my overly sleepy state, however. I remain proud of myself for accepting my situation and for pushing ahead with the best attitude that I can muster. Nonetheless, I abhor that mowing my small lawn today completely did me in. That comes on the heels of a Saturday and Sunday that saw me accomplish little because I was drained from talking to my wife and from confronting another parent. All of that happened on Saturday, but I needed all of Sunday to recover. In fact, I would argue that some of my current lethargy is also linked to my mental and emotional exertion on Saturday. While I know that I am doing the best that I can, the rational side of my brain is screaming about how pathetic the reality is. Yet, I have no choice, but to breath and to accept my disability.
I am looking forward to the Narcolepsy Network conference this weekend. While my relationship with the organization feels shaky at this time, I am thrilled to be going somewhere where my "norm" IS the "norm." Sitting in a room, or even having a casual conversation with a fellow PWN, is tremendously empowering. It reminds me that I am not insane. It also underscores for me that this disease is awful, and yet it is also manageable. Granted, I need to keep working to accept my limits, but I can be productive even with narcolepsy impeding me much of the time.
Saturday, August 8, 2009
Travel Tension
On the whole, today has been great, but as was the case on the way down to Tennessee, narcolepsy did choose some choice moments to rear its ugly head. In an attempt to create a smooth departure this morning, we all packed last night. Ironically, that effort paid off for us (those things usually backfire in some way). We were on the road by 6:25 AM - a significant improvement from a week ago Friday (when our 6 AM departure turned into 8 AM). My wife was on edge as we left, but I knew that she was definitely sick still, and her angst quickly passed.
The problem, though, was that due to my wife's illness I needed to drive more than I had on the way down. I took my first driving shift right after we entered Kentucky. I managed to get us passed Lexington, which was over 100 miles of our trip. I drove for nearly an hour and a half. Unfortunately, I found myself in heavier traffic toward the end of that time (no doubt due to passing through Lexington). Still, I handled things well, but I could feel some tension building. My wife definitely gets worried as I begin to fade behind the wheel. Still, I was pleased that I drove that far and helped out that much.
Because it was so early, we continued to push on. My wife drove us into Indiana. We finally stopped for lunch at this great little restaurant in Scottsburg (Jeeves & Company). Our lunch was wonderful, and I took my second dose of amphetamine right after we ate. My wife definitely needed me to drive again. I knew that I was already exhausted, even with the stimulant, but felt I had no other choice. Thus, I got behind the wheel and knew that I would be fine in terms of safety. The problem was that driving would take all of my energy. My wife dozed during some of the time, but she woke up as we began approaching Indianapolis. Like Lexington, traffic began to get dicey as we approached the metropolitan area. Finally, a truck cut into the left lane (at 65 mph) when the car in front of me and I were both moving at 80 mph. Needless to say, I was furious. I then drove through the next 30 to 40 miles in rapid, lane-shifting traffic. I wanted to get us around Indianapolis before switching. But, the speed and my bad mood made my wife more and more anxious.
When we finally reached an exit that would allow us to switch, I was attempting to explain my awful mood to my wife. Sadly, the gas station we wanted to reach was not immediately at the exit, AND the bottom of the ramp was incredibly confusing. I did make the correct decision, but had no way to know that at the time. Because every ounce of energy that I had was going into keeping the car on the road safely, I derided myself for the rotten signage. This only upset my wife more. After the mile had almost passed, we were approaching a different interstate and could not see the gas station. Because I was so far gone, I cut my wife off as she was attempting to "help" me. I plead with her to say nothing and to let me figure out how to find the gas station. Seconds later, I spotted it just passed the other interstate, but she also saw it and chose to let me know where it was. That definitely sent me into a tailspin.
I got us to the station, and we snapped at each other about the situation. We soon reconciled, but as I got out right after the initial exchange, I was literally shaking aas I was pumping the gas. I had nothing left from the driving. In fact, I nearly exploded when the pump failed to print my receipt. Fortunately, my wife had already apologized to me. I managed to walk (or stomp) inside and nicely ask for a copy. I then apologized to my wife and again attempted to explain how hard such a situation is for me. It drives me nuts that my energy is so limited in moments like that. I truly did not have the ability to interact with her (or myself) civilly because I needed all of my mental accuity to keep us safe in the car. That is crazy, but it is also reality.
Fortunately, my wife and I are exceptional at sharing, listening, and forgiving. I know that she meant well, and she knows that I truly did not try to upset her. She also appreciates that I did much more of the driving today. She still did the majority, but I did drive for over 3 hours and handled over 200 of our miles. Narcolepsy will certainly continue to be a bane - in my travels, in my marriage, in my life. But, I must simply continue to accept what it gives me and make the best of each day. Gratefully, we got to our hotel by 3 PM and have had a slow evening to gather strength for tomorrow. We are all excited to get home. I hope that tomorrow goes well and that my narcolepsy lets me have enough strength to drive and to be kind even when the roads are tense.
The problem, though, was that due to my wife's illness I needed to drive more than I had on the way down. I took my first driving shift right after we entered Kentucky. I managed to get us passed Lexington, which was over 100 miles of our trip. I drove for nearly an hour and a half. Unfortunately, I found myself in heavier traffic toward the end of that time (no doubt due to passing through Lexington). Still, I handled things well, but I could feel some tension building. My wife definitely gets worried as I begin to fade behind the wheel. Still, I was pleased that I drove that far and helped out that much.
Because it was so early, we continued to push on. My wife drove us into Indiana. We finally stopped for lunch at this great little restaurant in Scottsburg (Jeeves & Company). Our lunch was wonderful, and I took my second dose of amphetamine right after we ate. My wife definitely needed me to drive again. I knew that I was already exhausted, even with the stimulant, but felt I had no other choice. Thus, I got behind the wheel and knew that I would be fine in terms of safety. The problem was that driving would take all of my energy. My wife dozed during some of the time, but she woke up as we began approaching Indianapolis. Like Lexington, traffic began to get dicey as we approached the metropolitan area. Finally, a truck cut into the left lane (at 65 mph) when the car in front of me and I were both moving at 80 mph. Needless to say, I was furious. I then drove through the next 30 to 40 miles in rapid, lane-shifting traffic. I wanted to get us around Indianapolis before switching. But, the speed and my bad mood made my wife more and more anxious.
When we finally reached an exit that would allow us to switch, I was attempting to explain my awful mood to my wife. Sadly, the gas station we wanted to reach was not immediately at the exit, AND the bottom of the ramp was incredibly confusing. I did make the correct decision, but had no way to know that at the time. Because every ounce of energy that I had was going into keeping the car on the road safely, I derided myself for the rotten signage. This only upset my wife more. After the mile had almost passed, we were approaching a different interstate and could not see the gas station. Because I was so far gone, I cut my wife off as she was attempting to "help" me. I plead with her to say nothing and to let me figure out how to find the gas station. Seconds later, I spotted it just passed the other interstate, but she also saw it and chose to let me know where it was. That definitely sent me into a tailspin.
I got us to the station, and we snapped at each other about the situation. We soon reconciled, but as I got out right after the initial exchange, I was literally shaking aas I was pumping the gas. I had nothing left from the driving. In fact, I nearly exploded when the pump failed to print my receipt. Fortunately, my wife had already apologized to me. I managed to walk (or stomp) inside and nicely ask for a copy. I then apologized to my wife and again attempted to explain how hard such a situation is for me. It drives me nuts that my energy is so limited in moments like that. I truly did not have the ability to interact with her (or myself) civilly because I needed all of my mental accuity to keep us safe in the car. That is crazy, but it is also reality.
Fortunately, my wife and I are exceptional at sharing, listening, and forgiving. I know that she meant well, and she knows that I truly did not try to upset her. She also appreciates that I did much more of the driving today. She still did the majority, but I did drive for over 3 hours and handled over 200 of our miles. Narcolepsy will certainly continue to be a bane - in my travels, in my marriage, in my life. But, I must simply continue to accept what it gives me and make the best of each day. Gratefully, we got to our hotel by 3 PM and have had a slow evening to gather strength for tomorrow. We are all excited to get home. I hope that tomorrow goes well and that my narcolepsy lets me have enough strength to drive and to be kind even when the roads are tense.
Friday, August 7, 2009
Slow Startup
Today is our last day in Tennessee. We will rise early tomorrow and hit the road. While I am not looking forward to two days in a car, I am looking forward to getting back home. I feel good that I still have two weeks before I am back at school. I have oodles of things to do - at home and for school, but I will continue to approach them at the pace that I can handle. Today definitely feels similar to that. My wife went on a driving loop last night by herself. She enjoyed it immensely, but came home even sicker than she was. Thus, I am the only one up this morning. Hopefully, we will still try to visit some of the craft shops today, but I love that we can have such a relaxed start to our "final day." Far too often, a day like this is treated frenetically, cramming in activities for each waking moment. Instead, we will take in what we can and simply appreciate the chance to spend time together.
I find myself grateful for the many opportunities to slow down my life and expectations. My brain continues to push me, but I am getting better at letting go. I am even able to appreciate the fleeting moments when I do achieve a level of balance. Those moments are not nearly as frequent as I would like, but the fact that success brings joy rather than regret is a huge improvement. For years, a moment of serenity would bring angst rather than relief. I would berate myself for my inability to "feel serene" more often - how screwed up is that? Thus, I am highly content to lounge this morning, at peace with my upbeat outlook.
That said, I do need to find a bit more structure to my days when I get back home. The start of school is still three weeks away, but I need to begin adapting my schedule and routine now, since I know that a radical shift will not sit well with my brain or physical health. I also need to find a physical routine. The hiking and rafting has been great, but my body hurts all over as a result. More than anything else, I need to strengthen my knees. They are hurting constantly these days. I must spend some time over the next three weeks to get them ready for standing frequently during the school day. If I don't, it will be a LONG year. I find juggling exercise, my family, my sanity, and my job one of the most frustrating aspects of narcolepsy. All of them take energy from me, but all of them are vitally necessary.
I find myself grateful for the many opportunities to slow down my life and expectations. My brain continues to push me, but I am getting better at letting go. I am even able to appreciate the fleeting moments when I do achieve a level of balance. Those moments are not nearly as frequent as I would like, but the fact that success brings joy rather than regret is a huge improvement. For years, a moment of serenity would bring angst rather than relief. I would berate myself for my inability to "feel serene" more often - how screwed up is that? Thus, I am highly content to lounge this morning, at peace with my upbeat outlook.
That said, I do need to find a bit more structure to my days when I get back home. The start of school is still three weeks away, but I need to begin adapting my schedule and routine now, since I know that a radical shift will not sit well with my brain or physical health. I also need to find a physical routine. The hiking and rafting has been great, but my body hurts all over as a result. More than anything else, I need to strengthen my knees. They are hurting constantly these days. I must spend some time over the next three weeks to get them ready for standing frequently during the school day. If I don't, it will be a LONG year. I find juggling exercise, my family, my sanity, and my job one of the most frustrating aspects of narcolepsy. All of them take energy from me, but all of them are vitally necessary.
Monday, July 20, 2009
Trouble Tracking
Today has been odd. I know that I got things done, but I just don't feel like I did much. I had trouble getting going this morning. Some of that is residue from this weekend - I know that Mondays are hard when I have pushed during the weekend (and that definitely happened between the anxiety and the excitement of the play plus the physical exertion of striking the set). I also know that some of my discomfort today is connected to the numerous things that I feel looming in my life. Whether it is work for school or the multitude of house projects, there is much to do and the time is slowly dwindling. The hardest part is knowing that I probably can't get to everything that I would like to do. Well, that and the fact that I want to finish everything within a day. I do find it funny that my baseline is still, "I should be able to do that by the end of the day." At least I know it is ridiculous, but I still experience some emotional push back from my subconscious.
I did manage to take care of a few things for school today. Mostly, I got our writing curriculum books to two of my three colleagues. Hopefully, I will take care of the third person before the end of the week. I also did a little shopping for myself, and I had a great conversation with a couple of friends. While those interactions were unplanned, there were wonderfully refreshing. I just wish that I wouldn't do my mental calculus after them (I just spent 30 minutes talking to that person, which means I can only get to this now...). Just one more aspect of my anxiety and my narcolepsy having a little party in my brain. More than anything, today is reminding me that I need to set schedules for my days like this. As nice as it is that my daughter does not have rehearsal every afternoon, that event forced a small amount of scheduling into my days. Now, things are too open, and I run the risk of that paralyzing me. Hopefully, tomorrow will feel more productive. I also have some time tonight that I can use to my advantage.
Finally, I need to mention that I did advocate for myself today. My wife just scheduled her conference for October. While we knew that her annual medical writers conference is in direct conflict of my Narcolepsy Network, we have already planned that we are both going to attend our conferences. However, when she mentioned signing up for hers, I then asked if we could get things in order for my conference. I definitely hope that we can do that soon. While it is not much, knowing that I have a flight to Jacksonville and a hotel room will take some pressure off of the many things on my mind. Silly, yes, but real.
I did manage to take care of a few things for school today. Mostly, I got our writing curriculum books to two of my three colleagues. Hopefully, I will take care of the third person before the end of the week. I also did a little shopping for myself, and I had a great conversation with a couple of friends. While those interactions were unplanned, there were wonderfully refreshing. I just wish that I wouldn't do my mental calculus after them (I just spent 30 minutes talking to that person, which means I can only get to this now...). Just one more aspect of my anxiety and my narcolepsy having a little party in my brain. More than anything, today is reminding me that I need to set schedules for my days like this. As nice as it is that my daughter does not have rehearsal every afternoon, that event forced a small amount of scheduling into my days. Now, things are too open, and I run the risk of that paralyzing me. Hopefully, tomorrow will feel more productive. I also have some time tonight that I can use to my advantage.
Finally, I need to mention that I did advocate for myself today. My wife just scheduled her conference for October. While we knew that her annual medical writers conference is in direct conflict of my Narcolepsy Network, we have already planned that we are both going to attend our conferences. However, when she mentioned signing up for hers, I then asked if we could get things in order for my conference. I definitely hope that we can do that soon. While it is not much, knowing that I have a flight to Jacksonville and a hotel room will take some pressure off of the many things on my mind. Silly, yes, but real.
Friday, July 17, 2009
Properly Proud Papa
I rarely post twice in the same day, but I needed to write this immediately upon returning home. My daughter was amazing. The entire show came together phenomenally well, but my daughter's performance took my breath away. Her acting already has impressed me in the past, but what she did on stage tonight blew my mind. She stayed in character the entire time, even though she is on the stage the entire time. She even created some ad lib when one of the performers was late to the stage. If I had only seen her act tonight, I would be walking on a cloud for weeks. She was that good! And, the fact that the entire cast pulled together as they did tonight is a true testament to the hard work these kids have all put into the show.
What I was completely unprepared for, though, was the stunning beauty of my daughter's voice. I have heard my daughter sing before. I have even heard her sing the songs to this show. But, my daughter apparently has a WHOLE different gear for "performing." She sang with power, grace, style, and energy tonight. Her range is impressive, particularly considering her lack of any formal voice training. Even more impressive, though, was the richness and strength in her tone. She injected tremendous emotion into her words. Her big solos are in the second half of the show, after spending a full hour under the lights speaking and performing non-stop during Act I. The fact that she could still speak is incredible, but her first song in particular literally made people cry it was so touching. And while the lyrics are a small piece of that, far more of the tenderness was due to the way my daughter sang it. I am awed by her.
What I was completely unprepared for, though, was the stunning beauty of my daughter's voice. I have heard my daughter sing before. I have even heard her sing the songs to this show. But, my daughter apparently has a WHOLE different gear for "performing." She sang with power, grace, style, and energy tonight. Her range is impressive, particularly considering her lack of any formal voice training. Even more impressive, though, was the richness and strength in her tone. She injected tremendous emotion into her words. Her big solos are in the second half of the show, after spending a full hour under the lights speaking and performing non-stop during Act I. The fact that she could still speak is incredible, but her first song in particular literally made people cry it was so touching. And while the lyrics are a small piece of that, far more of the tenderness was due to the way my daughter sang it. I am awed by her.
Paying Penance
In the cosmic ebb and flow of my life, I knew a day like today was coming soon. Last night, for the third night in a row, I did not make it to my bed until "today" (meaning post-midnight). While it is summer, and I do not have looming deadlines, I can ill afford to get wildly off my regular schedule. The transition back would take me one to two weeks at least. That said, I am then faced with getting up after only one dose of Xyrem. That prospect is also rotten because I eventually get overly run down and cranky. I finally decided last night that I would actually do my second dose of Xyrem at 4 AM and would then be way off my regular routine.
Instead, I slept through the alarm until 5:15 AM. Since today is the opening show in my daughter's play, I figured I'd better not risk sleeping the entire morning away. Thus, I rose at 5:30 AM after only the one dose of Xyrem. Needless to say, I feel terrible today. My body is furious that I have not gotten nearly enough sleep of late. I also am feeling bizarre pains in the strangest of places because I have done little exercising this past week. I am so "off" that I actually had a sleep attack mid-morning while trying to do some work. I know it is bad when my sleep attacks are strong than 30 mg of amphetamine less than 2 hours after I have taken it.
Fortunately, the day has been extremely low key at our home. I had hoped to run some errands, but I realized mid-morning that it would be unwise for me to try. Instead, I simply plodded my way through some work for school. It was nothing more than data entry, but it will help us throughout the year. One of my greatest lessons from my narcolepsy is to accept the situation at hand and then to allow myself to adjust to it. Even a year ago, my day going sour would have derailed me completely. That would be bad on any day, but if I had lost my cool today, it would have been grossly unfair to my daughter (and my wife).
Underlying the normal zaniness of our home, a subtle (yet overt) pressure has been building all week. Tonight at 7 PM CDT, my daughter will perform with other children from her school - Wonderland! The Musical Misadventures of a Girl Named Alice. Given my daughter's personality, the tension would have been mounting even if her role was nothing more than a chorus member, but she is actually Alice in the show. She definitely has worked hard and is super excited, but her butterflies are likely the size of Mothra right now. AND, her mother (my wife) might be even more nervous. I have no doubt that she will be fantastic, but I also know that my daughter is like me, so she will dwell on every missed line and bad note. Our daugher will be on the stage for the entire performance, has approximately 300 lines, and sing the majority of two of the songs as solos. In other words, she is working her tail off the entire time. Having run lines with her, I know she will be spectacular and the show will be a hit.
But, even "knowing" that, it would have been unwise for me to risk coming unglued today. Beyond working on my few minor items, I tried to help my wife and to support my daughter. I also worked to keep the mood light. I suggested that we watch Shakespeare in Love. Not only is an "actor's movie" with all of the behind the scenes silliness, but also it is a great reminder that "it all works out in the end." As Henslowe says, we don't know why or how - it's a mystery. I think it is important for my daugher to have that in mind for tonight. The cast has first graders through graduated eighth graders in it. They also have NEVER had an uninterrupted run through of the play - the music director is a tad flaky. When the first "complete" run is on opening night, it can be unnerving. But I am hoping that my daughter can remember that as long as they smile, laugh, sing, and do most of their lines in order, everyone will adore the show.
My final regret in all of this, though, is that part of me wishes that I did not have to go tonight. Truth be told, I am too tired to appreciate it. Nevertheless, I would not miss this for the world. My daughter is far too important to me to let my narcolepsy get in the way. At the same time, I dearly hope that I will be able to forgive myself if I fall asleep at her show. I don't think that will happen, but anything is possible, especially the way I am feeling today. And, even as I write that I realize that I have yet to take my second dose of amphetamine for today - oops! I LOVE this crazy condition. I need to get those meds right now, but my error may just be the thing that keeps me awake through the entire show.
Instead, I slept through the alarm until 5:15 AM. Since today is the opening show in my daughter's play, I figured I'd better not risk sleeping the entire morning away. Thus, I rose at 5:30 AM after only the one dose of Xyrem. Needless to say, I feel terrible today. My body is furious that I have not gotten nearly enough sleep of late. I also am feeling bizarre pains in the strangest of places because I have done little exercising this past week. I am so "off" that I actually had a sleep attack mid-morning while trying to do some work. I know it is bad when my sleep attacks are strong than 30 mg of amphetamine less than 2 hours after I have taken it.
Fortunately, the day has been extremely low key at our home. I had hoped to run some errands, but I realized mid-morning that it would be unwise for me to try. Instead, I simply plodded my way through some work for school. It was nothing more than data entry, but it will help us throughout the year. One of my greatest lessons from my narcolepsy is to accept the situation at hand and then to allow myself to adjust to it. Even a year ago, my day going sour would have derailed me completely. That would be bad on any day, but if I had lost my cool today, it would have been grossly unfair to my daughter (and my wife).
Underlying the normal zaniness of our home, a subtle (yet overt) pressure has been building all week. Tonight at 7 PM CDT, my daughter will perform with other children from her school - Wonderland! The Musical Misadventures of a Girl Named Alice. Given my daughter's personality, the tension would have been mounting even if her role was nothing more than a chorus member, but she is actually Alice in the show. She definitely has worked hard and is super excited, but her butterflies are likely the size of Mothra right now. AND, her mother (my wife) might be even more nervous. I have no doubt that she will be fantastic, but I also know that my daughter is like me, so she will dwell on every missed line and bad note. Our daugher will be on the stage for the entire performance, has approximately 300 lines, and sing the majority of two of the songs as solos. In other words, she is working her tail off the entire time. Having run lines with her, I know she will be spectacular and the show will be a hit.
But, even "knowing" that, it would have been unwise for me to risk coming unglued today. Beyond working on my few minor items, I tried to help my wife and to support my daughter. I also worked to keep the mood light. I suggested that we watch Shakespeare in Love. Not only is an "actor's movie" with all of the behind the scenes silliness, but also it is a great reminder that "it all works out in the end." As Henslowe says, we don't know why or how - it's a mystery. I think it is important for my daugher to have that in mind for tonight. The cast has first graders through graduated eighth graders in it. They also have NEVER had an uninterrupted run through of the play - the music director is a tad flaky. When the first "complete" run is on opening night, it can be unnerving. But I am hoping that my daughter can remember that as long as they smile, laugh, sing, and do most of their lines in order, everyone will adore the show.
My final regret in all of this, though, is that part of me wishes that I did not have to go tonight. Truth be told, I am too tired to appreciate it. Nevertheless, I would not miss this for the world. My daughter is far too important to me to let my narcolepsy get in the way. At the same time, I dearly hope that I will be able to forgive myself if I fall asleep at her show. I don't think that will happen, but anything is possible, especially the way I am feeling today. And, even as I write that I realize that I have yet to take my second dose of amphetamine for today - oops! I LOVE this crazy condition. I need to get those meds right now, but my error may just be the thing that keeps me awake through the entire show.
Monday, July 13, 2009
Birthday of Beauty
Today is my wife's birthday. Hopefully, I have done enough (and will continue to do enough) to let her know how much I adore her. One of my greatest frustrations with narcolepsy is that it often keeps me from doting on my wife to the levels that she deserves. She is truly amazing. Beyond putting up with me, my wife manages to excel at an incredibly difficult job, to provide tremendous care to our daughter, and to maintain our household at levels that dazzle me.
I do hope that other people have been able to marry (or to be partners) with their best friend. My wife is an amazing blessing to me. She supported me throughout the awful journey that eventually led to my diagnosis, and she continued to keep my spirits up when I struggled to find the right meds. But, beyond those things, my wife provides me (and our daughter and the world) positive energy on a daily basis. She is quick to laugh and has a glorious sense of humor. She can even been childishly silly, which I love because I can too!
Yet, her magnificent intelligent regularly awes the doctors in the Department of Medicine at the University of Minnesota. My wife edits articles and grant proposals, particularly high level NIH grants. And, she is exceptional at what she does. Every physician, or other professor, who works with her raves about her talent as a writer and editor. My wife even has two published books. While multiple authors worked on the books, my wife did a vast majority of the "final" writing. The first book explored how to create a research productive department, while the second delves into effective mentoring.
The most amazing thing, though, is that my wife's great talent has nothing to do with her brilliance. Simply put, my wife is the kindest, sweetest, and most earnest person I have ever known. She goes out of her way to help others. She is also loyal to a fault. In fact, she is so loyal that she will choose honesty over self-preservation. She calls out injustice and dishonesty even when she knows that it may cost her social status. My wife exudes grace and class.
In the end, though, my wife is a person who deserves far more than the world gives her. I wish that my narcolepsy did not make it so difficult for me. I would love to shower her with gifts and affection. She deserves to be placed upon a pedestal. While I know I can't give her much, I will hold her tonight and whisper sweetly in her ear. One thing I know, simply letting my wife know how much she is appreciated will mean the world to her because she is a saint!
I do hope that other people have been able to marry (or to be partners) with their best friend. My wife is an amazing blessing to me. She supported me throughout the awful journey that eventually led to my diagnosis, and she continued to keep my spirits up when I struggled to find the right meds. But, beyond those things, my wife provides me (and our daughter and the world) positive energy on a daily basis. She is quick to laugh and has a glorious sense of humor. She can even been childishly silly, which I love because I can too!
Yet, her magnificent intelligent regularly awes the doctors in the Department of Medicine at the University of Minnesota. My wife edits articles and grant proposals, particularly high level NIH grants. And, she is exceptional at what she does. Every physician, or other professor, who works with her raves about her talent as a writer and editor. My wife even has two published books. While multiple authors worked on the books, my wife did a vast majority of the "final" writing. The first book explored how to create a research productive department, while the second delves into effective mentoring.
The most amazing thing, though, is that my wife's great talent has nothing to do with her brilliance. Simply put, my wife is the kindest, sweetest, and most earnest person I have ever known. She goes out of her way to help others. She is also loyal to a fault. In fact, she is so loyal that she will choose honesty over self-preservation. She calls out injustice and dishonesty even when she knows that it may cost her social status. My wife exudes grace and class.
In the end, though, my wife is a person who deserves far more than the world gives her. I wish that my narcolepsy did not make it so difficult for me. I would love to shower her with gifts and affection. She deserves to be placed upon a pedestal. While I know I can't give her much, I will hold her tonight and whisper sweetly in her ear. One thing I know, simply letting my wife know how much she is appreciated will mean the world to her because she is a saint!
Sunday, July 12, 2009
Stretched, Stressed, Stunned
I keep thinking that I might have a calm, low-key day. I continue to be wrong. Although yesterday was fantastic, it was also draining. As a result, I awoke exhausted and completely discombobulated. I spent the first part of the morning simply getting my bearings. Eventually, though, I remembered that my lawn needed mowing - desperately. Thus, I shook out the last of my cobwebs and tried to get some blood flowing.
I do continue to question my own sanity because it used to take me thirty minutes to mow my lawn. Now that I own a push-reel mower and a lawn sweeper, it takes significantly longer. The added bonus today was that I had not mowed for nearly two weeks. My grass was frighteningly long, particularly in our front yard. When all was said and done, it took me two hours to finish the lawn, and I know that a few spots could have used more passes with the mower. The physical effort drained me, but I remain committed to doing this. I feel good about helping the environment, and an unforeseen benefit is the fact that I am getting better at letting go of some perfectionist tendencies. The reality is that I will NEVER cut every blade of grass, even if I were using a power mower. Beyond the energy drain, though, the extend time I spent on the lawn meant that I needed to get ready immediately for my MOONS-MN planning meeting.
The MOONS-MN planning meeting went extremely well, but it served as a constant reminder of my many undone tasks. We have a social gathering planned for next Saturday, July 18, which will be a fun "snack potluck." We are hoping that the afternoon provides our members with the chance to talk and to interact with one another in a casual and informal way. We also got our September 12 meeting planned. It might the most productive planning meeting that we have ever had. But, that efficiency did not diminish the gnawing sense of anxiety in the back of my brain. I just need to remember that I will keep doing my best and accept what I cannot complete and celebrate what I can.
In many ways, the toughest part of my day was yet to come. As I was on my way home, my wife called. Thankfully, I was not driving because she definitely needed to talk to me. We were on the phone together for the entire twenty minutes that it took to get me home. Then, we talked for another hour upon my arrival. My wife had an extremely difficult interaction with another parent today. It is even more frustrating because this person was essentially attacking our daughter. While some of what this individual said might be true, the reality is that this person was only looking at the situation from one point of view, not taking any of the possibilities for our daughter into account. Even more remarkable, the other person dismissed comments from my wife about some of the struggles that our daughter has experienced. By the time I got home, my wife was seething. By the time our conversation ended, I had worked my own way through seething and was simply sad and disappointed. I think the great misfortune in all of this is that as a result of one parent being overly aggressive and overly involved, two children may lose a friendship. Hopefully, that will not be the case.
I have no doubt that tomorrow will arrive with its own challenges. I hope that narcolepsy will allow me the energy I need to keep working my way back to an even keel. If not, I will do what I can, take a breath, and work to let go of all of my challenges and disappointments.
I do continue to question my own sanity because it used to take me thirty minutes to mow my lawn. Now that I own a push-reel mower and a lawn sweeper, it takes significantly longer. The added bonus today was that I had not mowed for nearly two weeks. My grass was frighteningly long, particularly in our front yard. When all was said and done, it took me two hours to finish the lawn, and I know that a few spots could have used more passes with the mower. The physical effort drained me, but I remain committed to doing this. I feel good about helping the environment, and an unforeseen benefit is the fact that I am getting better at letting go of some perfectionist tendencies. The reality is that I will NEVER cut every blade of grass, even if I were using a power mower. Beyond the energy drain, though, the extend time I spent on the lawn meant that I needed to get ready immediately for my MOONS-MN planning meeting.
The MOONS-MN planning meeting went extremely well, but it served as a constant reminder of my many undone tasks. We have a social gathering planned for next Saturday, July 18, which will be a fun "snack potluck." We are hoping that the afternoon provides our members with the chance to talk and to interact with one another in a casual and informal way. We also got our September 12 meeting planned. It might the most productive planning meeting that we have ever had. But, that efficiency did not diminish the gnawing sense of anxiety in the back of my brain. I just need to remember that I will keep doing my best and accept what I cannot complete and celebrate what I can.
In many ways, the toughest part of my day was yet to come. As I was on my way home, my wife called. Thankfully, I was not driving because she definitely needed to talk to me. We were on the phone together for the entire twenty minutes that it took to get me home. Then, we talked for another hour upon my arrival. My wife had an extremely difficult interaction with another parent today. It is even more frustrating because this person was essentially attacking our daughter. While some of what this individual said might be true, the reality is that this person was only looking at the situation from one point of view, not taking any of the possibilities for our daughter into account. Even more remarkable, the other person dismissed comments from my wife about some of the struggles that our daughter has experienced. By the time I got home, my wife was seething. By the time our conversation ended, I had worked my own way through seething and was simply sad and disappointed. I think the great misfortune in all of this is that as a result of one parent being overly aggressive and overly involved, two children may lose a friendship. Hopefully, that will not be the case.
I have no doubt that tomorrow will arrive with its own challenges. I hope that narcolepsy will allow me the energy I need to keep working my way back to an even keel. If not, I will do what I can, take a breath, and work to let go of all of my challenges and disappointments.
Sunday, July 5, 2009
Foolish and Frustrating Fourth
What a difference a day makes! I knew that I would pay a price for staying yesterday (and for not worrying about the energy that I was expending), but I had no idea that level, extent, or immediacy that the payback would affect my entire family. Narcolepsy reared its ugly head and brought along some other friends as soon as my day began today. We all got up slowly because we had gotten home so late. At the same time, I knew that my wife desperately wanted to get us all to Church - we have missed Mass far too often of late. Even though my body had NO interesting in getting going, I was determined to get moving so we could get to Mass.
Our daughter was far less enthusiastic about the prospect of Mass, but she did hope into the shower after my wife's quick shower. Unfortunately, my daughter stayed in the shower until minutes before our agreed upon departure time. My wife, who was rightfully cranky given our late night and the horrid traffic on the way home, let us both know that she was frustrated that we were likely not leaving at the agreed upon time. Hoping to mitigate the situation, I decided to forgo a shower (since there was NO way I could take one and have us leave on time), but I also resented that fact and that my daughter was not being respectful of the time or my wife. Nonetheless, we were ready to go at 9:35 AM which had been the agreement. Unfortunately, I could hear my daughter and my wife still exchanging comments before I even left the house. Since I was already frustrated and upset, their fighting only exacerbated my own angst, but I knew that my wife needed me to stay "upbeat" so I stuffed those emotions too.
My daughter continued to push my wife, even after my wife said the discussion was over. As a result, we had gone now more that a quarter of a mile and were sitting at a stop light. My wife then chose to mutter more negative and general comments under her breathe. I, of course, heard them. I had already been fighting the urge to scold my daughter for her behavior, and the reality is that I had not wanted to go to church in the first place. In fact, I was struggling to understand how we could be on our way to church when we were clearly being extremely UNchristian to each other. Finally, my fury over the fact that we had stayed late because of my daughter (which she had already forgotten) boiled over. Rather than blow up in the car (and make things worse), I got out of the car and said that I was going home. Of course, that action only served to make things worse, particularly for my wife, who was already feeling unsupported and disrespected. By the time I had gone a block and a half, my wife had turned around and had returned to get me. Her tone and behavior told me that she was not going to let me walk home, so I got back in the car.
We were then silent all the way to Mass. My nerves were a tad frayed because my wife's driving was a bit aggressive, but I was also furious because I did not want to be there and because my daughter's behavior had been at the core of much of this, yet she was oblivious to that (as she should be at age twelve). As my wife shut off the car, she asked us to go into the church without her. I said, "No." She then told me she needed the time, and I still declined because, "I am only here because you want me here." The statement was true, but was not fair to my wife. I also realized later that a deeper concern was also behind the response. I was worried both about what my wife might do (she was horribly upset) and what I might say to my daughter.
I have struggled a great deal in the last few years with how to talk to my daughter, particularly when it involves my narcolepsy. She has actually told me, twice, that I use my narcolepsy as an excuse. She, of course, has NO idea how hurtful that comment is, but my mind reels at what might have happened had I gone towards church with my daughter, but without my wife. If I had tried to talk to our daughter about how her behavior (and ours) had led to the fight, particularly the fact that we had stayed so late because our daughter was bent out of shape when we tried to leave at a reasonable time, I know that she would have lashed out at me. Given where I was at, I have no doubt that awful things would have ensued.
Fortunately, Mass was wonderful, as it so often is. Both my wife and I noted that the opening song was all about forgiveness. We did have a long conversation when we got home. At one level, all is forgiven, but the tenor of the conversation also impacted me in another way. Clearly, I hurt my wife today, and she hurt me. We also need to do a better job of helping our daughter understand our expectations of her and of her comments to us. But, we have been trying to do that. My wife and I both know that we need to do "more," but neither of us knows where we will find that "more." Certainly, we will work through our fights and forgive each other and our daughter. That does not change the reality that sitting in the middle of all of this is the narcolepsy. My wife DOES do more of the housework and planning. She is already tapped out by full-time work, ful-time parenting, and full-time partnering. I, too, am doing my best, but I have a chronic condition that limits my abilities. If I put too much into my work, everything else suffers. If I neglect myself, everything else suffers. If I dote on my wife or daughter, everything else suffers. Such is the nature of a chronic condition.
The deepest lesson out of today is to continue to let go. I control little of what happens in my life. Bad days come, sometimes sooner, sometimes later. I knew that having fun yesterday would exact a cost, but I was unprepared to face it when it arrived because I didn't think it would come like this. I need to be more honest with myself and my wife. I should have voiced my concerns about church the moment we got up. Even better though, I should have helped my wife figure out what might or might not happen if we stayed late yesterday. Better still, would have been for all three of us to agree to a plan well before the Fourth of July ever arrived. By doing that, we would have all had clear understandings of how the day would play out. What I con't do is let a day like today cause me to only worry about what might come. I also need to keep pushing myself to enjoy the moment. I think my realization of that is progress in and of itself. I have no doubt that if something like this would have happened even a year ago that I would have sworn that I would never stay out past ten PM. That is, of course, unreasonable and irrational, but it tends to be my baseline reaction to "mistakes." I have made numerous mistakes in the last two days. I need to own them, ask for forgiveness, forgive myself, and appreciate the good things that happened in between my errors. I am not "feeling" that yet, but at least I "know" that it is a far more appropriate response. Hopefully, I will continue to learn as my journey continues with my narcolepsy in tow.
Today, though, that attitude is hard to maintain. I am wiped out in general, and then I got way off my current sleep schedule and spent tremendous amounts of energy wrestling with my thoughts and emotions today. Things will get better, but I feel like I am once again muddling through a Sunday, barely doing anything productive, and wondering how I will find a decent groove to be healthy and mildly productive in my life while not grossly upsetting my wife and daughter on a frequent basis. I deeply dislikes days like this!
Our daughter was far less enthusiastic about the prospect of Mass, but she did hope into the shower after my wife's quick shower. Unfortunately, my daughter stayed in the shower until minutes before our agreed upon departure time. My wife, who was rightfully cranky given our late night and the horrid traffic on the way home, let us both know that she was frustrated that we were likely not leaving at the agreed upon time. Hoping to mitigate the situation, I decided to forgo a shower (since there was NO way I could take one and have us leave on time), but I also resented that fact and that my daughter was not being respectful of the time or my wife. Nonetheless, we were ready to go at 9:35 AM which had been the agreement. Unfortunately, I could hear my daughter and my wife still exchanging comments before I even left the house. Since I was already frustrated and upset, their fighting only exacerbated my own angst, but I knew that my wife needed me to stay "upbeat" so I stuffed those emotions too.
My daughter continued to push my wife, even after my wife said the discussion was over. As a result, we had gone now more that a quarter of a mile and were sitting at a stop light. My wife then chose to mutter more negative and general comments under her breathe. I, of course, heard them. I had already been fighting the urge to scold my daughter for her behavior, and the reality is that I had not wanted to go to church in the first place. In fact, I was struggling to understand how we could be on our way to church when we were clearly being extremely UNchristian to each other. Finally, my fury over the fact that we had stayed late because of my daughter (which she had already forgotten) boiled over. Rather than blow up in the car (and make things worse), I got out of the car and said that I was going home. Of course, that action only served to make things worse, particularly for my wife, who was already feeling unsupported and disrespected. By the time I had gone a block and a half, my wife had turned around and had returned to get me. Her tone and behavior told me that she was not going to let me walk home, so I got back in the car.
We were then silent all the way to Mass. My nerves were a tad frayed because my wife's driving was a bit aggressive, but I was also furious because I did not want to be there and because my daughter's behavior had been at the core of much of this, yet she was oblivious to that (as she should be at age twelve). As my wife shut off the car, she asked us to go into the church without her. I said, "No." She then told me she needed the time, and I still declined because, "I am only here because you want me here." The statement was true, but was not fair to my wife. I also realized later that a deeper concern was also behind the response. I was worried both about what my wife might do (she was horribly upset) and what I might say to my daughter.
I have struggled a great deal in the last few years with how to talk to my daughter, particularly when it involves my narcolepsy. She has actually told me, twice, that I use my narcolepsy as an excuse. She, of course, has NO idea how hurtful that comment is, but my mind reels at what might have happened had I gone towards church with my daughter, but without my wife. If I had tried to talk to our daughter about how her behavior (and ours) had led to the fight, particularly the fact that we had stayed so late because our daughter was bent out of shape when we tried to leave at a reasonable time, I know that she would have lashed out at me. Given where I was at, I have no doubt that awful things would have ensued.
Fortunately, Mass was wonderful, as it so often is. Both my wife and I noted that the opening song was all about forgiveness. We did have a long conversation when we got home. At one level, all is forgiven, but the tenor of the conversation also impacted me in another way. Clearly, I hurt my wife today, and she hurt me. We also need to do a better job of helping our daughter understand our expectations of her and of her comments to us. But, we have been trying to do that. My wife and I both know that we need to do "more," but neither of us knows where we will find that "more." Certainly, we will work through our fights and forgive each other and our daughter. That does not change the reality that sitting in the middle of all of this is the narcolepsy. My wife DOES do more of the housework and planning. She is already tapped out by full-time work, ful-time parenting, and full-time partnering. I, too, am doing my best, but I have a chronic condition that limits my abilities. If I put too much into my work, everything else suffers. If I neglect myself, everything else suffers. If I dote on my wife or daughter, everything else suffers. Such is the nature of a chronic condition.
The deepest lesson out of today is to continue to let go. I control little of what happens in my life. Bad days come, sometimes sooner, sometimes later. I knew that having fun yesterday would exact a cost, but I was unprepared to face it when it arrived because I didn't think it would come like this. I need to be more honest with myself and my wife. I should have voiced my concerns about church the moment we got up. Even better though, I should have helped my wife figure out what might or might not happen if we stayed late yesterday. Better still, would have been for all three of us to agree to a plan well before the Fourth of July ever arrived. By doing that, we would have all had clear understandings of how the day would play out. What I con't do is let a day like today cause me to only worry about what might come. I also need to keep pushing myself to enjoy the moment. I think my realization of that is progress in and of itself. I have no doubt that if something like this would have happened even a year ago that I would have sworn that I would never stay out past ten PM. That is, of course, unreasonable and irrational, but it tends to be my baseline reaction to "mistakes." I have made numerous mistakes in the last two days. I need to own them, ask for forgiveness, forgive myself, and appreciate the good things that happened in between my errors. I am not "feeling" that yet, but at least I "know" that it is a far more appropriate response. Hopefully, I will continue to learn as my journey continues with my narcolepsy in tow.
Today, though, that attitude is hard to maintain. I am wiped out in general, and then I got way off my current sleep schedule and spent tremendous amounts of energy wrestling with my thoughts and emotions today. Things will get better, but I feel like I am once again muddling through a Sunday, barely doing anything productive, and wondering how I will find a decent groove to be healthy and mildly productive in my life while not grossly upsetting my wife and daughter on a frequent basis. I deeply dislikes days like this!
Friday, July 3, 2009
Delightful Date
Occasionally, my wife and I find time to go on a date. Sadly, such an event is frighteningly rare. We did manage to go on a date today, though. It was wonderful! My only frustration is that going out to lunch and seeing a movie wiped me out. Hopefully, we can still have some snuggling and romance tonight. Nonetheless, the chance to let everything else go and to get away with each other was glorious.
Our daughter headed off to a friend's lake cabin today. Thus, we have the house to ourselves. I made the date suggestion last night when we knew that we would be childless for most of today. My wife jumped at the idea immediately. We even handled the dining choice well. Initially, I tried to wrack my brain for some place fun to eat near the theater, but narcolepsy does quite a number on memory and decision-making. As a result, we decided to drive toward the theater and then explore for a place to eat. The town preceding the movie theater is North Saint Paul. We eventually discovered downtown in North Saint Paul. That alone might have been worth the trip. Even though the city is technically an "inner ring suburb," the place felt like the main drag of any out state town in Minnesota. It was wonderful!
We decided to eat at Cindy Jean's. There were a few other choices, but the Legion Hall looked iffy and the bars were not the scene we wanted today. Cindy Jean's was a riot. It has three tables and funky decor. There is a huge flat screen TV and a Wii. In fact, Cindy Jean's apparently hosts regular Wii tournaments. The sandwiches were fantastic, and we thoroughly enjoyed the fun meal that we had there. We did feel bad for the other couple eating there. They had no cash, and Cindy Jean's does not take plastic. Thus, the poor guy went looking for a cash machine. It sounded like he had to pay a bank to cash his check. And, he was gone for 20 minutes.
We then headed for the theater. We saw Sam Mendes' new film Away We Go. It stars Maya Rudolph and John Krasinski, and it is fantastic. My wife had seen some reviews that had raved about the film. It is beautifully shot, and the main characters definitely reminded us of each other. Krasinski and Rudolph work well together, and their characters make an odd, but well-matched couple (which is part of the reason we both identified with them - my wife is definitely the yin to my yang). As much as I enjoyed the film, I think the best part might have been reflecting on the film with my wife as we drove home. Nothing is more thrilling to me than getting a chance to be with my amazing wife.
Perhaps what made this day most special is that Monday (June 29) was our 18th anniversary. We did not have time to celebrate in any meaningful way. We definitely acknowledged the event, but having this sweet and simple date today was a perfect celebration for us (and of us). I adore my wife. She is the rock of our family. She is also the most wonderful, intelligent, gorgeous, exciting, sexy, sweet, gentle, driven, and gifted woman that I have ever met. I am blessed to be her husband. I know that I would not be handling my narcolepsy nearly as well without her constant love and support. Thankfully, our relationship goes stronger and deeper with each passing moment and every passing day.
Our daughter headed off to a friend's lake cabin today. Thus, we have the house to ourselves. I made the date suggestion last night when we knew that we would be childless for most of today. My wife jumped at the idea immediately. We even handled the dining choice well. Initially, I tried to wrack my brain for some place fun to eat near the theater, but narcolepsy does quite a number on memory and decision-making. As a result, we decided to drive toward the theater and then explore for a place to eat. The town preceding the movie theater is North Saint Paul. We eventually discovered downtown in North Saint Paul. That alone might have been worth the trip. Even though the city is technically an "inner ring suburb," the place felt like the main drag of any out state town in Minnesota. It was wonderful!
We decided to eat at Cindy Jean's. There were a few other choices, but the Legion Hall looked iffy and the bars were not the scene we wanted today. Cindy Jean's was a riot. It has three tables and funky decor. There is a huge flat screen TV and a Wii. In fact, Cindy Jean's apparently hosts regular Wii tournaments. The sandwiches were fantastic, and we thoroughly enjoyed the fun meal that we had there. We did feel bad for the other couple eating there. They had no cash, and Cindy Jean's does not take plastic. Thus, the poor guy went looking for a cash machine. It sounded like he had to pay a bank to cash his check. And, he was gone for 20 minutes.
We then headed for the theater. We saw Sam Mendes' new film Away We Go. It stars Maya Rudolph and John Krasinski, and it is fantastic. My wife had seen some reviews that had raved about the film. It is beautifully shot, and the main characters definitely reminded us of each other. Krasinski and Rudolph work well together, and their characters make an odd, but well-matched couple (which is part of the reason we both identified with them - my wife is definitely the yin to my yang). As much as I enjoyed the film, I think the best part might have been reflecting on the film with my wife as we drove home. Nothing is more thrilling to me than getting a chance to be with my amazing wife.
Perhaps what made this day most special is that Monday (June 29) was our 18th anniversary. We did not have time to celebrate in any meaningful way. We definitely acknowledged the event, but having this sweet and simple date today was a perfect celebration for us (and of us). I adore my wife. She is the rock of our family. She is also the most wonderful, intelligent, gorgeous, exciting, sexy, sweet, gentle, driven, and gifted woman that I have ever met. I am blessed to be her husband. I know that I would not be handling my narcolepsy nearly as well without her constant love and support. Thankfully, our relationship goes stronger and deeper with each passing moment and every passing day.
Sunday, June 21, 2009
Sunday Struggles
Today is Father's Day, and yet the only real emotion I have managed is frustrated anger. We went to a Minnesota Twins game last night to see an old friend. The game was good, except that the Twins lost, but we got home late. Because I had food at the game past 8 p.m., I stayed up until 11:15. When I finally took my Xyrem and went to bed, I was overly warm. My wife and I were intimate for a time, but things just were not right. Plus, the Xyrem can make me more than a little goofy. I did finally fall asleep. I even managed to take my second dose last night, although I once again slept through my alarm.
When I awoke, however, my wife was missing. Due to her discomfort, she was sleeping on the futon in our basement. I checked on her and returned to bed. I awoke this morning at 8 a.m. While I had rested, I already felt the stress of the day. I am behind at MITY (my wonderful gifted and talented students are producing at record levels this year), and there is far too much that needs to get done around our house. Unfortunately, between my exhaustion and the Twins game on Saturday, I got nothing done. Thus, I climbed out of bed already wondering how I would get to everything on my mental list.
My wife and daughter eventually got up too. They had planned to play some tennis before the day got warm. When they left, I decided to use the time to get in some exercise. I had only done a tiny amount on Saturday and am feeling worse about my physical condition than I did a week ago when I re-started my exercise. While the exercise went okay, I was trying new yoga poses in the end. Invariably, my wife and daughter arrived back home in the midst of that. My daughter immediately plunked down to "watch" since Wii can become a bit of a spectator sport. Although I was self-conscious, I refrained from saying anything. Then, as I began to attempt the final yoga pose - which I was incapable of performing - my wife also arrived. At she sat down, a chair we have owned for thirteen years suddenly lost a bolt. My wife began to let me know that I need to fix the chair when I got done with my exercising.
Sadly, I snapped at that point. Things only got worse when I realized that the bolt that came loose was in a ridiculously difficult area. It literally took me over 30 minutes to fix this one bolt. AND, when I finally set the chair upright, one of the two washers that HAD been on the bolt, once again fell to the floor. Somehow, I had managed to let that come off in my efforts. Needless to say, that final insult did little to dispel my rotten mood.
Of all of the things that have happened today, I am most upset about losing my cool with my wife. I know that no one was trying to make me feel bad or undermine my day, but I lashed out because I felt like that is exactly what was happening. And, of course, I have allowed the majority of the day to slip away because I have been wallowing. I also exhausted myself between the exercise and the (literal) wrestling with the broken chair.
Days like today are the ones that truly infuriate me in terms of my narcolepsy. Consciously, I know that I am wiped out because I am trying to do too much by teaching these two weeks at MITY. Yet, I still consciously and sub-consciously expect that I should also be able to do "normal" things during the weekend. Our house needs to be cleaned, our finances need updating, our windows need staining, and our office needs organization. Even though I literally can't do even one of these things, I feel like I should be able to do something. Worse, I know that my wife needs me to get to some of these things. The state of our house is weighing on her too. But, I am unable to do it. Thus, I get angry at myself for letting her down too.
Which brings me back to the fact that today is Father's Day. Instead of relaxing and celebrating with my family, I have yelled at the two people I love the most. I have also pouted because the day has not felt at all like "my day." Lastly, I don't even feel like I can make things much better right now because I can barely think straight. My body is tired, and my internal turmoil is paralyzing even the remote chance that I will get anything done - including the massive number of pieces from my students (which will only make me MORE stressed out tomorrow).
I know this day will pass. I know that tomorrow will be okay. I know that MITY will be fine and that the class is good. I know that my wife and daughter still love me. I know that my physical fitness will be what it will be. But, I can't feel it, and I hate that. Days like this are horribly bleak. Yes, I can (and likely will) get at least one thing done, but I won't even enjoy that. More than anything, I just wish in moments like this that nothing was "my responsibilty." I know that is an impossibility, but I feel overwhelmed by the frustration and sadness that I have once again "lost" a day (and a bit of my sanity) to this rotten disease.
When I awoke, however, my wife was missing. Due to her discomfort, she was sleeping on the futon in our basement. I checked on her and returned to bed. I awoke this morning at 8 a.m. While I had rested, I already felt the stress of the day. I am behind at MITY (my wonderful gifted and talented students are producing at record levels this year), and there is far too much that needs to get done around our house. Unfortunately, between my exhaustion and the Twins game on Saturday, I got nothing done. Thus, I climbed out of bed already wondering how I would get to everything on my mental list.
My wife and daughter eventually got up too. They had planned to play some tennis before the day got warm. When they left, I decided to use the time to get in some exercise. I had only done a tiny amount on Saturday and am feeling worse about my physical condition than I did a week ago when I re-started my exercise. While the exercise went okay, I was trying new yoga poses in the end. Invariably, my wife and daughter arrived back home in the midst of that. My daughter immediately plunked down to "watch" since Wii can become a bit of a spectator sport. Although I was self-conscious, I refrained from saying anything. Then, as I began to attempt the final yoga pose - which I was incapable of performing - my wife also arrived. At she sat down, a chair we have owned for thirteen years suddenly lost a bolt. My wife began to let me know that I need to fix the chair when I got done with my exercising.
Sadly, I snapped at that point. Things only got worse when I realized that the bolt that came loose was in a ridiculously difficult area. It literally took me over 30 minutes to fix this one bolt. AND, when I finally set the chair upright, one of the two washers that HAD been on the bolt, once again fell to the floor. Somehow, I had managed to let that come off in my efforts. Needless to say, that final insult did little to dispel my rotten mood.
Of all of the things that have happened today, I am most upset about losing my cool with my wife. I know that no one was trying to make me feel bad or undermine my day, but I lashed out because I felt like that is exactly what was happening. And, of course, I have allowed the majority of the day to slip away because I have been wallowing. I also exhausted myself between the exercise and the (literal) wrestling with the broken chair.
Days like today are the ones that truly infuriate me in terms of my narcolepsy. Consciously, I know that I am wiped out because I am trying to do too much by teaching these two weeks at MITY. Yet, I still consciously and sub-consciously expect that I should also be able to do "normal" things during the weekend. Our house needs to be cleaned, our finances need updating, our windows need staining, and our office needs organization. Even though I literally can't do even one of these things, I feel like I should be able to do something. Worse, I know that my wife needs me to get to some of these things. The state of our house is weighing on her too. But, I am unable to do it. Thus, I get angry at myself for letting her down too.
Which brings me back to the fact that today is Father's Day. Instead of relaxing and celebrating with my family, I have yelled at the two people I love the most. I have also pouted because the day has not felt at all like "my day." Lastly, I don't even feel like I can make things much better right now because I can barely think straight. My body is tired, and my internal turmoil is paralyzing even the remote chance that I will get anything done - including the massive number of pieces from my students (which will only make me MORE stressed out tomorrow).
I know this day will pass. I know that tomorrow will be okay. I know that MITY will be fine and that the class is good. I know that my wife and daughter still love me. I know that my physical fitness will be what it will be. But, I can't feel it, and I hate that. Days like this are horribly bleak. Yes, I can (and likely will) get at least one thing done, but I won't even enjoy that. More than anything, I just wish in moments like this that nothing was "my responsibilty." I know that is an impossibility, but I feel overwhelmed by the frustration and sadness that I have once again "lost" a day (and a bit of my sanity) to this rotten disease.
Thursday, June 11, 2009
Summer Surviving and Blog Blessings
Somehow, my summer has managed to feel as frenetic as the school year did. I spent the first three days of my "vacation" meeting with the other folks who teach the same course that I do. While the work was exhausting, it was also extremely productive. We are making huge strides by mapping our joint curriculum. I thoroughly enjoyed the time that we all spent together, and I have high hopes for the coming year.
I have also been preparing for the creative writing course that I have taught for the past eight summers. As I was mapping my regular academic course, I was also puttering with the syllabus, web site, and lesson plans for this summer course. My co-teacher and I got to spend some time together today. I also got to spend time with one of our former students (and chatted with another) who is now interning with the aspect of the program that enrolls my daughter. I love that this young man is still a part of the Minnesota Institute for Talented Youth, but I also am overjoyed that I will get to see him more frequently over the next two weeks. This year will be the first time in five years when this fellow is NOT in our classroom.
While I thought that I would never experience anything in my "regular" teaching career like MITY, I realized over the past two weeks that my current situation at school IS like MITY. The rigor and creativity are present in both places, and I get to team with marvelous co-worker in both situations. Thus, my excitement for MITY feels different this year. I am still elated that it is here again, but it is not my "salvation" as it has been in the past. I think that is a good sign.
Finally, I need to give a shout out to a fabulous new blog that also discusses narcolepsy. It is actually called Narcolepsy and is written by a person with narcolepsy in Florida. He is close to my age and has a markedly similar approach. He too simply wants to process (for himself and others) what it is like to live with this unnerving, facinating, awkward, and bizarre disease. I do hope that others will check out what he has to say. Best of all, he posts on a fairly regular basis - something I am hoping starts to happen here again (soon).
I have also been preparing for the creative writing course that I have taught for the past eight summers. As I was mapping my regular academic course, I was also puttering with the syllabus, web site, and lesson plans for this summer course. My co-teacher and I got to spend some time together today. I also got to spend time with one of our former students (and chatted with another) who is now interning with the aspect of the program that enrolls my daughter. I love that this young man is still a part of the Minnesota Institute for Talented Youth, but I also am overjoyed that I will get to see him more frequently over the next two weeks. This year will be the first time in five years when this fellow is NOT in our classroom.
While I thought that I would never experience anything in my "regular" teaching career like MITY, I realized over the past two weeks that my current situation at school IS like MITY. The rigor and creativity are present in both places, and I get to team with marvelous co-worker in both situations. Thus, my excitement for MITY feels different this year. I am still elated that it is here again, but it is not my "salvation" as it has been in the past. I think that is a good sign.
Finally, I need to give a shout out to a fabulous new blog that also discusses narcolepsy. It is actually called Narcolepsy and is written by a person with narcolepsy in Florida. He is close to my age and has a markedly similar approach. He too simply wants to process (for himself and others) what it is like to live with this unnerving, facinating, awkward, and bizarre disease. I do hope that others will check out what he has to say. Best of all, he posts on a fairly regular basis - something I am hoping starts to happen here again (soon).
Tuesday, June 2, 2009
Jumping into June
Nothing captures the paradoxical nature of this entire school year better than this statement - Last week was the longest week of my teaching career, and I can't believe that it is already June. How last week's four days seemed to last a month is only made more confusing by the warp speed nature of this school year. I truly feel like my ninth graders just walked in the door. I know that the rapidity of time accelerates as I age, but this seems insane.
Of course, I have vivid memories of the richness of numerous days, so even the ridiculous pace of my life has gained more depth. It thrills me that I am learning to appreciate each moment rather than fretting about what I have left undone or anticipating the voluminous work loads that await me around every corner. Thus, this school year may have only last a split-second, yet I have found entire worlds within the fractional pieces of that split-second.
I am also taken aback by the ability I have found to push hard and to balance that exertion with quiet rest. I have never been this productive, while still respecting my narcolepsy. I definitely need to get better at finding the middle way, but I am neither living in denial about my condition, nor am I surrendering to it. In fact, while I am physically exhausted, I am also brimming with excitement because I will begin planning with colleagues next Monday. Rather than wanting to simply collapse for a week, I feel mentally and emotionally ready to begin processing and creating for the next batch of ninth graders.
Of course, I have vivid memories of the richness of numerous days, so even the ridiculous pace of my life has gained more depth. It thrills me that I am learning to appreciate each moment rather than fretting about what I have left undone or anticipating the voluminous work loads that await me around every corner. Thus, this school year may have only last a split-second, yet I have found entire worlds within the fractional pieces of that split-second.
I am also taken aback by the ability I have found to push hard and to balance that exertion with quiet rest. I have never been this productive, while still respecting my narcolepsy. I definitely need to get better at finding the middle way, but I am neither living in denial about my condition, nor am I surrendering to it. In fact, while I am physically exhausted, I am also brimming with excitement because I will begin planning with colleagues next Monday. Rather than wanting to simply collapse for a week, I feel mentally and emotionally ready to begin processing and creating for the next batch of ninth graders.
Saturday, May 30, 2009
Many MOONS Memories
Today was wonderful (and exhausting). Approximately one year after making it to my first MOONS-MN meeting, I presented my story. I also shared the many online resources that have been such a tremendous help in my journey. I honestly feel like the presentation went extremely well.
Initially, the attendance looked to be low, but by the end of the meeting, the entire room was full. Even better, we had some returning members who had been unable to make the last few meetings. We also had two brand new people. One member informed me that he had been present when the Minnesota Narcolepsy Association was formed in the late seventies. I am super excited to work with him to get others from the earlier group re-connected to this newer version of the Minnesota support group.
I also must confess that I enjoyed sharing my own story with other PWNs. I find such power in speaking about my condition with peers who truly "get it." The many nodding heads throughout the entire presentation definitely affirmed my experiences. Because MOONS, this blog, the Narcolepsy Network, and Facebook are so intertwined in my journey, all of my comments brought floods of memories into my head. I found myself quite emotional as I reflected on my initial experiences with the support group on Facebook. The knowledge that only one year had passed since I first attended a MOONS meeting stunned me.
I have made great connections online, but the core people at MOONS at so dear to me. My head spins trying to remember coping with narcolepsy without having them in my life. Yet, that was the reality for me during the first nine months after my diagnosis. Those months were so dark and difficult, but I survived. That initial meeting inspired me to join Narcolepsy Network and to attend the national conference. While I still know that narcolepsy challenges my patience and limits every single day, I have so much more hope. My online support is part of that, but MOONS itself has done more for me than anything else. I am blessed to know these other persons with narcolepsy.
Initially, the attendance looked to be low, but by the end of the meeting, the entire room was full. Even better, we had some returning members who had been unable to make the last few meetings. We also had two brand new people. One member informed me that he had been present when the Minnesota Narcolepsy Association was formed in the late seventies. I am super excited to work with him to get others from the earlier group re-connected to this newer version of the Minnesota support group.
I also must confess that I enjoyed sharing my own story with other PWNs. I find such power in speaking about my condition with peers who truly "get it." The many nodding heads throughout the entire presentation definitely affirmed my experiences. Because MOONS, this blog, the Narcolepsy Network, and Facebook are so intertwined in my journey, all of my comments brought floods of memories into my head. I found myself quite emotional as I reflected on my initial experiences with the support group on Facebook. The knowledge that only one year had passed since I first attended a MOONS meeting stunned me.
I have made great connections online, but the core people at MOONS at so dear to me. My head spins trying to remember coping with narcolepsy without having them in my life. Yet, that was the reality for me during the first nine months after my diagnosis. Those months were so dark and difficult, but I survived. That initial meeting inspired me to join Narcolepsy Network and to attend the national conference. While I still know that narcolepsy challenges my patience and limits every single day, I have so much more hope. My online support is part of that, but MOONS itself has done more for me than anything else. I am blessed to know these other persons with narcolepsy.
Thursday, May 28, 2009
Sad and Surreal
Somehow, it is still May. Although I have not written for weeks, it feels like it has been a year. While I know that I have managed life, work, home, and health reasonably well, I am frustrated that I have not found time for me. I need to blog. I need to exercise. I need to practice yoga. Thankfully, summer is literally around the corner. My primary personal goal is to set clear patterns for those three things for me.
Even though I have coped with my narcolepsy well, many moments overwhelm me. One happened yesterday. I left home at 7:20 AM, and other than a brief 45 minute stop for dinner, I did not return until 10 PM. In the midst of it, I honestly worried that I would have a sleep attack. Gratefully, everything went well, and I found a second wind.
Today was a radically different situation. Even though I had Monday off, I found myself stunned this morning when I remember that today was Thursday. I honestly felt like Tuesday and Wednesday last for weeks. Yet, today was the longest day yet. Much of the morning went well, but in my afternoon class, I led a discussion during which MANY of my boys attempted to fault a female character in a novel for a rape. I was and am aghast. Although the group has certainly had moments of sheer male stupidity, this horrific scene was completely off my radar.
We are reading Speak by Laurie Halse Anderson. The book is tremendous, and most students can't put it down. The discussion began with some wonderfully insightful comments, but a boy in the class who has often made short-sighted comments then offered that the protagonist was at fault for her rape. Assuming that his peers would immediately reject his comment, I called on two other boys. Both of them agreed with the first. The ensuing discussion entailed young women respectfully and intelligently refuting the lunacy that these boys were spewing, but the boys chose to ignore everything that the young women offered. I know that I handled the situation as well as I could, but I regret that I did not simply reject the initial comments. Unfortunately, I all too often try to be "fair." Since my own biases tend toward feminism, I refrained from shutting down this boy. Hoping that the boys would "learn" from the discussion, I proceeded to allow tremendous pain to be inflicted on the young women in the room.
When class ended the boys strolled out the door without a care in the world. Many of our young women were reeling from the boys' remarks. One broke down immediately. Two others spent 15 minutes in dialogue with my co-teachers and me. Three more wrote lengthy emails upon arriving at home. I highly doubt that the boys even pondered the class period for more than 10 seconds. Thus, in an attempt to "help" the boys, I subjected young women to tremendous pain. That is male privilege in its most sinister forms.
Thus, my co-teachers and I will adjust our schedule for tomorrow. Instead of playing our trivia and knowledge game, we will separate into gender specific groups. Hopefully, the young women can be reaffirmed by the testoterone-free period. The boys, on the other hand, should be interesting. I definitely think that those boys need to hear in no uncertain terms that rape is an evil crime and that a rape is NEVER the fault of the victim. It should be interesting.
Even though I have coped with my narcolepsy well, many moments overwhelm me. One happened yesterday. I left home at 7:20 AM, and other than a brief 45 minute stop for dinner, I did not return until 10 PM. In the midst of it, I honestly worried that I would have a sleep attack. Gratefully, everything went well, and I found a second wind.
Today was a radically different situation. Even though I had Monday off, I found myself stunned this morning when I remember that today was Thursday. I honestly felt like Tuesday and Wednesday last for weeks. Yet, today was the longest day yet. Much of the morning went well, but in my afternoon class, I led a discussion during which MANY of my boys attempted to fault a female character in a novel for a rape. I was and am aghast. Although the group has certainly had moments of sheer male stupidity, this horrific scene was completely off my radar.
We are reading Speak by Laurie Halse Anderson. The book is tremendous, and most students can't put it down. The discussion began with some wonderfully insightful comments, but a boy in the class who has often made short-sighted comments then offered that the protagonist was at fault for her rape. Assuming that his peers would immediately reject his comment, I called on two other boys. Both of them agreed with the first. The ensuing discussion entailed young women respectfully and intelligently refuting the lunacy that these boys were spewing, but the boys chose to ignore everything that the young women offered. I know that I handled the situation as well as I could, but I regret that I did not simply reject the initial comments. Unfortunately, I all too often try to be "fair." Since my own biases tend toward feminism, I refrained from shutting down this boy. Hoping that the boys would "learn" from the discussion, I proceeded to allow tremendous pain to be inflicted on the young women in the room.
When class ended the boys strolled out the door without a care in the world. Many of our young women were reeling from the boys' remarks. One broke down immediately. Two others spent 15 minutes in dialogue with my co-teachers and me. Three more wrote lengthy emails upon arriving at home. I highly doubt that the boys even pondered the class period for more than 10 seconds. Thus, in an attempt to "help" the boys, I subjected young women to tremendous pain. That is male privilege in its most sinister forms.
Thus, my co-teachers and I will adjust our schedule for tomorrow. Instead of playing our trivia and knowledge game, we will separate into gender specific groups. Hopefully, the young women can be reaffirmed by the testoterone-free period. The boys, on the other hand, should be interesting. I definitely think that those boys need to hear in no uncertain terms that rape is an evil crime and that a rape is NEVER the fault of the victim. It should be interesting.
Thursday, April 23, 2009
Wrung out, but Writing
I don't have much energy because it is late, but I have felt the need to write for days. I am stunned how often life's whirlwind can suddenly shift, leaving me writhing in the dust. Even though last week was significantly more taxing, this week has seemed completely out of my control. A week ago, our teaching team was missing one member the entire week, while our students bombarded us with questions about their research papers. My household was also missing our superstar - my amazing wife. Yet, it is this week that feels more insurmountable. I doubt I will ever truly understand that aspect of myself or narcolepsy. This condition seems to have an unending supply of twists and turns.
Regardless, I have survived another week. I have a mountain of work this weekend - correcting and cleaning being the primary tasks at hand. Still, I am proud of myself for pushing through the challenges that continually crop up along the journey. I have had two intense department meetings this week. Two provided fantastic dialogue, but the underlying issues are enormous and get at the spiritual core of teaching. I also believe that another setback has been dealt in the realm of technology. After two years, numerous discussions, a day long listening session, and a full faculty and staff survey, our Technology Committee seemed ready to make a recommendation about modifying the usage rules for iPods/MP3 players and cell phones during the school day. But, during the chair's summary of the meeting (with only 10 minutes remaining) a slew of "issues" were raised - things we have discussed ad nauseum over the past two years - that delayed the process yet again. The ultimate irony is that our committee only makes a recommendation. The administrative team will give whatever we do final approval. Hearing about this situation today once again makes me questions whether this school is the right place for me or for my daughter. I hate that, but it also means that I am taking nothing for granted.
Regardless, I have survived another week. I have a mountain of work this weekend - correcting and cleaning being the primary tasks at hand. Still, I am proud of myself for pushing through the challenges that continually crop up along the journey. I have had two intense department meetings this week. Two provided fantastic dialogue, but the underlying issues are enormous and get at the spiritual core of teaching. I also believe that another setback has been dealt in the realm of technology. After two years, numerous discussions, a day long listening session, and a full faculty and staff survey, our Technology Committee seemed ready to make a recommendation about modifying the usage rules for iPods/MP3 players and cell phones during the school day. But, during the chair's summary of the meeting (with only 10 minutes remaining) a slew of "issues" were raised - things we have discussed ad nauseum over the past two years - that delayed the process yet again. The ultimate irony is that our committee only makes a recommendation. The administrative team will give whatever we do final approval. Hearing about this situation today once again makes me questions whether this school is the right place for me or for my daughter. I hate that, but it also means that I am taking nothing for granted.
Thursday, April 9, 2009
Battling the Blues
Vacations and breaks are good and bad for me. I definitely needed to rest and relax, which this time off is allowing (at least in a small way). The problem, though, is that I continue to feel compelled to do things. When I have free time, my brain continues to race with everything that is un-done. That might sound odd, or even insane, to some, but it is the best way that I can describe what happens inside my head. When I have time to think, the tapes in my head regurgitate each task that I have yet to accomplish. Often, the resulting effect is stressed out paralysis - which does little to relieve the overwhelming anxiety. Needless to say, I know that these irrational thoughts are one of the largest burdens that I will face as my life moves forward.
A portion of this self-defeating trait must be genetic because I know that my mother, my grandmother, my aunt, and my great-grandmother all have (or had) the same types of tendencies. Clearly, it is also learned behavior. Watching all of those women in my life push themselves certainly rubbed off on me. My father also never stops moving, although I remain convinced that his behavior is also a way to cope with undiagnosed sleep issues (quite possibly narcolepsy). The third element, though, is me. I do know ways to cope with these messages, but I tend to let them drift to the wayside as I get busier (and more tired) during the school year. The best way for me to cope with this proclivity for irrational delusions about my work load is yoga and meditation. Closing following those two techniques is exercise. When I am stronger and more balanced mentally, emotionally, and physically, I am better able to fend off and ride out the onslaught of "missed opportunities" that can crash over me when I try to have down time.
Unfortunately, I do let yoga and exercise disappear when I am pressed for time and energy. Both do make me stronger and improve my endurance, but they require time and physical strength too. Rarely do I prioritize my need for them over my wife and daughter, or my job. In this on-going journey of narcolepsy, I need to press my personal agenda. If I do not, it will hurt me, my family, my colleagues, and my students. The reality is that things that make me more complete need to be at the top of my list, rather than in the "if I have time..." category. The truth is that I will NEVER have time for that category.
I find it ironic that even now I am writing this blog post to keep the negative messages at bay. Already this morning I have conceived of more work to do than I could hope to finish in a week. But, because I am run down and still recovering, the messages flood my brain - clean the fish tank, clean the kitchen, clean the office, sort the mail, organize the pictures, re-organize the computer files, get the books moved at school, write up the MLA formatting rules, vacuum the house, change the cat litter, do the laundry, pack for the trip, get the money entered, finish the taxes, and those are just the things that I need to do "today." Typing that list scares me because part of me truly believes that I should do ALL of that today. Then, another voice reminds me that I can't do it because of my narcolepsy and because I am weak. I know that all of that is irrational, but when I am this tired, I struggle to fully accept the irrationality of those ideas. Thus, they feed my depression and anxiety further.
In the end, I simply must embrace this portion of my journey. Playing ultimate (and my long walk on Monday) reminded me that exercise does help me. Slowly, I will find a way to work yoga and exercise back into my routine. Poco a poco, I will make the changes that I can, both to live a more balanced life and to recognize that I can be a person with narcolepsy and still have joy and contentment. Likely, the path will extend to the end of my time, but at least I know I am moving in the proper direction, even if it is one slow, small step at a time.
A portion of this self-defeating trait must be genetic because I know that my mother, my grandmother, my aunt, and my great-grandmother all have (or had) the same types of tendencies. Clearly, it is also learned behavior. Watching all of those women in my life push themselves certainly rubbed off on me. My father also never stops moving, although I remain convinced that his behavior is also a way to cope with undiagnosed sleep issues (quite possibly narcolepsy). The third element, though, is me. I do know ways to cope with these messages, but I tend to let them drift to the wayside as I get busier (and more tired) during the school year. The best way for me to cope with this proclivity for irrational delusions about my work load is yoga and meditation. Closing following those two techniques is exercise. When I am stronger and more balanced mentally, emotionally, and physically, I am better able to fend off and ride out the onslaught of "missed opportunities" that can crash over me when I try to have down time.
Unfortunately, I do let yoga and exercise disappear when I am pressed for time and energy. Both do make me stronger and improve my endurance, but they require time and physical strength too. Rarely do I prioritize my need for them over my wife and daughter, or my job. In this on-going journey of narcolepsy, I need to press my personal agenda. If I do not, it will hurt me, my family, my colleagues, and my students. The reality is that things that make me more complete need to be at the top of my list, rather than in the "if I have time..." category. The truth is that I will NEVER have time for that category.
I find it ironic that even now I am writing this blog post to keep the negative messages at bay. Already this morning I have conceived of more work to do than I could hope to finish in a week. But, because I am run down and still recovering, the messages flood my brain - clean the fish tank, clean the kitchen, clean the office, sort the mail, organize the pictures, re-organize the computer files, get the books moved at school, write up the MLA formatting rules, vacuum the house, change the cat litter, do the laundry, pack for the trip, get the money entered, finish the taxes, and those are just the things that I need to do "today." Typing that list scares me because part of me truly believes that I should do ALL of that today. Then, another voice reminds me that I can't do it because of my narcolepsy and because I am weak. I know that all of that is irrational, but when I am this tired, I struggle to fully accept the irrationality of those ideas. Thus, they feed my depression and anxiety further.
In the end, I simply must embrace this portion of my journey. Playing ultimate (and my long walk on Monday) reminded me that exercise does help me. Slowly, I will find a way to work yoga and exercise back into my routine. Poco a poco, I will make the changes that I can, both to live a more balanced life and to recognize that I can be a person with narcolepsy and still have joy and contentment. Likely, the path will extend to the end of my time, but at least I know I am moving in the proper direction, even if it is one slow, small step at a time.
Saturday, April 4, 2009
Sunny Saturday
While my body is exhausted, I have had a wonderful day. Today was day two of the annual WAFC Fools Fest. We still have not won any games, but we staged a remarkable comeback in our final game. We were down 8 to 1 at the end of the first half, but only lost the game 14 to 10. I even played a couple of key points in the game. We also had a glorious time just being together.
One of the things I love most about ultimate is that so many excellent people play the game. One of our pick-ups is an incredible player and person who goes by School. He plays regularly with some of our Drew Alums, but he fits the team perfectly. While I connected with him yesterday, I had a stellar conversation with him today. It is moments like that which I will miss the most, talking to a quality person while also have a grand time chasing plastic.
The good thing is that I can still play ultimate periodically. Perhaps a pick up game here and there coupled with a few more Fools Fests will tide me over. At the same time, I know that coming to this tournament only underscores why I can't continue to play club ultimate. My narcolepsy does not directly impact me on the field, but the lack of exercise time is a secondary factor. Without the chance to work regular exercise into my limited schedule, I know that my body can take no more than the handful of points that I am playing. That said, I am likely even trying to do too much as it is. In our first game, I played two points in the first half. During the second one, the disc turned over many times. By the end of the point, I struggled to walk off the field. It took me about an hour to recover from that one point. Talk about humbling!
Still, I know that I did the best I could today. I also know that some of my sideline cheering helped others to play with more fire and energy. I do hope that I can find a modest exercise routine, but I also know that the process of establishing it will come with time. Narcolepsy can be so frustrating, but it continues to help me to appreciate patience and grace on a daily basis.
One of the things I love most about ultimate is that so many excellent people play the game. One of our pick-ups is an incredible player and person who goes by School. He plays regularly with some of our Drew Alums, but he fits the team perfectly. While I connected with him yesterday, I had a stellar conversation with him today. It is moments like that which I will miss the most, talking to a quality person while also have a grand time chasing plastic.
The good thing is that I can still play ultimate periodically. Perhaps a pick up game here and there coupled with a few more Fools Fests will tide me over. At the same time, I know that coming to this tournament only underscores why I can't continue to play club ultimate. My narcolepsy does not directly impact me on the field, but the lack of exercise time is a secondary factor. Without the chance to work regular exercise into my limited schedule, I know that my body can take no more than the handful of points that I am playing. That said, I am likely even trying to do too much as it is. In our first game, I played two points in the first half. During the second one, the disc turned over many times. By the end of the point, I struggled to walk off the field. It took me about an hour to recover from that one point. Talk about humbling!
Still, I know that I did the best I could today. I also know that some of my sideline cheering helped others to play with more fire and energy. I do hope that I can find a modest exercise routine, but I also know that the process of establishing it will come with time. Narcolepsy can be so frustrating, but it continues to help me to appreciate patience and grace on a daily basis.
Tuesday, March 31, 2009
Surreal Saturday/Sunday
Surreal is literally the best word that I can conceive to describe the bizarre reality of the past weekend. I arose on Monday morning feeling like it had been 2 weeks since I had been to school, yet it had only been two days. The entire weekend was a constant series of frenzy and activity. My wife and I went on a lovely date on Friday night, after I spent a few hours doing work at school. We also got the oil changed in one of our cars. Then, Saturday included an oil change for the other car, tons of school planning and work, a family dinner, church, and laundry. Finally, Sunday was my daughter's prelims for swimming (she was incredible), a fun lunch with friends, more school work, and house cleaning.
Somehow, I survived it all. I felt spent by Monday morning, but I also knew that I could survive. And, I did. I need to keep striving for balance in my life, but I also realize that the ebb and flow of the universe will not always make balance possible. As a result, I need to embrace times like this weekend, while knowing that I did my best. Sometimes, like this weekend, most things will work out. Other times, nearly everything will fall a part. Regardless, I need to push forward. Perfection is an impossible ideal, and I hope that I will one day be able to say that (or write it) feeling it in my core. I take small steps each day, but the journey will span my life.
Somehow, I survived it all. I felt spent by Monday morning, but I also knew that I could survive. And, I did. I need to keep striving for balance in my life, but I also realize that the ebb and flow of the universe will not always make balance possible. As a result, I need to embrace times like this weekend, while knowing that I did my best. Sometimes, like this weekend, most things will work out. Other times, nearly everything will fall a part. Regardless, I need to push forward. Perfection is an impossible ideal, and I hope that I will one day be able to say that (or write it) feeling it in my core. I take small steps each day, but the journey will span my life.
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