Regularly Random Routine

One thing I know helps me is a set routine. Unfortunately, I do not feel like that has happened since the previous school year ended. I have come to expect that my summers will be all over the place. Because I teach an intensive creative writing course and then we travel, summer tends to be an unending cascade of starts and stops. Since my profession allows me two and a half months of unpaid vacation, I usually handle the rudderless aspect of June, July, and August as well as I can. Usually, though, the arrival of September affords me the blessing of a fairly standard daily schedule. For some reason I have yet to find that rhythm this year.

Certainly, the crazy weekends that took place for my family in September exacerbated the situation, but it goes well beyond that. For the first time that I can remember, I had more of a pattern to my day in August than I do right now. Rather than getting easier, my days seem to be growing in complexity. I have no doubt that much of that is in my head and in my reaction to my narcolepsy. Nonetheless, my days feel much more fragmented. I am weathering them well, partly because I have come to accept the reality that I have a disability. Still, I find my anger and frustration rising to the surface far more often of late. I also know that my depression seems to be growing in strength lately. I also find it difficult to "be hopefully" while also "accepting my realities." As always life and narcolepsy seem to be a paradoxical and oxymoronic as the title of this post!

Wild (weird) Week

I am struggling to believe that I went aq week without posting. Sadly, that is in fact the reality, though. I found myself overwhelmed by meetings and events for most of the past week, and on Friday morning we departed on our trip. The strategic planning meetings on Monday and Tuesday were incredible, but they overwhelmed my body on Wednesday. I did still manage to get some housework and yard work done, though. Unfortunately, that effort coupled with more meetings and errands on Thursday left me FAR behind in my trip preparations. I stumbled out of our office on Thursday night around 11 PM, took one dose of Xyrem, and knew that I would need to get up as early as possible without a second one because I still had far too much to do. It was also the second night in a row with a solo dose.

I did manage to get up between 4:30 and 5 AM, but I still delayed our departure by nearly an hour and a half. Fortunately, my wife and daughter remained calm. I did do some driving (about an hour and a half in the middle of that leg), but it wiped me out. We also got stuck in ridiculous traffic around Chicago. Being the car so long and the fact that I was baking on my side of the car left me with a horrific headache. Fortunately, my wife and daughter still went and enjoyed the dunes on Lake Michigan. Unfortunately, I was unable to awaken for my second dose that night, thus it was three nights with only one dose of Xyrem. The trip from northern Indiana to Tennessee was even longer than Friday's drive. Again, my wife did a bulk of the driving, but I again took a 1.5 hour section in the middle. I was fading badly at the end, and we wound up snapping at each other, but reconciled over lunch. The worst part of the trip came at the end. After 550 miles of driving, we spent nearly two hours covering the final 30 miles because traffic into Pigeon Forge and Gatlinburg, TN is so awful. Again, I was shot and baking.

I did get an okay sleep last night, but am also frustrated because our resort only has ONE internet computer available for guests. At some of their other resorts, they at least make wifi available in the lobby of the clubhouse, but at this one they CHARGE for it! So, I am sitting in the parking lot of a McDonald's using my new Qwest WiFi (available through AT&T). Of course, it took forever to make the connection work right, so I am only going to get a couple of chances to write on my blog. Worse, I truly had hoped to do a little work while I was here. Hopefully, I will work something out. I certainly plan to enjoy our vacation, but this is the first long trip that we have taken with me trying to cope honestly with my narcolepsy. I functioned poorly today (at best). We are going hiking tomorrow and rafting on Tuesday. While I am excited about those activities, I am also worried that I will be unable to do much else. I know that will frustrate my wife and daughter. We will see what tomorrow brings, though. I need to run now. I need to get gas for our car and to get groceries.

Doctor Downer (and difficult decision)

Seven weeks ago, I got a letter from my sleep doctor's office. Bluntly, it told me I better get in to see him, or they would stop filling my prescriptions. I called immediately, and today was the earliest appointment available. Given the tone of the letter, I checked if an appointment today would suffice. The individual assured me that things would be fine, as long as I had this appointment on the books. And, she was right. I got my July prescriptions in the mail, and my Xyrem was renewed without any hassle. Now, I have been wondering what my doctor would say, since I was basically 5 months late in coming into my appointment. Also, given my current state of mind, I was not completely sure what I would hope to discuss with him. I am handling things well, but I certainly would be open to exploring a different med, or looking at how my days tend to ebb and flow.

Invariably, I was ten minutes late to my appointment. A nice physician's assistant brought me back and did the initial intake. I told her that things were about as good as I thought they could be. I did not go into significant detail because I figured that I would have to say things twice. My BP was a tad high 130/90, and my weight still remains far too high. Their scale had me at 198, and I was 195 at home this morning (wearing fewer items of clothing). I did mention that I might want to discuss a different med, but also noted that NuVigil might not be the right direction since I had a terrible time with Provigil. I mentioned the relative success of my two medication holidays. She then left the room to let my doctor know that I was ready.

She then returned less than 5 minutes later. My sleep doctor felt that "as long as things are working, we should not switch meds." He also told her that unless I "needed" to see him, I was free to go. Now, I debated briefly about asking to stay so I could at least see him, but quickly decided that there would be little purpose in doing that. After all, I was still unsure as to what I hoped to discuss with him, and I was late for the appointment. So, I gathered my things and took my leave of the office. In the ultimate irony, the physician's assistant ask ME when I was supposed to return. I informed her that I had stretched my previous six month check-in by five months. I then said six months might make sense. And, as happened the LAST time I was in that office, the receptionist informed me that they do not schedule February appointments now. I need to call in November.

Of course, my PWN brain managed to put off that previous November phone call until I got the stern letter. I also was a tad flabbergasted that after the nature of that correspondence, I was not even SEEN by my doctor. I am sure that the physician's assistant is a sharp young woman, but she is not a specialist licensed to practice sleep medicine. It also does not help my mood that I did have time when she left the room to flip through the clinic's latest newsletter. While they "might" have cover Dr. Mignot's ground-breaking discovery in their Spring newsletter, the Summer one that was in the room had NOTHING about narcolepsy in it. It had lots on obstructive sleep apnea and lots on restless leg syndrome, but nothing about this wacko disease of mine. Of course, the clinic only employs pulmonary doctors, so I should not expect much. Except I do! If a clinic is supposed to treat narcolepsy, shouldn't they know something about it? Now, my doctor is a good guy, and he does know a decent amount about narcolepsy, but I think today is strong indication that I need to find a new doctor/clinic. Unfortunately, there are not other options, at least not good ones. Most other places in the Twin Cities are also pulmonary clinics. The one that is not tends to have a ridiculously narrow view of narcolepsy, meaning that they might actually tell me that I do NOT have narcolepsy. The added complication is that if I go somewhere else, they might be worse and could possible change my drugs in ways that make it impossible for me to work.

Sadly, I don't feel like I have any good choices here. I can stay where I am, continue to figure out on my own (and with my many PWN friends) how to handle this condition, and ensure that I can at least receive drugs that seem to work for me. The downside is that I might not EVER talk to my "doctor" again. And, if I do "need" to see him, will he honestly have genuine suggestions for me? Of course, leaving presents the possibility of finding a great doctor who can help me better understand myself and my disease, but that does not feel likely. In fact, I am honestly more worried that my current options (other than my actual clinic and doctor) would likely do more harm than good. The idea of having to re-tell my story (or even to be re-tested) while possibly being disparaged because my diagnosis is narcolepsy without cataplexy (or possibly mild/abnormal cataplexy which the guidelines still call "without cataplexy"). In fact, if that happened, it might be far more disrupting than just the mental stress. I might lose the meds I have, and if I can't work, I would also likely lose the small chance that I would have of a disability situation (if I don't have "narcolepsy," I have some condition of unknown etiology which would mean in legal terms that people think I am lazy).

Fortunately, I am not freaking out over this, but I do need to ponder a next step. I am not sure where to start. I know that there is an excellent neurologist in Saint Cloud, but have been remiss to try to see him because I doubt that insurance will cover it. And, I have no idea of how I would prove to my insurance company that I can't get proper care in the Twin Cities when many other PWNs "do." I actually know that they don't, but we are such a small population that it is easy to make blanket statements, particularly for large companies. Perhaps I am most frustrated by the fact that this brief stop in my doctor's office has added yet one more level of stress to my already growing anxiety of late. I truly do not have the time or the energy to commit to the process of searching for a new doctor. I also know that I hate the idea of "popping" into this office once or twice a year to simply pretend that my doctor checked on me.

Fading Focus

Summer is always a curve and a blessing for me. I LOVE that I actually have "free time" because I need it to recover from the frenetic pace of my school year. At the same time, I hate it because I am terrible with unstructured time. I have been doing better this summer, but I have struggled for the last two days. My problem is that I lack the self-discipline (or perhaps the energy) to create a modest schedule of tasks for the day. During the school year, I am forced to create some level of schedule because my work fills specific sections of my day. When summer truly arrives for me, though, I have such open swaths of time that I regularly fail to pre-plan what I will be doing on any given day.

I also get terribly gun shy of planning out specific days. I know that I overestimate my energy and abilities, meaning that if I plan out a series of days, I will likely be "behind" from the moment I set my schedule. At the same time, when I allow myself to "see where the day will take me," I find myself accomplishing next to nothing. Because so many things are a "top priority," I am often paralyzed by my own brain. Worse, my inaction causes me to begin berating myself, which makes my more tired, and I become even more inefficient.

As I said, I am getting better at managing these things. In reality, my learning style (concrete random) and my personality type (ENFP) do not lend themselves well to carefully planned out schedules. In fact, they are deadly for me because my "random" nature means that I will eventually fail, and the "concrete" aspect of my brain will condemn me for that failure. Thus, I need broad plans, and I must accept any step towards the completion of those plans as progress. For instance, our finances needed to get up to date. In the past I would have tried to get it completed in one day. Although I did manage to do that from time to time (by locking myself in our office for 8-10 hours), more often, I would get to a semi-acceptable point and then would leave the finances unfinished - possibly missing a bill. This time, I chipped away at the finances over a four day window. I not only got caught up, but I also managed to enter information for my wife, and I figured out some of the stranger issues in our investment numbers. I even got paperwork filed today.

Unfortunately, even successes like that do not completely sink in for me. I consciously know that I did a good job, but I don't truly feel it. Instead, the hypercritical portion of my brain berates me for taking so long. It also reminds me that the office is still a disaster, and the investment numbers are still not fixed. And, pushing those thoughts away (or should I say hearing them and then dismissing them as irrational) takes tremendous amounts of energy, leaving even more run down. As a result, I then spend a few days, like today and yesterday, wallowing a bit and trying to get into some sort of groove with my daily routine.

The other two challenges of summer tie into that last issue. This time off often results in a different series of events every day. I have clearly learned that I am at my best when I can get into a pattern and am able to follow that every day. Sadly, I am convinced that it will be years until such a thing is possible during the summer for me. My wife's job, my daughter's activities, my doctor appointments, and my work issues mean that summer will remain a hodge podge of starts and stops in each and every day. Summer also means a great deal of isolation. While I do get to spend time with my daughter, many of my days involve long stretches of time when I am alone. Although I have come to appreciate some quiet time when I am isolated, the reality is that I am an extreme extrovert. Thus, being by myself drains me. Sometimes, that alone can totally wipe me out. On the other hand, I can be having the worst excessive daytime sleepiness, but come to life as soon as I step in front of a group of people.

As in so many other things, I must be patient as I move forward living with narcolepsy. This condition is insanely bizarre. I can feel almost normal one day and horribly tired the next. Worse, so much of my day (each day) depends on my sleep, yet I have NO control over that. Even when I have been in a great pattern of going to sleep and waking at the same time each day, one thousand and one tiny little things can positively and negatively influence my rest. Thus, I must take a deep breath, do the best I can, and not fret about the highs and lows. I just need to ground myself in the present and stay with each moment.

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!

Midnight Madness

Once again, I am up far later than a PWN should be. Oops! Life continues to surge at a break neck pace, yet I am surviving. My daughter had a horrid cold at the beginning of last week, and I promptly caught it. I came home early from school last Wednesday and immediately got worse. Somehow, I managed to limp through Thursday and Friday, not only getting to school, but also teaching decently. It was stunning to realize that I could feel as bad as I did, but still get to work and perform adequately. I must admit that I felt a bit of pride in being able to do that. Of course, I also questioned my sanity, particularly on Friday when my morning dose of cold medication did not play nicely with my stimulant. The chest pains and racing heart had me a little worried, but I got through it.

This week has been better from a health perspective, but today was difficult personally and professionally. We have been discussing a change to our cell phone policy and our iPod/mp3 player policy for the past two years. March 24 was finally the day of our "listening session" to hear faculty feedback. Needless to say, no one tends to be more biting in their criticism than disgruntled teachers. I facilitated two sessions and felt pummled by the negative feelings of many of my colleagues. I can understand resistence to the ideas proposed, but many people went well beyond that and vented about "technology" in general. It hurt because our committee has put so much time and energy into our work, but also because I personally believe that integrating more technology into the schoolwide curriculum is vital to helping our students prepare for the future that awaits them. To have a number of colleagues disparage that idea saddened me. It also made me question whether my school is the right place for my daughter, or for me.

February Funk Follows January Junk

It is WAY past my bedtime. Somehow, though, I am still awake. For the third night in a row, I am up past midnight. Not good. I am out of sorts and definitely "off." I am heading to bed in a moment, but I wanted to post. Stunningly, January was my worst month ever, in terms of blogging. Fortunately, the rest of my life progressed far better than my pressence here would indicate. I continue to work to reclaim my pre-break balance. I doubt I will ever fully understand how two weeks of vacation can disrupt my routine so thoroughly. That said, I remain grateful for the vacation.

I believe that I am reacquitring some semblence of order and focus. At my acupuncture appointment today, I commented that I have often felt in the past two weeks that the world seems to move at Mach 2 or 3. But, I seem to be confinded to slow motion. While the world rushes past, I find myself marvelling at the insanity of life. Alright, I must sleep NOW. I shall return (far sooner than the month that lapsed between my last post and this one).

Health Habits

It is frighteningly obvious to me that I need to modify what I am doing in my life, particularly when it comes to eating and exercising. When my stimulants were stripping weight out of me, I began eating huge bowls of ice cream simply to prevent weight loss. Of course, when I started taking heart meds (because my stimulants sent my BP sky high), my metabolism also seemed to slow. I don't eat as much ice cream now, but I still eat some. I definitely need to stop doing that. My weight has steadily risen throughout the summer and fall. I can't afford to get any heavier.

I also need to get back into a much better groove when it comes to my diet. I am not eating a lot of gluten, but I have some at least three or four days a week. Beyond knowing that the gluten makes my digestion worse, I am also sure that it exacerbates my sinus issues. I need to buy healthier food and stop using junk food for comfort. I am hoping that by naming this, I will own my commitment to myself.

Beyond the food issues, I need to begin working out. While exercise will certainly help with my weight, even more importantly I will begin gain back some physcial strength. My knees have begun to hurt again. I am also sure that some of my fatigue is a result of my lack of any kind of endurance. My regiment will need to start slowly. I clearly do not want to overexert myself. I remember all too well how sick I got this summer when I pushed to hard. Still, by building muscular strength, I am certain I will gain mental and emotional fortitude. As always, my concern remains time. I hate that each day seems to only provide me limited windows of energy. Yet, that is the reality. Getting healthy is the best thing for me, thus is must become my highest priority. It does not mean that I won't do other things, but it does mean that I have to stop waiting for some free time. There is no free time! If I intend to get in shape, I must give up other things, or simply know that I will not put much energy into my other activities.

My goal is to work out three times between now and next Friday. I also will minimize sweets and go the entire week without eating gluten. I think the goals are realistic, but we will see what my reporting brings next Friday.

Curious Questions

The continued chaos of my life regularly leads me back to pondering what is the right direction for me. I know that I need to stay active. If I don't, I worry that I will be overwhelmed by the anxiety that constantly builds up within my brain. But, I worry that I will drive myself into the ground. Even though I have gotten significantly better at saying "no," I am still too willing to over commit myself. Helping others is deeply important to me, but I need to work on boundaries.

That said, I continue to wonder if teaching is the right place for me. I do love my job, but I also worry constantly that I am not doing enough for my students. Rationally, I know that I am doing good work. Certainly, I am doing the best that I can, but is it enough? Am I providing the instruction that my students deserve? More importantly, I need to examine the impact of those feelings on my psyche. Worrying about what I am doing does not help my mental health. I am proud that I am handling my insecurities well. While I do have dark moments each day, my prevailing mood is upbeat. I do know (and believe) that I am doing the best that I can each day.

Even that knowledge, though, trips me up. If this is the best I can do, and I can't keep up with the minimum expectations of my job, is it responsible or ethical to continue in that profession? I don't have an answer, but the issue is regularly on my mind. I have much to offer my students, but I also need to ensure that they are getting the instruction that they deserve. The realities of all this far exceed my abilities. I truly do not know what is right or wrong, or if an answer even exists. What I do know is that I will continue to do my best. I will find what energy I can and parcel it out as fairly as possible.

Amid it all, I do realize that I must take more for me. I need to exercise. I need to do yoga. I need to have time and space that is mine. How that will fit with teaching, parenting, volunteering and loving, I have no idea. My life will be what it will be. I will breathe and move and sleep and live.

Oddly Outpaced

Few things are wilder in my life than the vagaries of narcolepsy. As I said yesterday, I am sure that I am still paying the price for my two weeks of insanity. Still, I had been feeling that I was handling things decently, given the "crash" I was experiencing. Then I got up today, or perhaps more accurately, I struggled upright today. One would assume that after crashing for five days, my energy would begin to improve. Sadly, one would be frighteningly wrong, at least she or he would be this week.

Somehow, resting and doing little last night made my MORE tired today. My head hurt for much of the day, and I felt rushed and overwhelmed. It didn't help that I kept taking small hits all day - computer mix ups, school assignments not quite ready, students struggling on exams, appointments happening "sooner" than I could arrive, problems arising that I felt the need to address. I was more than spent by the time I got my daughter at 4:30 PM. That is when the day truly started to sour. She felt neglected yesterday in the aftermath of her team's big win, mostly by me. And, no matter what I did or didn't do, her perspective is the one that matters in that situation. I tried to discuss it with her on the way home, but might have made the situation worse. We then had more tense moments at home.

My wife's arrival seemed to exacerbate the situation more. I had already used up even my deepest reserves, and she too felt dismissed by me. We managed to talk through some of the issues, but I still need to fight off my own internal attempts to shame and blame myself. My wife has had a long and busy week, and I am definitely struggling with my disease more than I have in the previous few weeks. Toss in our wonderful, but pre-teen daughter, and the season is ripe for a colossal disaster. Thankfully, we all managed to avert such a tragedy, but the potential always seems to simmer below the surface.

It makes me laugh that the ebb and flow of my condition never comes at opportune times. I think narcolepsy wants to keep me humble. My students are on retreat tomorrow. It will be good to have a day that is still "work," but one which I can use to relax and meet with my team to plan out our next few weeks. The pace of the western world is relentless. I wish that was not the case, but I also know that I can only control my own actions. Thus, I will continue to work on accepting only one or two responsibilities. I just need to learn how to say, "No" on a regular basis.

Stellar Star (Wars)

Thankfully, I felt well enough today to accompany my family to the Star Wars exhibit. It was spectacular. I thought the coolest aspect of the experience was the way it showed real life connections to the science fiction elements of Star Wars and its universe. For the Tatooine and Hoth items, parallel material about horribly hot and cold spots on Earth was woven into the video comments. Even more interesting was the extensive information about robotics and integrating machines and medicine. My daughter also loved her opportunities to build robots and levitating magnetic vehicles. She even got to drive one - it was no Landspeeder or Pod Racer, but it was sit incredible.

Unfortunately, everyone seemed to be dragging by the time we left, though. Initially, we were hoping to go out to lunch, but tempers started to flair. Instead, we headed home for a light lunch. We even threw in Star Wars Episode V: The Empire Strikes Back. It was a blast to wath it after having been at the exhibit. I ran an errand and then tried to work MORE on the tree. Even though it was all down, I needed (and still need) to get rid of all of the branches. I did take care of half the branches. While I did stop, I may still have pushed too hard because I can already feel the cold getting worse. It didn't help that my blood pressure was high when I took it at my pharmacy while waiting for my prescriptions today. Still, I was glad to get something done, especially since my wife is feeling tremendously anxious these days.

As I was finishing up, my wife told me that she, my sister-in-law and my daughter were going to the Ramsey County Humane Society and then a few other spots. I asked if I could go, and it thrilled my wife. While I was tired, I certainly wanted to continue spending time with all three of them. The Humane Society is relatively close to our house, but we don't go too often because we ALL want to bring home something. Since we already have 3 cats, it is NOT a good idea for us to add to the chaos. My daughter also tends to get overly emotional when we say, "no," to yet another animal. Thus, we also stay away to keep the tears to a minimum. Sadly, today was no different. We all loved looking at the cats and dogs (they had a TON of adorable kittens), but my daughter because fixated on bringing home a cat. She then cried in the car all the way to our next stop. To make matters worse, that next stop was specifically to get something she wanted, which the store did not have.

We worked to make the best of everything, but my daughter's mood (along with everyone else's fatigue) continued to sour the evening. We stopped on the way home to get dinner, and when we got home, we put in a movie that my daughter wanted to watch (Stranger than Fiction - which the three adults had watch two days ago and LOVED). My daughter's demeanor did not seem to brighten much. My sister-in-law crashed. Then, I did too (I could also feel my sinuses filling). I headed to bed assuming that my wife and daughter would finish the film, but they stopped it soon after I left. I worried that it was because of me, but they decided to watch the Olympics instead. Soon, they came to the bedroom to watch it (which defeated the purpose of me leaving the other room, but what the heck). The bigger problem, though, was that both of them had become even more foul in their moods. Fortunately, they dozed before things got too ugly.

My fear now is that this lingering anger (and angst) that we all have will carry over into tomorrow. My daughter is clearly in the horrid throes of impending puberty. My wife has way too much going on, and she is worried about me, her work, our house, our daughter, and approximately a thousand other things. Then, there's my stuff. I know right now that I will feel completely drained tomorrow. Yet, I worry that I will have to push myself because my wife will be so worked up. I also dread the possibility that I may need to be the referee for my wife and daughter - since they were both borderline irrational by the time they fell asleep tonight. I know that I don't have the strength for any of that. At the same time, what do I do if I am needed? These are the moments when my narcolepsy drives me insane. I do okay when everything is calm, but how often does that happen? Most of my life is chaos, and this disease simply doesn't afford me the capacity to cope in moments of crisis. Worse, I can go for days "handling" what comes, but one day (or hour) of pushing beyond the pale leaves me devastated for days. How is that fair or manageable? Beyond "fair" for me, how am I supposed to accept the incredible burden that my health leaves on my wife? Isn't she allowed to have down times? Yet, when she does, how am I supposed to step up when I have nothing to give?

Obviously, things will get better. Perhaps everyone will wake up happy tomorrow. I can't spend my life or time worrying about what tomorrow might or might not bring. That is not being mindful of the present. Still, I at least needed to let the thoughts and frustrations out so they wouldn't fester in my mind until morning. I also do need to be aware of the lack of health that is definitely a reality tonight. I need to sleep now. The new day will bring new wonders and challenges. If I am sick, I will rest when I can. If everyone else is insane, I will bring what peace I can. I need to care for them, but I also need to care for me. Balance will come, eventually.

Living Life

One of my primary goals for the next year is to live honestly and openly in the present. I spend so much time worrying about "what's next" that I often miss "what's now." I know that doing my yoga, meditations and breathing exercises will help, but I want to keep my mind firmly grounded in the moment. One of the more ironic aspects of this is that my MITY co-teacher and I have been discussing "mindfulness" with our students for the past two years. As a result I am far better know than I have ever been in the past, but I still create waves of anxiety for myself whenever any "event" is approaching. The definition of "event" can range from stepping back from ultimate to presenting something to a large group, from basic correcting and lesson planning to taking my daughter to play tennis. If that sounds broad (and slightly insane), I would agree.

I know that I am far too focused on "perfection." I tend to want everything to be a masterpiece. That is neither wise, nor possible. I also "know" that and then find myself obsessing over my foolish tendency, which is even more unrewarding. I have gotten better about letting go of my perfectionism, but I also trap myself by trying to "calculate" the time commitment I will need to "finish" any particular event. Rather than simply starting and doing what I can do, I mentally wrestle with the theoretical and complete little to nothing (which often leads to more self-deprecation). I hope to avoid that trap by planning on specific periods of time, rather than thinking about the "end" of my work.

Setting a schedule has always been dangerous for me because (in an effort to "get it right") I tend to become rigid in my schedule. I do fine for a while, but nothing ever goes exactly as planned. Thus, the schedule derails and I give up - why do it if I can do it "properly"? (I am such a black and white thinker!) What I am hoping I can do over the rest of the summer and during this coming school year is to plan blocks of time, rather than specific activities. By carving out the blocks, I can vary my activities. I can also have a set period for me, a set period for my family, a set period for school work, a set period for exercise and yoga.

I know that I need basic structure to my day. Without it, I tend to get "lost" in the onslaught of potential activities. During the school year, I do better because "have to" aspects of my job tend to keep me more focused. Right now, though, I struggle because 10 things need to get done and I can't prioritize them well. I want to set up this schedule so I can quantify times to address some things. Accomplishing them will certainly help my general mood. That, in turn, will bring me more energy. Of course, energy is the root of most of this worry (both rational and irrational). As I have said before, in the past I could simply plow through everything in my path. Now, though, I know that is not realistic, not is it healthy. Thus, I get scared about putting too much of myself into anything, often leaving me cut off from everything.

The idea of this schedule does have balance at the core. By ensuring time for exercise, me and rest, I am creating something much better than "do your school work first, then get to what your family needs, and then in the left over time take care of Mike." Usually, that plan would last for a few weeks. I would initially get the school work and some family things done, but as the school stuff began to pile up, the household items would also disappear. Finally, since I rarely did anything honestly good for me, the entire system would collapse, and I would fritter away tons of time mindlessly watching television (until panic would set in an I would blaze through a number of things - half-assed - wiping out any energy reserves I might have left). I know that being more dedicated to daily time for me will serve everything in my life much more wisely.

Another major reality that I must confront, though, is my desire to "over-correct" everything that I get from my students. I always want to fix everything in a piece of writing. That is not possible (I love writing entries like this - can you spot the theme of your life, Mike? Um, is it constantly trying to do everything when that is neither logical nor physically possible? YES!). Instead, I need to focus narrowly on specific skills, and then I need to hold my students accountable for maintaining those skills. I feel like that is possible during this next school year, and that has me excited. Not only do I have two excellent colleagues to assist me in holding to that, but also we are meeting and planning so much that I will have many things ready before the school year begins. By knowing the skills we want to see in a specific assignment, it will be much easier for me to keep those in mind, rather than trying to "teach" about every writing flaw on every page.

I think it is wonderfully humorous that my post on "living in the moment" has been dominated by thinking about the coming school year. The reality is that I need to ponder these things right now so I can devote the rest of this summer to establishing these healthier patterns. By teaching myself now how to live in the present, the year will be much better. By balancing school planning with exercise and yoga, by recognizing my need for personal time with the need to connect with my family, I will accomplish much more than trying to do it all in each moment of each day. I feel good about setting these boundaries now. I want to be mindful and present in each thing I do. That intentionality will serve me well in every aspect of my life. Doing that will allow me to make my narcolepsy live with me, rather than the converse that I have felt for much of this past year. A friend pointed out my "error" the other day, and I definitely like the inversion significantly more. Now, I will make it a reality.

Alchemical Allusions

My students for this next year are reading Paulo Coelho's The Alchemist as their summer reading. I just finished re-reading it myself and am deeply struck by how appropriate it is to my own journey. Santiago faces inordinate challenges as he pursues his Personal Legend. At the same time, he is constantly reminded that "all the universe conspires in helping...to achieve it" (Coehlo 22). It is a beautiful paradox and underscores for me the mystery of my condition. I know that narcolepsy is one of the largest burdens I have ever faced, yet without it I doubt that I would have even achieved the mental stability I have of late. It is that balance that is allowing me to be an even better teacher and father and friend.

I also love the idea that there is a Language of the World - one that speaks to us all through omens and the natural world. Santiago sees things everywhere simply by being patient and watching. I know that much of my life has been serendipitous. Often, I am making decisions based on intuition and insight rather than logic and facts. I also know that when I trust those deep emotions, I am rewarded with great joy. Far too often, my logical and analytical mind either gets me into trouble or wraps me in so many knots that the tention is unbearable. Perhaps the best example of all is my narcolepsy. When I am teaching (or passionately engaged in conversation) I am rarely aware of my fatigue, but when I am alone with my thoughts (letting my brain process and re-process everything), my exhaustion can be extreme. Coelho does a remarkable job of vividly capturing the realities of how so many of us lose sight of our Personal Legend. How many times have I worried and wondered about my ability to "teach" because the narcolepsy makes me so tired? Yet, I know (in my heart and soul) that NOTHING fills me up like teaching. It IS my Personal Legend.

Of course, I also feel like I am still on the journey to achieve my Personal Legend. I am a good teacher, but I also know that I can be better. I can't be perfect, but I can be more aware of my students' needs. I can also be more focused on how I teach, making tangible progress for each student an achievable goal. One of the keys is to realize my strengths and my weaknesses. Another is to know that I am finite and limited. I can't do everything (let alone do it well), but I can work toward mastering specific skills with a limited group of students. Returning to our Grade 9 curriculum and working part-time are definitely steps in the proper direction.

Perhaps my favorite thing about The Alchemist, though, is that Santiago - who is so adept at understanding omens - still manages to fail on a regular basis. The idea that we (as individuals, groups, societies) can constantly succeed, or win, or whatever, is such a Western fallacy! The reality is that life is a struggle, and we do fall down, and thankfully we can get up again. In fact we rise even faster when we open ourselves to the love of those around us and particularly to the love of our God. It amazes me that The Alchemist manages to be a deeply spiritual (and religious - in my opinion) book without overtly promoting any faith or offending any faith - please realize that I say that as a Catholic Christian and have no idea if the book offends Jews or Muslims or some other faith. As far as I can tell, it is a book about deeply held beliefs that honors a multitude of traditions and gives a true sense of tolerance.

Like Santiago, I have always been drawn to the idea of omens and signs. I do try to watch the world around me to see what it says. I also feel the power of the desert and the ocean. I have spent more time near the ocean than I have in any desert, but both resonate within my core. My favorite novel, Moby Dick (yes, I am actually that dorky), has an amazing line in Chapter 23 - "It is in landlessness alone resides the highest truth." I think Melville felt what Coelho felt. We are most alive when we are cast out into the world. What is safe is wonderful, but risk allows us the chance to become truly alive, to find our Personal Legend. Narcolepsy is my desert/ocean in many ways. Talk about being "unshored," I feel like I am drifting alone much of the time. Yet, within that emptiness, there is power and strength. I can't be who my logical brain tells me I should be, but I can become who I am supposed to be by trusting my heart and my Personal Legend.

And, I did yoga for a second day in a row - yea, me!

Annoyance of Adulthood

Generally, I love being a "grown up." My wife and I have a good income, and we own our home. My age allows me to have a level of authority. Store clerks rarely look askance at my presence in their stores, unlike my younger days when they thought I might be a troublemaker or shoplifter. Certainly, I enjoy the privilege of enfranchisement, and although I don't drink, I like that I can purchase a bottle of wine for my wife or a friend. I even like that being an adult makes me less concerned about the anti-depressants that I take. The bad thing, though, is the feelings of responsibility that seem to accompany this stage of life.

Both my narcolepsy and my age continue to cause me to recognize more limits in my life. The latest came yesterday. I am in the midst of teaching my second class at MITY - The Enemy Gate is Down: The Stories of Ender, Bean & You. The class focuses on the Ender and Bean series of books from Orson Scott Card. I adore the books and LOVE teaching the class. The problem is that I simply don't have the energy to go all day any more. Even more frustrating is that I also need to start planning for my course at my school. Thus, my team has had two meetings already this week. We have a third tonight. I am thrilled and excited to work with them. I know it will be fantastic. I even find these summer meetings incredible. But, between MITY and the evening meetings, I went from 7:30 AM to 9+ PM the first two nights this week. THEN, I worked more on my MITY course. That will be my schedule again tonight.

I know now that teaching this Session B course was a mistake. Again, I love doing it, but I physically can't. Making the decision to only do Session A next year is the "right" one, but I hate it. I get so much out of working in this program, but it is irresponsible of me to do it because as much as I enjoy the work, I know the course could be better and that I am dropping the ball on everything at home and that I have no energy for anything but the course and that I will need a week or two (maybe more to recover). While some of those issues impact others (mostly my wife and daughter), I am more concerned about how much they impact me. Yes, I do wish that I could still function well enough to appreciate the joy of MITY, but I don't. The negative emotions are definitely outweighing the positive.

The bigger (and more immediate) "grown up" negative, though, has been my lack of ultimate. The sport has always been a vital part of my "balance," especially in the summer. Unfortunately, both my Session A and Session B courses and the narcolepsy have prevented me from making any practices for a month. I had hoped the slower pace of my second class would let me get to practice this week, but I realized Wednesday morning that if I did go to practice that night, it would mean FOUR days in a row (counting today) that I would be in high gear from 7:30 AM to 9+ PM. That is not just foolish - it is bordering on dangerous. I dragged my body out of bed this morning even without the physical exercise. My knees have also regressed in the last month because I have been putting literally 95% of my energy into my MITY courses. What little is left, I have tried to give to my wife and daughter. I honestly have no time or strength to do the PT exercises that I learned. Thus, practicing for ultimate becomes dangerous at another level.

All of this lead me to the highly responsible decision to not go to Wednesday practice, and I already told the captains that I would miss next Wednesday too. But, it makes me so sad. I NEED to have ultimate and my team in my life. They are a vital component of my sanity, but my "adultness" knows that at least this year, my commitments must take precedence. I agreed to teach this second class, thus I MUST be here every day. And, I MUST be prepared for it. Also, I MUST meet with my team for the next school year. That is not an option. We all have crazy summers, and the times this week were in the handful of dates that we could meet. There is NO WAY that I am willing to sacrifice that needed time.

So, some of my frustration is a result of things out of my control. Another piece is the result of my own inability to prioritize myself over the needs of others - that is neither good nor bad, it just is. I just wish it didn't hurt so much having to chose between so many things that I care about. One of the worst elements of narcolepsy is that I not only fear that I will have to give up other important things to me, but also that I already have had to give up vital pieces of myself and am well aware that my fear is actually my reality. I have to accept that. In fact, as I wrestled with missing more practice yesterday, the thought again crept into my head that I might have to give up ultimate, at least from a competitive club perspective. Honestly, how can I justify 1 or 2 three hour practices each week and three to five full weekends of time commitment throughout the summer and fall when I can barely do my part-time job and be present for my wife and daughter? I truly don't know. Am I being selfish? Or foolish? Or smart? Is what I get from playing with my team enough to counteract what it costs me in energy and emotional stability when I feel guilty for not doing more for my family?

Being an adult is a good thing, but it comes with a heavy price. So often as a child, I could afford to have my self-interests guide everything I did. I can't do that now. I am married and have a daughter and love my job and have a chronic illness. All of that means that I must prioritize and choose and eliminate. What is important to me? What do I need? Some days, those questions are easy, but often they are extremely hard. And, this awful condition means that I get to keep trying to cutting away at who and what I am. That is the reality. As much as my meds "help," they do not and cannot "cure" this. They make me functional in a limited way. I can still summon tremendous energy in limited windows of time. I can still be an excellent teacher because I feed off others as an extrovert, but pushing well beyond my boundaries costs me. Thus, the burden rests with me to decide what I should and should not do. It can't be any other way, but I also do not have to like it. And, I don't.

Missing Mother Nature

My wife, daughter and I are in northwestern Minnesota, staying with some wonderful friends. Today's plan was to head to Itasca State Park and do some biking. We could not have picked a better day! The sun was beautiful, the temperature stayed in a wonderful range, and the whole group had a fantastic time. Our friends have two boys, one a year older than our daughter and one a year younger. They all get along well, and today all of them held their own biking for close to six miles. Add to that the decent hills we all had to climb at times, and I admit that they impressed me. We made a great stop for lunch at Douglas Lodge, a beautiful historical site in the park. I HIGHLY recommend the Wild Rice Salad - it was delicious. We then biked the nearly six miles back, let the kids swim and even watch the children (and my wife) build a wonderful sand castle.

The entire day has served as a reminder to me that I need to get outside more. So often, I cut myself off from everything as a result of the narcolepsy. Fearing that I will push too hard or that I will wear myself out quickly, I avoid doing "extra" things. I LOVE hiking and biking through beautiful parks, yet I rarely do that any more. Certainly, some of that is the result of making other choices, which I often enjoy, but I do turn down plenty of chances simply because I am afraid. I definitely know that I don't like explaining how the narcolepsy tires me. I also dislike the feeling that I am a burden to others because I get so wiped out. Rather than risk those things, I often look for ways to back out (or simply decline the invitation in the first place).

In fact, I almost did it today. Some small part of me wanted to just stay at our friends' home while everyone else went biking. Fortunately, that voice was tiny. What was not minuscule was the voice screaming at me when something went wrong with my bike upon our arrival at the park. The stem of my rear tire ripped out. Worse, it was likely my fault. My wife was trying to inflate the tire and I am positive I told her the wrong way to do it. Nonetheless, my entire rear tire was flat and beyond repair. My immediate reaction was to bail on the ride. I honestly told everyone to go. Our friends then let us know that there was a bike rental and repair place at the next stop on the park drive. I did convince everyone to get started and told them that I would deal with the tire and go from there.

Yes, part of me still wanted to scrap the whole thing, but I mustered my courage and drove to the bike place. It was even closer than they thought. I still felt horribly sheepish, because I needed help (yes, I know that is foolish, but I am who I am). As I turned to look for a parking spot, I noticed that everyone else was waiting at the bike shop. I was furious, mostly because I was already dealing with it, but also because I still didn't want to be a burden. I eventually found parking and figured they had headed out. As I carried my bike toward the shop, I saw my daughter and wife and nearly melted down. I figured they had decided to wait for me and sent our friends ahead. The pressure of the entire situation came close to consuming me.

My interaction with my wife was more than tense and all due to me. It turns out the husband, when he realized that the bike shop was so close, figured he could get back to fix the tire before I left the other lot. I tried to apologize to my wife, but we both needed time (I did approach her a few more times throughout the day and all is well). The husband soon returned from his jaunt to the other lot. While my ego and energy were in tatters, I did accept the help. He fixed it in a matter of minutes. Then, we all set off for our excellent day.

While I certainly wish that none of the problems had happened, I am also grateful that they did. I need to learn how to accept help. I need to let others do things for me. Beyond that, I must recognize that sending everyone else ahead without me is not being brave and thoughtful. It is being selfish and cowardly. My family and our friends would have been worried about me and certainly would have missed me the entire time. By letting our friend help me, I allowed this excellent day to happen. If I had been wise enough to do it immediately, my wife and I would not have need me to apologize repeatedly. I do hope that old dogs can learn new tricks because I honestly want to do that. The best thing in all of this is that I not only opened myself to help, I remained open to enjoying the day. Certainly, I am tired and the narcolepsy crept in a times during the ride and the lunch, but I would have deeply regreted missing this day.

Balanced and Blah

So, I had a productive day - sort of. I mowed the lawn, watered everything, got more dishes done, prepped a bunch for my next MITY class, spent time with my daughter and even got the bike rack on our car for the trip tomorrow. I also managed to rest, a few different times during the day. On the whole, the day certainly was as close as I could ask to being a good day. Yet, I felt out of sorts throughout it.

I don't want to analyze why I felt that way. I know, rationally and logically, that today went well. I also know that my sub-conscious mind and other deeper parts of my psyche are still not open to accepting a day like today as great, or even good. that reality certainly won't change tonight, or tomorrow, or probably even next week (or month for that matter). I do know that I need to acknowledge the feelings. I am trying not to be frustrated about my reaction to the day. It is what it is. Getting mad at myself won't change that, nor would it do me any good to pretend like the day was wonderful from an emotional standpoint.

What I hope is that by writing this blog, I can own the day - all of it. I achieved much. I would like to praise myself for that - and mean it. For whatever reason I can cognitively recognize the "good" in my efforts, but I can't open myself to joy such activities should engender. Rather than rage about my inadequacies, I simply want to acknowledge my sadness about this. By sharing the situation I think that I will eventually be more at peace with my narcolepsy and the ways that it is changing my life. We will see.

Learning Lessons, Living Life

I am limited. I can't do nearly what I think I can, and that is okay. I need to make HUGE signs with that message on it. Then I need to post them - in my office, in my car (although not on the windshield), in my classroom, in my heart. Accepting the reality of narcolepsy remains one of my largest struggles. Today, I did more correcting than I can ever remember doing in a single day of MITY. More impressively, I did that after waking up completely exhausted. Major victory, right? Apparently it is everywhere but my brain.

By the end of class today, my sixth full day in a row (a new record since the diagnosis), all I could recognize was that I was further behind in terms of comments than when I had started the day. How could that be possible after my most productive day ever? Twenty-seven brilliant teens don't just chill in week two. They write more! Somehow, I thought I could come home and get more work done. I didn't, at least not right away. I did edit a fee more things tonight. But, now it is technically tomorrow (Tuesday). I will sleep soon, hoping to get more done during class. Still, the reality is that I can't do this - not the way I want to do it.

Fortunately, I am well aware that I am giving what I can. I also know that our students are having a wonderful time in class. I need to internalize that more, so I berate myself less. Sadly, such things are easily said, but far from easily done. Coming to terms with all of this will be the journey of my life - it is the reason for this blog. I may not like it, but I can never change it. Thus, I look for the joy and ride out the pain.

I do need to make wiser decisions, though. It finally struck me this morning that trying to team-teach a full time class for two weeks is a massive strain on me, but trying to do another one solo (even for six students) is insane! I will do a good job and survive Session B, but something miraculous will have to take place for me to do it again next year. As much as I love MITY, I need to think about things in broader terms. My year long teaching exhausts me. MITY recharges me in some ways, but it also pushes me even harder - especially our Session A class. I don't want to let down co-teacher, but even more so I can stand the idea of disappointing these amazing young women and men. It was hard to articulate, even to myself today, but this is likely my final year for Session B. While that makes me sad, I know it is right.

This disease is hard. It continues to challenge every aspect of my life. Forcing me to examine my priorities, narcolepsy also helps me to sort through the chaos of reality. Rarely have I had to make definitive choices in my life. That has put me in an elite minority of privileged people for years. That is no longer the case, but it means that my true character has a chance to shine. I can rise to the occasion by doing what my body allows, or I can become bitter and petulant railing against a condition that I can't control. I definitely hope for the former, but know that the latter is also possible. I firmly believe that God gives us no more than we can handle, but I often wonder if I am wise enough to let God help me find the strength for this. Fortunately, I keep getting better at looking for help. Let's hope that trend continues.

Deeply Disappointed

More than anything else in my teaching career, I adore working at my summer job - the Minnesota Institute for Talented Youth. I teach in their Expand Your Mind program. The entire program is amazing. Gifted and talented youth from all over Minnesota (and other states and other countries!) come together for incredible two week courses. Not only are the students brilliant and wise beyond their years, but they also simply have a good time learning. Whether it is a class in chemistry or mathematics, acting or architecture, these young women and men plunge into the material and have a blast learning.

I have been lucky enough to now be teaching my eighth Session A course. Better yet, I get to do it with a dear friend. We literally lucked into the course and have become veterans of the program. Our course is a creative writing workshop that always attracts a huge group of students. In fact we have our largest roster ever this year - 27 students. I always get excited teaching, but when I have a room full of hunger learners, I am in heaven. I honestly enjoy MITY (the acronym is pronounce "mighty" and we abuse it as an adjective) more than anything else that I get to do in my teaching career.

The problem, though, is that my passion for MITY causes me to raise my personal expectations, particularly for me. These students are ultra-intelligent and deserve the utmost effort from their teachers. While I usually worry that I am not giving them enough, I feel like I am truly not delivering what they deserve this year. The day runs from 8:30 AM to 4 PM. That is longer than a full day at my regular job, plus we don't really take a "break" during the day. Since I nearly collapsed after three full days of teaching during the school year, I am not sure how I am still functioning at all after three days of MITY. Granted, I have not done much during the hour and a half that we have for lunch and Rec Time (something I usually throw myself into, which also is causing me guilt this year), but I have essentially worked on class stuff the entire time.

Some of my current angst started well before the class began. I tend to over prepare for everything, and thus NEVER feel ready for anything. This year, though, my co-teacher and I literally worked together for two hours on course materials. We both did work separately, but on the whole we barely scratched the surface of our previous efforts. Now, we both know the material and the course extremely well, but I would guess neither of us is as comfortable with our daily schedule as we have been in the past. The other major issue is that we are in a new classroom after using the same room for the previous seven years. One would think that a room would make almost no difference, but we went from a gigantic room to one that is (at best) one third the size of our old room. We do have a second room for breaking out during editing and writing time, but it is not the same. I also know it is impacting our students. Usually they are spread out all over the place. Now, they are literally on top of each other. Everything just feels off.

In the end, though, my frustration boils down to narcolepsy once again stealing something I love. I am afraid to get wildly insane like I have in the past. I can't afford to get crazy because I will pay for pouring out too much energy. Driving myself at all costs me, but pushing well beyond my limits borders on the dangerous, particularly when I try to do it for two weeks straight. While I know that and realize that, I am daily confronting a room of students who desperately deserve an instructor who is willing to lay it all on the line. Thus, I feel like I am letting them down, and I feel like I am trying harder than I should. Bottom line, I am doomed on both ends, and narcolepsy once again is at the core of my angst. I hate that!!!!!!

The class is going well - I know that. Unfortunately, I want and expect better than "well." I worry that it won't reach the magic level it has in the past seven years. I worry that these students won't feel the connections and joy that I have seen MITY (and this course) bring in every other year. My co-teacher and I are both "off" in terms of our lives. I know my narcolepsy is causing me to struggle in ways I have not experienced before at MITY. I don't know what my co-teacher would say, but my gut says he would likely agree in terms of his own issues. I think that I am the luckiest man in the world getting to teach this course to these students with such a wonderful educator and friend, but all of those positives make me see the negatives with frightening clarity this year.

I keep working to stay in every moment. I can't control much of what happens in my life. I certainly have power over my reaction to those events, but even that is mitigated by my narcolepsy. Unbearable fatigue does make calm patience an easy thing to achieve, especially when working with high energy, hyper-intelligent teens. I have to be accepting of the realities of my life. Narcolepsy prevents me from doing everything that I would like to do. It impacts my teaching - regularly and often. That situation doesn't change simply because MITY is more fun and better than any other teaching gig. While I hate that, I can't change it. I just don't know if I can accept it. And, if I can't, I worry about my personal anxiety when the class ends next Friday because there is no question that I will fall short of what I believe I should be doing for these students.

Just Another Wacky Day

I had thought my next blog would be about the amazing experience of being in my men's group. I also considered a blog entry on the importance of therapy. A third topic choice was the vitality of friendship and its importance in my life. Nowhere in my planned list of entries was "completely insane day centered on your wife's health issues." And yet, here we are!

My wife is amazing. She truly stuns me on a daily basis. Not only does she manage to love me unconditionally, even with the gloom of narcolepsy hanging over me, but also she daily proves that nothing rivals the affection of a mother for her child. Our daughter goes non-stop and taxes both my and my wife's reserves. Since I don't have much, my wife bears the brunt of the parenting, and virtually every other home life responsibility. Rather than becoming feed up with our child, my wife's enthusiasm for our not so little girl grows with each challenge and demand. It is astounding.

Beyond that, the love of my life is also a phenomenal editor and writer. Her work at the University of Minnesota Medical School has already garnered her a tremendous reputation. Recently, she facilitated a four session workshop on grant writing. Every week she had 50 doctors and researchers engaged for an hour and a half - about writing! She is even better one-on-one and rarely does someone walk away dissatisfied from working with her. Her professionalism and dedication are the stuff of legend among her peers.

Given all of that, it is unbelievable that we spent the afternoon running around dealing with her health issues rather than mine. She is the strong one; I am the ill one. Yet, she has been struggling for weeks with fatigue and stress issues. We have even discussed the possibility that she might have a sleep disorder. Talk about irony! Today, though, went well beyond speculation. Periodically, my wife has had severe abdominal pain. The working theory has been that she experiences ovarian cysts in those episodes. She had a situation last week and even got to discuss it with her other concerns during an appointment with her nurse practitioner. They did a number of tests, and many have already come back normal.

Then, today, my wife called me right before Noon. I was in the middle of class and could not call her until the class ended. When we finally had the chance to talk, she told me that she was experiencing the pain again and was unsure if she could drive. She did manage to get home. I then headed home to get her and brought her to her clinic. After getting our daughter at school and canceling my own appointment, we returned to the clinic to find my wife still waiting and in pain. She finally headed back and was there for an hour. An X-Ray showed nothing significant, and my wife got some Mira-lax in hopes that would help. We still needed to get her to the hospital, though, for a pelvic ultrasound. We don't have those results yet, but my wife is convinced they will be normal too.

She headed to bed as soon as we got home. I must admit that I am scared. My wife's dad has had some major health issues - surviving colon cancer, sleep apnea, type II diabetes. At one level I am sure that she is fine, but it also frightens me that someone as tough and driven as my wife could be incapacitated in this way. The reality is that NOTHING has ever slowed her down when she needs to get things done. But, whatever this is, it has stopped her in her tracks. It is also eating at her that she feels so limited. The quirk is that she keeps checking with me to make sure that I don't think she is being lazy. It is almost laughable that she would feel that way. For seven years, I have barely been able to function due to mysterious and strange health issues, yet she worries that I will think she is weak after a day of pain. Of course, I am complete empathy. Unknown medical problems are horribly frustrating. My own issues have (and sometimes still do) driven me bonkers. Given the way our culture treats illness, it is no wonder that most of us beat ourselves up for getting sick. Being a drain is bad, thus we must be bad if we are sick. How warped is that thinking? Yet, we all do it.

I desperately hope that nothing is seriously wrong with my wife. I don't know how we will weather the reality of two limited adults in this house. But, if something is deeply wrong, I honestly hope we can find it soon so my wife does not have to face the medical nightmare that I experienced, moving from specialist to specialist, never getting a clear answer. The most irrational moments that I have are the ones where I convince myself that I have somehow given my wife this illness. So many of her symptoms mirror my early ones. Of course, that could just be me making myself the center of attention, rather than providing my wife the attention and care that she deserves. Please keep her and our whole family in your thoughts. Thanks!

Confusion

I often wonder how life can seem starkly clear one moment and murkily obscure the next. I had a clear vision yesterday. I knew exactly what I wanted to do - get my prescriptions, do some grocery shopping, clean the office, exercise my knee, correct some papers, go to church, relax in the evening. Somehow, the whole thing imploded. I did what was vital - got pill and food. I did what I needed most - went to church and prayed. Everything else disappeared into the miasma of my mind. I know I still expect too much, but I wish I could find the middle ground. Trying to run multiple errands is always a disaster. I need to recognize that. Yet, I hate the idea of making repeated trips in my car; that's wasteful and foolish, unless you have narcolepsy.

Today has not gone much better. I accomplished a few things around the house, but I feel compelled to do more. And, I can't. I took my daughter and her friend to the spring musical. It was wonderful, but it drained me. Sitting in a theater, watching students I love perform (some for the last time), devoured vast quantities of what I had to give today. It didn't help that my daughter is sick. She needed comfort from me, and I couldn't do it. We did go get another mouse after the show. That lifted her spirits some, but I also expended what remained of my reserve. I had planned to stop and get food for us on the way home, but decided against it. I feared that one more stop would endanger my ability to drive safely. How ridiculous is that? Washing dishes, going to a musical, buying a mouse, and dropping off a friend sapped me dry. I honestly questioned how safe I would be driving if I did one more thing. Clearly, we got home without a problem, but I barely managed two or three sentences of conversation with my wife.

Narcolepsy is insidious. It lurks on the fringe, slowly stalking you. Half the time, it wears you down with stress. You worry about when the pull will get pulled to the extent that you near get to enjoy what energy you have. The other half is worse, at least for me. At those times, narcolepsy moves cat-like in a blinding blur, leveling you. I actually feel like someone cut my power cord. In the face of that, how in the world am I supposed to figure out my limits? The proper answer is, "take life one day, or even one moment, at a time." Sounds good, but rings far more hollow in practice. I find my condition difficult to believe, how could I expect someone else to grasp it? I don't like to be pessimistic about my condition, and I desperately try to avoid holding a pity party for myself. Still, the frequency of inconsistency in this narcoleptic nightmare is truly maddening. I would love even a three day stretch in which each day vaguely resembled the other two.

I doubt I am going to get that, at least anytime soon. Part of the problem is that our home life is tumultuous. All three of us have a variety of commitments and activities. My wife is working constantly these days. She is incredible at what she does, but that also puts her in high demand. My daughter's world is not overly complex, but she is involved in a number of activities and extra school work comes with a few of them. While my schedule is the least demanding, it is also the most transient. Amid special school schedules, doctor visits, physical therapy and my own quirks, I rarely do the same thing at the same time any day of the week - even when I have no responsibilities for my wife or daughter. The next level complicating matters is my anxiety. I remain convinced that I have obligations to everyone I meet. Cognitively, I realize how foolish that is. Unfortunately, that drive (and the resultant shame/anxiety) comes from depth within my core. It is NOT rational, and that is the problem. If those emotions had any grounding in rational thought, I would have figured all of this out ages ago. Finally, the entire experience continues to cause me to react like I am here. When I have a day like today, I ponder it for hours, looking for the solution that will prevent the next one. The problem is that my overthinking IS the issue. I live in my brain far too much. I would get much further, and farther, if I would just "be" with days like today.

Letting the day come to me sounds frightening, but it a change I must embrace. The confusion and chaos I fear is the perfect counterweight to my analytical mind. I just need to accept that. While such an idea flies in the face of everything I have believed, I know in my heart that I must open myself to it. Growth comes through risk. I continue to describe the road ahead as long. Today, it looks infinite. All I need to do, though, is take one step, then follow it with another. I find such strength - frightening as this path seems to be - knowing that many other narcoleptics walk it with me. And, each of us has an army of friends supporting the trip, every inch of it.