Planning for an Uncertain Future

little-is-big

Hello on another Sunday morning from the Fog and Flame,

Technically, it is a few minutes after noon, but I have been here for a couple of hours working on things to prepare for the coming week and my classes; it seems to be my weekly pattern (including listening to Pandora – I know some say I should switch to Spotify, but I am a creature of habit – and I am listening to various Broadway show soundtracks). Amazing how much I have learned about Broadway since coming to Bloomsburg. I am fortunate to have worked with the BU Business LLC for that last 6 years; it has exposed me to many things I did not know. Continuing with the idea of where have four decades gone, growing up, this was the day we had a vacation from school because it was Lincoln’s birthday. It was also my Great-aunt Martha Hannestad’s birthday. She was born in Norway and immigrated to this country as a young girl. She was born in 1877. She turned 100 the day my elder brother was buried, and I remember her saying she should have been the one to be leaving the world instead of a 26 year old father of three. What I know looking back at this time was it was my first real “adult” lesson in realizing or accepting an uncertain future. I did not realize that at the time. As noted in my previous post, I was merely overwhelmed and angry at God.

What I know now, and I am well aware of this simple reality for all of us, I was born with an uncertain future. Undoubtedly, we all have an element of this, but being born weighing 17 ounces and only 26 weeks of gestation in the mid 1950s created another level to this human unpredictability. After 5 1/2 hours of surgery in 2004, the surgeon noted that I had probably been born with Crohn’s Disease rather than having developed it later in life. This was because of symptoms that I had a propensity for as a child. At the time, and I remember some of these painful incidences well, I merely lived through them not realizing (nor did my parents) there was something much more sinister amiss. I am trying to remember a time in my life when I was asymptomatic for Crohn’s and perhaps in my early 20s and when I was first at Dana. Now, however, since fighting this disease in conscious way (circa 1984), I do not really remember having a “normal life” in terms of my health. Some of you who know me in more completely personal manner are probably smiling and questioning any normalcy in my life. Fair enough. For some time the larger question for me has been simple enough. What are the consequences of this abnormal birth weight or gestation? What are the long-term consequences of nine abdominal surgeries and the removal of significant portions of an intestinal tract? Too often (myself included), we see this digestive tract as simply a tube that takes in food, processes it, and expels what is unneeded. It is so much more complex. It is a fundamental part of our immune system.  The surface area of the digestive tract is estimated to be about 32 square meters, or about half a badminton court. With such a large exposure (more than three times larger than the exposed area of our skin), these immune components function to prevent pathogens from entering the blood and lymph circulatory systems.  Fundamental components of this protection are provided by the intestinal mucosal barrier, which is composed of physical, biochemical, and immune elements elaborated by the intestinal mucosa. Microorganisms also are kept at bay by an extensive immune system comprising the gut-associated-lymphoid tissue (GALT) (I owe this previous couple sentences to Wikipedia). After doing more reading, it is not surprising to me, I seem to susceptible to every damn germ that comes my way. This now partial digestive system is fighting the best it can, but between its precarious beginning and what has happened since, I am pretty blessed to do as well as I have. Things were uncertain from the outset, much more parlous than I ever knew. What is much more staggering to realize is how resilient the body is and how my particular body has managed in spite of this malady than I could have ever imagined. While it seems that most of us understand the importance of hydration, what happens when your body does not know how to manage hydration because the main component in hydration no longer exists? The conversation with the gastroenterologist this past week was telling. No real surprises, but facing the reality of the consequences means coming to terms with that uncertain reality once again. Most of the time, I do not focus upon it, but some of the long-term reality and its affects on my daily life have made that more difficult.

What I know most importantly is I have been blessed to live the life I have. I have been so fortunate to meet tremendously talented and good people. I have been able to learn so much about the world in which we live. I have been able to sit at the feet of amazing professors from undergraduate school through a doctoral degree. I have been blessed by phenomenal students in my classes. I have been favored by the presence of terrifically caring people (thinking of so many wonderful people at Comforts of Home); I have been able to travel and meet exceptional people from California to New York, from Texas to the Canadian border. From 1980 to now, I have been fortunate enough to travel to Europe, including East Germany in 1985, more times than I might have ever imagined. Those journeys have always changed my life, from language acquisition to an appreciation for this world in which we live. From food to simple customs, each time there has been a transmogrification from a sheltered NW Iowa boy I once was to someone who has learned things beyond my wildest imagination. As I have noted in many of my earlier posts, the upbringing I had in Sioux City was a typical childhood for someone in the 1960s. We thought life was about playing in the yard, riding our bicycles, coming home when the streetlights came on, going to school and church daily and weekly. And so it was. In spite of things I have written in the past, I was fortunate to grow up in the world I did. I see that as I ponder a world today where so many people in this country are unsure of today, let alone a future. It hurts me as that white person that the country I call home seems so afraid of those who do not look like me or believe in the same God as I do. This is not the world or country in which I believed I was raised. There have been times during the past couple years where I am afraid to read the news, fearing what the newest craziness might be lurking on the daily headlines, but I do not think I am alone in this concern. While it would certainly be easy to point fingers in the current atmosphere, I do not want to do so. As most unmistakably know, I have a certain political bent,  but it is more complex than many might realize. My niece, whom I adore, stated it quite well today. She voted in the past election because she is not a conservative Republican and note, I leave that to interpretation. Fiscally I am more conservative than many might think, and while I am more socially liberal than my fiscal-nature, I might not be as liberal as everyone might assume by my academic profession. What does that mean? It is another example of how I have never been able to be easily compartmentalized. It is because I ponder and try to think beyond the obvious. I do fall into the easily categorized at moments, but that is generally when I am overly frustrated and write or speak before I think as carefully as I should. Sucks to be human at moments.

The next weeks will hopefully allow me some more certainly. While I thought I had every imaginable test done to my altered GI tract, there is the possibility of a new one, encapsulated cartography. What is this you ask? It is actually swallowing a camera and allowing it to take pictures (or is it movies) of my entire (or partial) gastroenterological system. I am not sure this will happen because it is dependent of the endoscopy and ileoscopy that is scheduled soon. I read an article in Journal of Clinical Gastroenterology titled “Crohns (sic) Cartography: Mapping Disease Patterns and Trajectories Using the Lémann Index; Are We Finding our Way?” If you are so inclined you are welcome to read it. If you find it a bit much, it is using a camera to see what sort of patterns they might discover after my three-plus fight with Crohn’s  after examining my insides. It seems like science fiction on one level, but it is actual medical care in this 21st century. That is the thing. If I had been like this even a few decades earlier, most likely I would not be composing a blog in my 60s. The intestinal issues are both at the crux of my concern, but on another level, the easiest to manage. I have been managing the consequences of Crohn’s as an intestinal companion for over 30 years. It is the next level of symptoms that seem to be more problematic (as well as increasing the morbidity). Up to now dehydration has been a inconvenience, but now it has added to the uncertainty that has been another companion. Ostomy moments are one thing to manage. Headaches that create a lack of hearing, an absence of sight, and a complete lost of equilibrium are an entirely different issue, and both a figurative and literal severe pain. Hearing that the consequence of this dehydration are now apparent in my brain matter serves as yet another disconcerting consequence. One of the things I have been able to do, at least until now, is merely live with the consequences and see them as a part of my life to manage. These latest revelations put me in a different place, but, honestly, I am not sure what that place is. That is new for me. It creates an uncertainty I am not sure how to manage, but it is something I have to manage. It is another hurdle to jump. It is something that scares me a bit. I do not remember being scared when I first went into surgery in 1986 for the beginning of this surgical journey that has had 9 major chapters (and numerous footnotes). I remember my Great-aunt Helen telling me I was very brave in 1991 as I laid in a hospital in Scottsdale, AZ. I did not feel brave. I merely felt that I wanted to somehow live a better life than I was. At this point, I am not sure the goal is that much different. I merely want to know the best way to manage this lasting and unwanted companion. Ultimately, the future is uncertain, but that is not any different from anyone else. We are all uncertain and more or less unprepared for tomorrow,  because for the most part, we have less control that we might believe. That is the giftedness of life. It is more unpredictable than we might think. When people complain of boredom, I find myself asking where they live? I have never really been bored and I do not anticipate that will happen anytime soon. However, it is time to get back to the task at hand: grading, writing, commenting, and living this amazing life I have.

Thanks for reading as always.

Dr. Martin

Where has 40 years gone?

IMG_1645

Hello from Fog and Flame,

While many feel there is a let down after the holidays, and there is some truth to that reality. However, the first part of February is, for me, a time of memories and events which have shaped my life in more ways than I am readily aware. The subconscious consequence of that February during my first foray into college has affected me and my outlook in more ways than my surface demeanor generally reveals. The second historical event of early February (and in fact his entire life) actually occurred before I was born, and had I not gone to Dana College and read the book, Letters and Papers from Prison, I would not be cognizant of the 4th of February 1906 and its significance, both for Germany, but more importantly perhaps for our present circumstances here in America. I need to write an actual editorial to the Press Enterprise in response to something published yesterday, but that will come. There is a lot on my plate today, but as is often the case, I need to organize my brain before I can proceed with the day’s tasks: grading, bills, responding to students’ needs (and yes that is the plural form), and getting the CDT ready for the coming week. I spent about 8 1/2 hours or more yesterday reading and commenting on others blogs, but some additional work is necessary today for I have completed that task.

It is early afternoon and many people are getting amped up for the Super Bowl. I am not even sure I am going to watch it, even for the commercials. I would be much better served just doing the work I need to do. If the Packers were playing, I must admit, I would be all over it.  Nonetheless, they did not quite make it, in spite of a rather ridiculous season. I am reminded when I had one of my graduate school officemates over to watch Super Bowl XXXI between the Patriots and the Packers. That was the year Desmond Howard ran back a kick off for a touchdown. There was also the first year I lived here in Bloomsburg, the Packers won the Super Bowl then too and I was in the middle of Steelers territory. Since then there have been near misses, but it is what it is. Ultimately, it is a game that creates a lot of hype and continues to be a cultural phenomena selling a lot of food and beer, and now demands $5,000.000.00 for a 30 second commercial spot. I wonder if that money might be spent more judiciously elsewhere? Again, I am sounding old, but that is becoming more the norm than the exception. The reality of age is front and center in a number of ways, be it in the morning mirror, in a conversation with my PCP this past week, or in the fact that I have scheduled-appointments with three different specialists in the next two weeks. Fortunately, since I came back from Poland, I have somehow been more focused and productive than I have been for some time. I am trying to figure out ways to “ratchet” that up to an even higher level. There is an interesting term: ratchet. It means something quite different today, no diva intended here. Language always fascinates me . . . it is dynamic and entertaining.

Part of my aging focus is remembering this week four decades ago. I had gone away to Ames, Iowa to be a student at Iowa State University and I was not managing that task very well. I had little direction, and, in spite of time in the Marine Corps, little discipline as I wandered aimlessly around that beautiful campus. I lived in the Towers, but did not really like the dorms. I had some seriously-partying-floor-mates and with them I was easily swayed, another example of my lack of direction. While the fall quarter had gone semi-reasonably, the Winter quarter was not off to a great start and when I got back after Christmas, my life was soon to get more complex. I had been foolish in how I responded to a breakup with the first girl I had actually ever dated. Her name was Barb and I was quite amazed by her. The fact that she was my pastor’s daughter, and the sister of my best friend, certainly did not help matters when I mishandled our demise. As such, I was already an emotional mess and decided that it was easy to simply assuage my broken heart through a bottle, a bong, or a blunt, or all of the above. Not a good plan. Within a week or so of returning to Ames, I received a phone call that my older brother had been seriously injured in a rather freak accident sustained while working as an electrician on a simple building project. The consequence was a massive brain hemorrhage and he had lapsed into a coma. My father, in his typical manner, encouraged me to continue with my studies and they would check in with me regularly and offer updates as needed. To be honest, I do not remember how I took that news beyond a rather sort of feeling sorry for myself instead of considering how it affected his wife and three small children. Consequently, I was now even more aimless and I chose to do nothing. I did not go to class, I did not ask for help, I merely drank and smoked more. Foolishness was not in short supply. The short story of what could be quite an entry was I finally went home on the 10th of February to see my brother for the first time. It was the end of the semester and finals were the next week.

As I got to the hospital that night, there was nothing that could have prepared me for what confronted me in that ICU cubicle. My brother was merely a shell of the person I had known. Between being totally assist-controlled and vented, his eyes had been taped shut to keep them from drying out. He had an enormous dent on the right side of his head where they had removed his skull to manage the swelling and he was down to less than 100 pounds left on his six foot frame. My sister-in-law, Carolyn, only 25 years old, was there, and that evening, I had gone to the hospital with my mother. In the five weeks my family had held vigil at his bed, my father, through tiredness and stress, had actually fallen asleep and sideswiped a guard rail on the highway, so they were down to one vehicle. What I realized was in my absence, they had tried valiantly to manage a terrible situation. In that room as I tried to make sense of the sight before me, I held my brother’s hand and spoke to him, hoping he might hear my inadequate and rambling attempts to tell him that he mattered and that I loved him. Yet, shortly after my first arrival that evening, he began to seizure from the complications of his injuries. We were ushered out of his space and they began to work with him attempting to manage those seizures. As we waited in a room for families, I called my father, who had stayed home because of a cold. I told him he needed to come to the hospital (about a 20 minute drive) and he noted he was leaving immediately. A few minutes later a doctor, one of the many attending at that point, joined us in that room as I held my sister-in-law’s hand. He spoke of complications and battles. There was little emotion, but some empathy in his words. Within a few minutes one of the nurses came into the room and they merely looked at each other. At that point, he turned to us and said simply, “I am sorry; we lost him.” I felt overwhelmed and helpless. I felt guilty and worthless. I had do nothing over that five weeks, and it seemed likely that my brother had waited until I showed up to leave this world. I looked out the window as my eyes welled up in tears and said in a voice above a whisper, but perhaps not as a shout, “FUCK!!” I had prayed in those weeks that he might be spared for a wife and children, and all I could see in my selfishness was an unanswered prayer. By the time my father arrived that night, my brother, Bob, had passed away. Again, in his wise manner, as his eyes filled with tears, he sniffed, and said softly, “It is better this way.” He was right, even though I did not want to accept that in the moment. I had to call my pastor that night, the same pastor whose daughter I had broken up with poorly. I had been banished from their house because of my previously mentioned foolish behavior. What I remember about that is Pastor Fred was an amazing pastor, and as the somewhat surrogate father he had become, he managed that side also. I still remember elements of that sermon, and he would eventually one day preach at my own ordination. Over the next couple of days, things are still a blur. I remember reaching out to another girl that I knew and I recollect that she actually went to the funeral home with me the first time I would see him in a casket. I remember needing to touch his hand to feel the coldness, the lack of body temperature, to believe I was not in the middle of a nightmare. I remember being at Carolyn’s house the next day with my Grandmother Louise, who is my hero to this day. That next day I walked out onto the porch experiencing a pretty warm day for a February in Iowa. I stood on the porch and cried. My Grandma held me like she had when I was small. Somehow, I felt safe in spite of myself.

From that time 40 years ago until today, my sister-in-law and I are still in contact and she is more like a sister than anything to me. She and I have both been through a lot, but we have maintained that appreciation for each other. She helped me when I struggled mightily that next year. The grandmother mentioned above would pass away only 7 months later and that was even more devastating to me. I had left Ames and was out of school. I was back home bartending and partying pretty much non-stop. Events that could have caused me a life of trouble were not far from my door. I would wander more, but Carolyn stood by and supported me and loved me, even in the midst of my stupidity. Ironically, in one major aspect I ended up ahead of her, completing my doctoral degree. She eventually did the same and I was able to help her, giving back as she had given to me. Those three young children are now middle aged adults themselves and growing up without their father has had consequences. I see that in ways perhaps they themselves do not. Yet, all three of them are very different; each intelligent and capable, but quite varied when it comes to how they manage their lives. All successful in many ways. Distance as well as my somewhat itinerate lifestyle has not allowed me to be as close as I should have been, but I do believe (or at least hope) they know I am proud of each of them and I love them. Fortunately, one of them has kept me in the loop quite well and for that I am grateful. I have often wondered how things might have been different if that tragic end to my brother’s life had not occurred. One can play hypothetical games and doing such is probably not that beneficial, but he would be retirement age now. I wonder what he would think of this world? He was an excellent mathematician and his two sons have that quality. He was an outstanding musician and I think all of the three children have that. Of course, Carolyn is an outstanding musician also. That is how the two of them met. He was a product of the late sixties and I think he might have been a life-long rebel or perhaps he would have finally settled down and followed our father’s footsteps of being the family person. It is fun to imagine. While he might have been bald, if he had hair yet, I can imagine it in a pony-tail. What I do hope is, wherever and however he might see this, is that he knows that I admired and looked up to him more than he ever knew.

The second thing I  noted in my intro was my college reading, and what eventually became a dissertation, on Dietrich Bonhoeffer. For those of you unfamiliar with him. He was a German Lutheran pastor involved in the plot to assassinate Adolf Hitler. In fact, shortly before the camp was liberated, he was hanged in Flossenbürg in April of 1945 because of his involvement in that plot. Bonhoeffer strongly believed the church had the obligation to speak out against the discrimination and abuse of power that was happening in Germany in the 1930s. When referring to the church as the spoke that had to stop the turning of the wheels as Germany embraced the propaganda of the Nazis. In his book, The Cost of Discipleship, Bonhoeffer wrote, “Christianity has adjusted itself much too easily to the worship of power. It should give much more offence, more shock to the world, than it is doing. Christianity should take a much more definite stand for the weak than to consider the potential moral right of the strong” (emphasis in original). When he noted the issue of the Jewish question, which of course is what the Nazis would call the Final Solution, Bonhoeffer wrote, “A state that threatens the proclamation of the Christian message negates itself. There are thus three possibilities for action that the church can take vis-à-vis the state: first, … questioning the state as to the legitimate state character of its actions, that is, making the state responsible for what it does. Second, is service to the victims of the state’s actions (again, emphasis in original). The church has an unconditional obligation toward the victims of any societal order, even if they do not belong to the Christian community. “Let us work for the good of all.” (Gal 6:10) These are both ways in which the church, in its freedom, conducts itself in the interest of a free state. In times when the laws are changing, the church may under no circumstances neglect either of these duties. The third possibility is not just to bind up the wounds of the victims beneath the wheel but to fall [ourselves] within the spokes of the wheel itself. Such an action would be direct political action on the part of the church. Bonhoeffer calls on us within the church to speak out strongly and to act powerfully against injustice, discrimination or executive orders when they create too little or too much law. Bonhoeffer’s call to action is relevant and important in this time. Seems I need to reread some of what I have read in the past. So much more I could write, but I will stop for now and leave you some thoughts about Herr Pfarrer Bonhoeffer.

To my nieces and nephews and to Carolyn, I am thinking of you this week, and I love you all. To the rest of you, thank you for reading.

Uncle Mike as you call me, Michael as I prefer.