Planning for an Uncertain Future

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