Wondering When or How it Ends

Hello from my study,

I have another blog in process, but this past week I have struggled with other possibilities and concerns. I have always been pretty open about my health issues. They are complex, all related, but still unpredictable. It is a consequence of being born a bit too early (26 weeks and 17 ounces). That is a pretty amazing statistic, particularly in 1955, but somehow I managed most of it through childhood and never considered any of my childhood maladies to be anything out of the ordinary. I had some intestinal things, mostly chalked up to a peptic ulcer syndrome. In fact, when I was working at Sodrac Park, I had milk in a refrigerator to coat my stomach and manage the cramps and pain. Otherwise, there was little that seemed all that abnormal. Into my mid-twenties, there were some small issues, but I chalked it up to working a bit more intensely than I should have. I made it through college with a double major and double minor, worked 20 hours a week, and somehow transferred and transferred back and managed to graduate on time. I knew there were times it seemed I could not gain weight, but I figured that was a gift.

Then came a day in January of 1984 and a simple trip into the bathroom changed my life. After spending more time in restrooms in a month than I had in probably a year, and the loss of 25 pounds in three weeks, I would be diagnosed with an Inflammatory Bowel Disease. Without going through every complication since, suffice it to say that with surgeries, abnormal biopsies and other treatment, it has been a path that I would not wish on most people. And yet, I have been blessed to manage life pretty well in spite of all those issues. A great majority of the time I feel blessed that I have always had options and, regardless the difficulties, there has always seemed to be a light ahead. I have been told I am a miracle more times than I have fingers. I have been told part of the reason they do not know what to do with me is most people do not live this long. I have been told I am like an upside-down jigsaw puzzle. The analogies are numerous and most of the time I find them hopeful, but that is getting more and more difficult to do. When I was diagnosed with an IBD, I was still afforded the best treatment by some of the best doctors in the world, but biologics for IBDs did not exist then. That means the treatments for me, when medication did not work, regardless the dosage, more surgery was in store. I am grateful for all of those things because at the time, it was the only thing they knew to do as my body worked diligently against itself. The first surgery was in December of 1986. My last surgery was in August of 2012. That is a long time to keep cutting away on one body. It fact, there is really no more they can remove. I guess that is a good thing. However, all of those removals and all of that medication has had consequence. In fact, ironically, currently, the Crohn’s, which was the final diagnosis, is not currently active. That too is a good thing because it makes life much more manageable. However, the consequences, they are numerous, and they are complicated.

The removal of an entire large intestine and a significant part of the ileum has had some serious ramifications. The large intestine is the most consequential organ in terms of hydration for the human body. Missing it creates problems. There is an area of the ileum that does all your B complex vitamin absorption for the body. Not having that part of my intestine means I do not absorb. I did not know that until about 4 years ago. So for almost 25 years I went without adequate levels of B Complex Vitamins. By the time we realized the problem, my levels were under 80. The consequence when I finally found that out had caused me all sort of difficulties. At least that was remediated. The use of sulfur-based antibiotics, hydrocortisone, and extreme doses of prednisone for years also had repercussions. So where am I now? Hydration or dehydration has resulted in a variety of maladies. First, I dehydrate all the way to the cell level. That has resulted in Diabetes Type II. I make insulin fine, but I do not absorb it. Dehydration has had a deleterious effect on my kidneys because they cannot figure out what to do. Currently I am in what is called Stage III Chronic Kidney Disease, which is connected to the Diabetes. In addition, I have something called NonAlcoholicSteato-Hepatitis (NASH), which is liver damage as a long-term outcome of steroid usage. One of the times my kidneys decided to shut down it elevated my potassium to the point it was affecting my heart. That resulted in bradycardia as illustrated in an electrocardiogram. I have also had multiple strokes (which I think can be again pushed back to dehydration). So . . . where am I . . . a walking time bomb of sorts. Most of the time I can ignore it, but the past week or month, the diabetes is affecting my vision, which is not uncommon, but they tried to do a retinopathy exam on me recently, and it could not even be read. So . . . fortunately I have reached out to my ophthalmologist and she is going to try to get me in yet this week to see what we can do. My eyes are an important part of my livelihood at this point, and that is even more the case when I am teaching online, asynchronous remote.

As I have noted, I know how fortunate I am, but today I am feeling a bit overwhelmed and defeated. Generally I know that being here is a blessing and I am blessed to have a job and do something I love. I love when the light goes on for students and they understand something they did not, be it about writing, working with someone while managing their internship and to see how they begin to develop their professional identities, or seeing how they move from being a freshman to a graduate student and professional (when I am fortunate enough to be there for the process, it is such a wonderful experience). One of the things I am well aware of is how blessed I have been to be there at those moments of poignancy. Sometimes it was a funeral, sometimes it was when a life seemed to be crumbling around them. Sometimes it seemed insignificant like someone was looking for a class or meeting someone on a sidewalk. It is interesting how, in my piety, I believe God work’s through us, for us, and yes, even in spite of us. During the past couple years, I have been fortunate enough to experience things I never expected like having an exchange son, traveling back to sort of retrace my roots and see many of my childhood friends, or reconnecting with both family and friends from the beginning of life. During the past half dozen years, I have been blessed to travel and experience things I could not have imagined and see countries and beautiful people who have made my life so much richer. I am grateful beyond words. From the people at Costa Coffee who blessed me with their kindness to a musical quartet from Ukraine; from my Russian student and her family to one of the administrative staff at UJ, I continue to see how incredible people are. Today is one of those days I wish my grandmother was still here and I could speak with her. She could always help me to see the positive in things. She would be quite old at this point, and it would be interesting as I have, as noted recently, lived longer than she did.

I seldom think about this, and perhaps I should consider it more carefully, but I imagine (and I am not trying to be morbid) one day the homeostasis in my body, which is so incredibly fragile because it has had to adjust on the fly will fail to adjust and that will be it. That is not something I want to happen soon, but it is something I am comfortable in realizing. I still have a lot I want to do, not just in this very calendar year, but beyond. I am not willing to quit, that is for sure, but it is tiring, and today, I will admit, I AM TIRED. I think earlier in my life, much as anyone, and in spite of the multitude of things that seemed stacked against me, I took life for granted. Contrary to my best friend, who passed over 5 years ago, and shocked me when he, shortly before he passed and the last time I saw him, said, “I never expected to get old.” I am not sure what I expected, but I did not think about passing as a young man. Well, I am certainly not that now, but I do not consider myself old either. I am reminded of the words in the funeral liturgy that state “Well done, good and faithful servant.” I am not ready to hear this words, if we hear them when they are spoken for us. I am not ready to simply stop, I have too many things I still want to accomplish. Perhaps the problem is I do not want to slow down. I guess that was the case from the outset. I could not even wait to make it to 40 weeks. I simply needed to get going. Perhaps pacing might be reasonable. Perhaps, slowing down is prudent, but I do not want to. There is so much to see and learn, and experience. There is so much I think I can still do in the classroom or beyond. At this point, I can certainly say, I do not know when or how it ends, but I hope it is still some time in the rather distant future. I hope this blog did not sadden anyone. I will be okay. Regardless what happens, I am blessed in so many ways. Thanks to all of you who take time to read this blog in the various venues or here in WordPress. I am blessed by your thoughts, your wishes and your responses. Steve Walsh, the former lead singer for the group Kansas, did his own album once upon a time and there was a beautiful song there he wrote about his grandparents. He was blessed to have Robby Steinhart the amazing violinist for Kansas work with him on this album (Schemer Dreamer). We are part of our generational process, and I will always be grateful to the Grandmother, who was the first mother I remember. She loved me deeply and unconditionally and I am still fortunate that she was my Grandmother and first mother.

Thanks as always for reading,

Michael