This title is both intentionally and, for some, frustratingly vague. Yet, if you really know me, it is profoundly clear. In March, on my own volition, I decided to make some dietary changes. Those changes were based on my own self-image and a realization that my advancing age required me to make some changes if I was to do more than merely exist. Pictures taken by a few who are notorious for capturing the least flattering moments, and they are legion (the moments, that is) illustrated an advancing aged frumpy looking person who was in the throes of what my father called “carpenter’s disease”. The thickness of my nine-times surgically opened abdomen was just the opposite of what one would expect from someone suffering from Crohn’s Disease. It was embarrassingly evident in every picture.
If you have been following this blog, you know that the change in diet has continued to evolve and, while I do not mean extreme to be ridiculous or pejorative, it has been pretty extreme. And yet, I have not been as strict at following it as I might. I think that is about to change. While I am seeing some positive consequences, there are other things happening that cause me a sense of pause. I think it is likely I need to be even more intentional and more about radical ( which is a pun if you know some of the parts of a battle) about what I will and won’t eat or do. Last night, I had the opportunity to speak with my closest and most important friend, my friend from early childhood. He is currently battling ALS. Every time I see someone take the ice/ice water challenge on Facebook, I wish they would donate the money instead. Peter talked last night about the progress of this devastating illness. We talked about the importance of our joint history and I mentioned that the shared history keeps me grounded because it reminds me from where I came: a simple blue-collar family that was probably living on more of a shoestring than I ever knew. His father farmed about 80 acres, but he always had another job or two. My father worked 12 hours a day/ seven days a week for a number of years. Through our church events our families were best friends. We talked about the fact that our fathers actually passed away less than two months apart. It is ironic that we are fighting our own health battles simultaneously about 20 years later. Peter’s battle is much more serious than mine, but it was just a bit “komisch” to consider the parallels.
Today (or technically yesterday now) was also another reality check in working with or on behalf of another. Time and experience has a way of clarifying who someone is. I have put my own reputation on the line for someone again and again since first meeting him or her. Speaking with a colleague today, it was made abundantly clear that my willingness to provide a reference needs to be reconsidered. It is unfortunate, but it seems this is beyond what anyone can do. That need for pulling back is overdue, but it has now hit a tipping point. As one other often admonishes, “it is their issue and their choice.” And so it is for anyone. Choices and consequences are what life is made of. I am wondering how I might have changed the path I am presently on. Beginning life at a whopping 17 ounces and without a fully- developed GI track or fully-developed lungs seems to have created some significant long-term issues. Even if I had known before the visible onset of Crohn’s at 28, I am not sure there was a clear sense of diet or other options. Even after the onset, no one ever spoke to be about diet with the exception of the following: if you eat it and it bothers you’ don’t eat it.” Certainly there were warnings against things like seeds, nuts, popcorn, and such, but the move to the ileostomy changed even those instructions. There was nothing that seemed to provide some of what I know now or how things like blood type or other dietary things could assist me. That is the amazing thing about both the study of medicine and our amazing bodies. They are both constantly evolving. When I was first diagnosed I read everything I could. When I went off to Scottsdale, AZ in 1991 for a specialized surgery I did it because it provided an opportunity to live a relatively normal life. This tube we call our digestive system is much more complex than we might think. I have learned that first hand. Not just because it manages everything we place in our body by processing it, but because it also tolerates things ( like acid) that nothing else in our body can. Mr. Galán calls me “miracle man”, while it is kind, I am not miraculous, it is my body that is. I have not learned to compensate, it has.
I remember my Great-aunt Helen telling I was very brave as I went into that surgery on a April morning. I did not feel brave, and I was actually scared, but that choice to fly from Pennsylvania to Arizona was about hoping for a life that was not controlled by a restroom. For the most part, while I have learned that the surgery performed has not had a particularly high success rate, I have managed to make progress. Why because I was never beyond trying to make my life better. Why have I made it through, or was willing to subject myself to, nine surgeries? For the same reason: I am not beyond trying. I will admit tiredness from time to time; I will admit to moments of doubt or even self-pity, but those moments are generally brief or seldom. I have little time for quitting and failure is not an option I want or wish to consider. There is too much yet to do in this life. I do not wish to dwell on “what ifs”. If we merely second- guess our lives, we only look back and not ahead. I do understand the importance of reflection. It is wise or prudent to do so. That is what is lacking in too many people, a failure to analyze or think critically. Today a student lamented that an assignment is too difficult and I should just make it more simple. No . . . what the student should do it look more critically and work more diligently. Connecting pieces and comparing and contrasting takes research and analysis. It is figuring out the pieces and then putting together a puzzle that creates a clear picture. Studies show that teaching to the test has so failed our students because they lack problem solving skills; they lack the ability to really try. Have we created a generation that is beyond trying? If so, we are in big trouble.
What I know for myself, I am never beyond trying. I refuse to give up or give in. In 59 years, I have managed much tougher things and this will be managed too. While it will take disciplined effort and focus, it is something that I understand and it is something worth doing. For whom shall I do this? For me. If that benefits others, so be it, but this one is for me. There are certainly those who matter, and those who have an interest in all of this. However, while the learning is slow at times, I am learning and certainly, as it has been most of the life, it occurs the hard way it seems.
Thanks for reading,