Managing a Partial Body

Hello from an airport,

Actually it had been awhile since I have flown (October or early November), but the weekend will be a whirlwind. I will have covered the entire continent with a stop in the middle once again in about 54 hours. In the midst of that, I still need to finish up my tenure things. The stress of tenure and of working to illustrate that the last five years are worthy has taken its toll on me.

A trip to the ER and bleeding from my stomach and intestines is a graphic reminder of my substantially modified GI tract. It is always frustrating because it can be is debilitating and I hate being controlled by my Crohn’s. There have been certainly more positive times than negative. In spite of 9 surgeries and other complications, I have maintained weight (in fact, perhaps too well) and I really have few limitations. The main one seems to be hydration. Of course, the logical answer is to drink more water, but I already drink ridiculous amounts of aqua. The issue is my body does not know how to manage it. I can throw it out faster than I can consume it. In fact, two years ago, after surgery, I had an IV and they were putting on 1,000 ml extra every three hours and they could not hydrate me.

Stress is certainly a complicating factor and as I noted in an earlier post I was told to quit being stressed. I wish it were that simple. Throughout my life, whenever there was a significant deadline and I had to provide something, I worried whether or not what I did was adequate, whether I was “in trouble” or not. I was directed the other night to stopping stressing and quit bleeding. Again, if it were only that simple. And then I was told I was more emotional than a “pregnant woman”. Really?? Hmmmmm. I guess I can add that to a list of things: I have cramps; I throw out (and sometimes up – yes; it’s true) blood; once after surgery in 1997 I was told I had experienced the equivalent of 36 hours of labor pains; and now I can add this “pregnant woman” reference to the list. There is one substantive difference. At the end of your curses or process, you have something to show for all of this. I merely get to keep doing it. I might be one of the most empathetic males in regards to the plight of woman and their cycles in the entire world. I should probably note that I also find this list of comparisons rather amusing at this point. I am not offended, and I was not offended by the reference the other day. In fact, when a female notes that sort of parallelism, it means something very different than if a male would do the same.

As I am writing this I am flying and doing it on the WordPress app. I had just finished and now lost everything I had written over the last 15 minutes or so. Alright then; I lost it again. Seems the last couple times I have posted I have gone through this drill. What I noted is that I have probably given more information than those who are reading might have bargained for. But it is in the very hiding of my struggle with Crohn’s that I have had some of the most hurtful consequences. In the 30 years since my diagnosis, as noted in a paper given at a health conference, “I have been held up like a poster-boy for managing this disease, in spite of serious complications; I have been told by an ex-spouse she was tired of being married to a wimp.” I have struggled with my image, which is a daily battle and ended up with a DUI, after trying to make it home 6 blocks because of complications. I got pulled over 85 steps from my house. I certainly deserved the DUI, but the policeman told me later if I had explained, he would have let me go home. Pride or stupidity. It cost me a lot in that situation.

Pride is such a complex thing; where is the line between self-confidence and arrogance? I believe it significantly depends on both the person and the circumstance.

Una nota para mi hijo adoptivo y su hija, que también son hermanos Jordan, gracias por los textos de hoy y sus palabras. Me complace compartir con ustedes y atención significa mucho para mí. Melissa, gracias por sus textos y por todo lo que haces. Te quiero tanto.

To everyone else; thanks for reading.

Miguelito