Well, I meant to make my first ACPE conference in Kansas City this past week. I made it to Kansas City, barely, but did not attend a single event at the conference.
I have Chrohns Disease. It has decided to take a turn toward the dark side. I have been doing fairly well since being diagnosed five years ago. Simmering I guess. Well, now I'm in a full boil. My gut decided to close up after the Cubs game last Sunday and I was on a train to Kansas City Monday afternoon. I made it to the ER at Truman Medical Center in KC just after midnight after getting off the train. I was in so much pain, I could not tell you!!!!! If not for Ken and our friend Jose who had already arrived in KC ahead of us with a car, I would have been in bad shape. Needless to say I flew home to Round Rock on Tuesday afternoon, barely making that trip as well. I saw the doctor on Wednesday and discovered I have a blockage and need to have a dilation this coming Thursday.
Now I face the reality of living with a chronic disease in a new and more profound way. IV infusions are most likely in my future and I have no idea yet how this reality will affect me professionally or personally yet. What I do know is that I am not letting this keep me from enjoying my life. I love my kids, my family, my baseball and everything else. I continue to do that. I NEED that. That is not to say that discouragement does not creep up on me. It does. Especially when the pain hits or the gut feels like a balloon with way too much air. The real problem for me, and the one I am least focusing on at the moment at least consciously, is what this illness MEANS for me. Spiritually, what is this illness going to mean for me. Look, the physical is the obvious. I am going to have physical issues, even ones that might cause me to die earlier than I would ideally like, that I understand. What I can't quite grasp is how I LIVE with this. I don't mean that I can't live with this. I do and I will. What I mean is can I live with it in such a way that I don't have to alter my course, particularly on a personal level, but also in my desire to be a CPE Supervisor. I mean, how do I use this to be a better person and caretaker, a better educator, a better parent, a better husband, a better minister... just better.
When I talked to my mother a few days ago to let her in on my life change, she said that this shouldn't be happening. My reaction was that, actually, it should. Not Chrohns Disease necessarily, but something. We all have deal with something. This is my something. Life is not avoiding the suffering, it is how we LIVE with the suffering. This disease is helping me learn how to live in such a way that happiness can always be my true home and companion. Thich Nhat Hahn, my teacher reminds me of this in his writings. The sound of the bell brings us to our true home. I guess the movement of my bowels does the same for me. Kind of crass I know, but the truth. I guess I'm saying that I seek not to suffer with Chrohns Disease, but to live with it and still find happiness.
On the train from Chicago to Kansas City, I apologized to Ken for being a terrible travel partner. His response helped me. He said given everything I was going through I was an excellent travel partner. I was physically in pain, great pain, but I was not suffering. I only begin to suffer when the pain departs and I have time to think about what is going on with me. In the meantime... I will live, laugh and love.
I have similar struggles learning to live with Narcolepsy. The complex emotions involved in living with a chronic illness are not easily resolved. Each day I face them...sometimes really well, other days not so much :)
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