I don’t want to be anxious but I have seen where HD took my uncle and my father and I am worried because I don’t want to go down that same road nor do I want my family to see me suffer. I want to have the peace of God that surpasses all understanding but it’s difficult when my heart is anxious because it knows that I will probably be dead in 20 years and may not even have the capacity to walk, talk or worst of all think, in about 10.
Now I think about the stupid things I shouldn’t have done in my life thinking I was going to live to be 75 or 80. I would definitely not have made certain bad choices that probably didn’t help this slow down this process. And after knowing about my own father’s illness, should have prepared myself financially so that my last years would have been more secure. Of course, none of this makes any difference now and it is certainly not going to help me to feel guilty about things I can not change.
Back to the family. As we sat around the dinner table, and watched everyone’s reaction, I immediately began to get the sensation that they were looking at me differently. I had been the source of strength and fortitude for them for so many years and now they were going to start leaving me aside on certain things so that I would not be “stressed out.” I do not want that to happen. I need to be involved in the day-to-day decisions so that I can have a sense of accomplishment. I will need routines that will help my mind stay focused. I am feeling very good about writing this journal and about leaving a legacy behind. In fact, I have been thinking about recording some DVDs with an interview and some pictures of the journey. It will be a long and painful journey but it would helpful to me. I was also thinking about doing my own website with pictures and sharing my experiences on a day-to-day basis so that others can be connected. This way if I get to the point that I can not talk, I know I can still write.
I just don’t want to be treated as an invalid or disabled. I have not gotten to that point, and in fact, I am pretty far away from it.
I love what Philip Yancey says about prayer being “a wrestling match with God.” He reminded me how Abraham negotiated the salvation of Sodom and Gomorrah. How Moses negotiated for Israelites. How Job, with an honesty rarely seen, says, “What would we gain by praying to him (God)?” Or how David cries out, “I am worn out calling for help; my throat is parched. My eyes fail, looking for my God.” How many of the promises of the Scriptures remain unfulfilled and that mercy and justice do not rule the earth. How Jesus Himself wrestled with God in the Garden of Gethsemane, asking that if there was any other way to save mankind to please reveal it to Him. In fact, many of the prophets were constantly trying to “change God’s will” rather than conform to it. He quotes Abraham Heschel, when he talks about the protests:
I read this I am comforted. Comforted in knowing that I am not the only who has had a wrestling match with God. Knowing that I am not the only one who did not quietly accept his condition without some fight. That is true prayer.
I have told my uncle who is a psychiatrist and he was such an encouragement. He insisted that I continue in my job until the symptoms become too obvious where I can not function. He says that I should find the inner strength to keep my emotions in check and not feel sorry for myself nor make any excuses for my actions or misjudgments. That I should use this job to become a better person and that stress should not be avoided but managed properly. That by sitting around doing nothing, I am actually going to be more depressed. And he that will never patronize me or talk down to me and that I should be condescending to myself or let anybody else be that way to me. And he so right! I feel so much better!
My wife and I discussed whether it would be a good idea to share with the children all the information concerning their choice to be tested and whether or not to tell them about invitro fertilization options for their children. According the HD team, the affected HD gene can be removed and then plant the fertilized egg back in the womb. I believe that the children should know about my condition and tell them about their options. She believes that we should not stress the children out about their future. So we agreed to call them and see how they take the news and they are doing well, then we share their options about testing.
My 18 son took it well. And he received the information about the invitro as very good. He was concerned about my wife because he knew she would be affected. But she assured him that she would be ok. My 20 year old daughter was alright as well. She said that she wasn’t going to worry about the disease because she believed the end of the world would come before that. I don’t believe neither has realized how serious this could be but I don’t want them to be anxious. I want us to have the same relationship as always. And I hope they take the time later on to research the illness and make some decisions themselves. For now, I left this on a very upbeat note and asked them not to treat me different or patronize me. They both agreed. My wife was surprised at how well they handled it. I wasn’t. I trusted in the way we brought them up: to be strong, independent, and above all to have a relationship with God. Now all those seeds we’ve planted over the years are finally beginning to produce some fruit. Of course, they’re human and make mistakes like most teenagers do but they are good kids.
I feel a little more inner strength and peace in knowing that God is going to be with all of us in this terrible tragedy. Since I have read about and taught people about how to deal with our losses, I kept telling myself that I would be prepared for any kind of tragedy that would come my way. But I was completely wrong. When it happened to me, all my training went out the window. It was like being thrown off balance. My CPE Supervisor once said to us in group that he intentionally threw in “Un-Christian” words and comments just to throw us off balance because good pastoral care meant being aware of how it affects us and making the necessary adjustments to continue providing good care for our patients. Those teaching moments have given me the tools to be aware of my emotions and to keep them at bay. Now those emotions are going to become even more difficult to keep at bay because of my own condition. But that’s what being a hospital chaplain is all about. It will also teach me to do the same with my own family. I have to be aware of my emotions and to keep at bay and continue to provide the strength they have looked for in me in the past. That will be the struggle.