“Many of us are tempted to think that if we suffer, the only important thing is to be relieved of our pain. We want to flee it at all costs.” — Henri Nouwen, “Turn My Mourning Into Dancing, p. xv.
When I opened the envelope and read “positive” on the top, I felt shock and numbness. I could not believe what I was reading, especially after the neurologists had said that he did not see any symptoms of HD at all. His optimism gave me a reason to be optimistic as well. After going to my regular doctor and was getting pretty decent bill of health, which included normal levels of testosterone, I thought almost certainly I was going to “dodge the bullet!” So when I read “positive” my heart sank. “Oh no, not me! Now what?” As the doctor started to talk, I missed most of what he was saying because my mind had shut down to try to take this in. I had been making plans for a “negative” result and now all that had to change. Even though there was no visible chorea movements, I was concerned about my cognizant abilities. The team, however assured me that since my father, who was the HD gene carrier, had been fully cognizant up until the end, that most likely, I would be able to do the same. That gave me a lot of encouragement. However, I knew that I would have to make some adjustments in my employment since it’s imperative that I did not go through a lot of stress. In fact, my job, if managed correctly, could actually help me through this grief process: I am a hospital chaplain. Day after day, I walked into rooms where someone had just received the news that he or she had cancer and had six months to a year to live. Or where someone was being pulled off life support or had just died and I had to provide spiritual and emotional support. Now I was the one getting this horrible news. All of sudden, I was able to connect with those patients and their families. I had something in common with them: a terminal illness. Now I was grieving.
As I was driving home, I was in still in shock. I didn’t show any emotion and in fact, tried engaging in small talk with my wife, Claudia. It really hadn’t sunk in. I was trying my best to think positive and thank God for allowing me to know this and to make the preparations I need to see this through. I kept telling myself that I am very blessed to be 47 and still functioning in my job as a senior chaplain. I was carrying out my functions without any problems and I was struggling with a few things but I chalked it all up to stress.I stopped to see my mother and we cried together for a while. This was déjà vu for her because she had deal with my father. This was bringing back a lot of emotions for her. He had died at the age of 68. And she had been with him through his last years and had seen the physical toll it took on his mind and body. He actually died in the same hospital where I was currently working. He had reached a point where it was impossible to swallow anymore and he had refused to have a feeding tube. So according to his wishes, we put him in hospice and let him die with peace and dignity. It was the best decision we ever made.
Having gone through that experience helped me to understand hospital ministry and hospice. And as a pastor in a multi-church district, I was being blessed but I was impressed that God wanted me to do something different. When I met the hospice chaplain who took care of my father I felt the calling to do the same. And it would prepare me for whatever my come my way.
Now I was at that point in my life where the question is now, “Is being a chaplain for two years going to prepare me for this challenge? Is being a chaplain automatically giving me that connection to God that I am supposed to have?”
That is why I have to decided to write this book, which will probably more of a journal than a book itself. The purpose to be able to express my emotions on paper and also be able to theologically reflect on my day to day journey. I hope that this book serves the purpose of inspiring other HD patients and their families as they journey with God and myself through this difficult waters.
I feel I have to mention a couple of authors whose books and writings have inspired me when going through difficult times. I have enjoyed all of Philip Yancey’s books but, “Where is God when it Hurts?”, “Prayer: Does It Make Any Difference” and “Soul Survivor” have been truly inspirational. And Henri Nouwen’s “Turn My Mourning Into Dance: Finding Hope in Hard Times” and “Wounded Healer” have been my favorites. And of course, as a Christian, the Holy Bible in many different translations has the mother of all books, the book that inspired all of us to live each day to the fullest.
Prayer“Father, today I am burying life the way it used to be. My former goals and dreams are gone. I am not sure what to do but I trust you will show me. I place my new life in your hands. Help me develop a new purpose in what is left in this life so it may not be in vain. Amen”