“The hardships we endure require more than words, of course, even spiritual words. Eloquent phrases can not soothe our deep pain. But we do find something to lead and guide us through. We hear an invitation to allow mourning to become a place of healing, and our sadness a way through pain to dancing.” — Henri Nouwen, “Turn My Mourning Into Dancing,” pg. xv.
It wasn’t until the day after alone at home that I began to cry, sobbing cry. “Why oh God is this happening to me? Why me? This hurts too much! All of sudden, life as I know it is over. Why? A part of me is gone. Why? My future without HD is gone. Why? Why me?”
The emotional pain and the hopelessness was too much. I began to think about other options: suicide. “God, I cannot go through with this!! I cannot go down that road of a long drawn out death! I can’t do it! Just let me end my life now!” Death is death whether it’s drawn out over decades or whether it’s sudden: like suicide. It’s still death! So I was arguing with God about the time and the place and who would pull the trigger. “I don’t think I can do this! I don’t want to do this! I don’t want my family to suffer through this! Kill me quickly! Find a different way!”
This was the worst day of my life. There is no other way to describe it. The despair is overwhelming. The clouds are so dark I can’t see anything in the horizon. The sun is gone. There is no hope. There is no sunshine. All hopes and dreams of seeing my grandchildren grow up are gone. All plans of retiring like other normal people is gone (I was going to learn how to play golf.) If I’m lucky I’ll barely make 68 and I’ll be 48 in June. That’s only 20 years from now. In 20 years my life will be over, if not earlier. And what’s so crazy about the whole thing is I am in the best shape of my life! I have been working out at the gym and have lost 30 lbs and weigh 177. I do 30 minutes of cardio and workout with the weights for another 30 minutes. In fact, the gym has become my therapy for when I need to time to think and reflect. I leave feeling great. It’s one routine I plan on keeping.
I visited my normal doctor and my cholesterol and triglycerides were a little high but all my other blood work was normal. My prostate was normal. Everything is normal. I was planning for a long and healthy retirement. Now, all that was changing.
I can’t describe the grief I am going through. It is terrible. My mind tells me that I have to be strong for my family. It tells me that I have to show them that I can do this with dignity. It tells me that I have to suck it up and take it like a man. It tells me not to feel sorry for myself.
But my emotions are telling me something different. My feelings of hopelessness and despair tell me that there are no bright tomorrows. My emotions just fell apart, the tears of sadness just came and there was no stopping them. When my wife arrived she could see my eyes swollen and could tell that I was not having a good day. I wanted to go over to my sister’s home and tell her but she insisted we stay home and relax for the rest of the evening. No one knows except my mother, my wife and one of my best friends, whom I have considered as a father all these years. My siblings and my children do not know. I will be sharing it with my siblings this weekend. And I am praying about how I am going to share it with my children. They certainly need to know so they can make the choice of testing for it or not. And they may need to seek some counseling. I know I would have wanted that choice. If they test positive they can still have children, through invitro where they take the HD affected gene out. That is great news.
Now I am winding down on day two of this terrible tragedy in my life. I feel a lot better after opening “the spicket of tears” and letting it out. I also feel better having journaling because it lets me put some clarity to my thoughts and emotions. As one writer put it, “I know not what the future holds, but I know who holds the future.”
“Father, today was the worse day of my life. Everything as I know it is over. I have this terrible and dreadful disease that will eventually take my life and it’s not going to be an easy ending. The one thing I am counting on is that You will be with me. My mind is tired and emotionally I am drained. So I am asking You to step to the plate for me so that I can get my act together. I need You. Amen.”