GROWING UP WITH THE ELEPHANT IN THE LIVING ROOM

Initially published March 1992.

I was fourteen when my father was diagnosed with Parkinson’s disease (PD), and until a year ago, I couldn’t have told you the day, month or even year that he was diagnosed. I was oblivious to it all. Certainly I wasn’t the only one who denied his disease; in fact, I’d argued that denial was a major family function for some time. We lived with the elephant in the living room, all weaving intricate trails around, beneath, and over it, until we simply couldn’t do it anymore. Finally the rest of my family had come to grips with PD. I was the persistent one, cutting and twisting my way past that elephant until I couldn’t do it anymore either. It was a difficult time for me. I had questions that I couldn’t ask because I didn’t have the conscious acceptance of them. I want to know what PD was; what did it mean to the body? and the mind? Will he die from this disease? Will my brother or I get it? Is it inherited?

These were things I didn’t think I ever worded in my head but were ever present feelings that I couldn’t understand. I have since looked back and characterized myself as the Fallstaff of the family during those years. I provided the comic relief, if only my own, from serious situations. If the family was together, and something serious would come up, so would a joke of mine. It was my defense, as I wasn’t armed with knowledge, or anything else to help me with the situation. My solution was to drop a gag and exit the room.

Things changed when I started seeing a family therapist. My brother had seen her for some time before I began, so she knew plenty about my family. On my first visit I told her that my life was smooth, I had no problems, and I thought I should have some tragedy strike me to make things fair. Naturally she replied by telling me my father had PD! It is rewarding now to look back and see how far I’ve come since then. That was the time when I didn’t even know the fundamental questions about PD, like the ones I referred to above. Now I am able to deal with questions and problems that aren’t fundamental. For instance, like moving away to school. When I made my decision to go, I was able to discuss my worries about how my father will fair when I’m gone.

Last year I wouldn’t have said anything. In fact I would probably not have thought about moving away, when by just talking to him about it revealed to me that he almost ‘wants me to leave.’ I see my father as a symbol of courage. He continues to work, and instead of denying the disease, he has become heavily involved in the Young Parkinson’s Support Network, making it almost a hobby. I guess if I had thought about it, it would be nothing short of what I’d expect of him. A few months ago I talked to him about his PD, saying I was concerned about him. In a simple sentence that meant the world to me he said, “Don’t worry about me”. Needless to say, I will, but I know that he is going to fight it, and I also know that he knows that he has me on his side. 

“You can never cross the ocean until you have the courage to lose sight of the shore.” - Christopher Columbus