Posted by drummer (209.105.134.36) on July 15, 1999 at 21:41:11:
Hello again everyone. I posted earlier today about a couple of impending television interviews that I’ll be doing on Monday. Well, I got a call today from a third news channel. Seems I had scheduled an interview with them for today. The news lady said she was calling to confirm our appointment. I guess I forgot to remember this very important appointment. Anyway, to make a long story short; I did the interview. She brought a guy with a camera along too! I want to thank each and every one of you for your kind words of encouragement to help me make it through this very difficult task. It was not easy. No need to worry though. I was actually able to stay serious through the whole process.
The news lady interviewed a doctor before she came to see me. She talked to a doctor at the local University here. (They have lots of doctors and scientists and stuff there). She said she had a hell of a time finding someone who had heard of Cluster Headaches. I guess after talking to several doctors and scientists she found one that had heard of Clusters. I asked her what the doctor said before she interviewed me. She said he indexed the pain level of a Cluster somewhere around amputation with out anesthesia and abnormal childbirth. I said, “cool”. I didn’t ask her if the doctor was gay or believed in God. I really didn’t care.
I was glad that the doctor explained to the news lady that it hurt really, really bad. This gave me some credibility for what I was about to tell her.
I invited her and her camera guy to my “Cluster room”. I explained that most people called this room a “living room”. I told her that I referred to it as a “Cluster room” because it had nothing breakable in it. Well, except for the computer. I told her that I called the computer my “life line”. I asked her to read the home page from clusterheadaches.com before we got started. She did.
She asked me the exact questions that I thought she would ask. Guess what! Not once during the whole interview did I use the word “headache” or the word “fuck”. I hate the word “headache” so it was easy not to say that. I love the word “fuck” so that proved to be more difficult to control. But; I did it!
I talked about the Trigeminal nerve in my head. How the “tri” part meant that I had pain in three parts of my head and face. I talked about a rusty, metal stake being plunged through my left eye and pushed through the back of my skull. I talked about the feeling of being dragged around the “Cluster room” by an invisible force holding the rusty, metal stake. I talked about a really, really long syringe that was inserted in my left nostril and pushed up until it poked through the top of my head. And last but not least I talked about the saw like feeling against my lower left gum line in my jaw. I told her that I had a really hard time sitting still when all this torturous pain was going on. I told her how I banged my head on the coffee table and the walls and paced and flailed about and sometimes screamed. I explained how my left eye and left nostril would tear and run uncontrollably. I told her that what I just said was my definition of a Cluster attack. She asked why I never called it a headache. I explained that whoever decided the name to be placed on this disease had probably never experienced the pain. It seems to me to be the wrong name for this affliction.
I told her how I had experienced this pain almost every day for 15 years. I told her that I contemplate suicide each and every time that I go through this torture. I explained how awful it was for my family. I told her about the mental and emotional abuse that my wife has endured by my screaming at her to get my Oxygen or my pills and then to get the kids and get away from me. I explained the depression and the difficulty in handling every day events due to the unscheduled attacks.
I explained that until this past January that I had felt all alone with this illness. I told her about how now after an attack I can go to my computer and click a few things with my mouse and find a group of people that KNOW what I go through. I told her that this made me feel better than the past 14 years when I would just think to myself that I was indeed insane.
We also discussed frustrations associated with any disease that is not known. I told her how my doctor and I work together to find treatments for my head. The camera guy even asked me questions. They were both very nice. Well, two more to go on Monday. I’ll let you know if I can keep the “fuck” word to myself again.