Creutzfeldt-Jakob Disease, Confronting the Ghost in the Mirror.
Posted: Thursday, March 12, 2009
by Mike Fak
http://mikefak.com
I appreciate the feedback on my last article. I received a great deal of e-mail privately from people who did not want their comments in the public domain and I am fine with that. I enjoy chatting whether publicly or privately. For the most part the conversations were about finding a balance between honesty in writing and ego polishing.
I always recommend a writer just be forth-right. No matter what you write, someone will take offense or think you are misguided or an egotist, so dont worry about them. Worry only about your true honest feelings and the results interpreted incorrectly be damned.
I want everyone to know I am not in a dark place about this issue and I don't spend any time worrying about it either. Like life itself, it either is or it isn't. I am too busy writing and working about things I control to be self-possessed with any pangs of mortality looming in my near future. Since we have been talking about writing personal feelings I think this work now has a home.
It was one of those secondary results I had not been prepared for when I had all my teeth extracted almost two years ago. Since I was a baby I have looked exactly like my father. I remember fondly as a grade schooler carrying a picture of dad when he was my age in my wallet. I enjoyed showing it to classmates and having them ask me why I was wearing those funny old clothes in the picture.
As the years went by, I still understood my resemblance to dad, who died in 1983, was as pronounced as ever. I just never saw the complete truth in that until I started looking in the mirror as an older man with no teeth.
My father, who had all of his teeth lost when he was 51, rarely wore his false ones. This appearance gave me my most lasting and prominent visual memories of my dad during those years. They are the ones I carry in my minds eye as I talk to him each day. When I look in the mirror now, I see him as he looked in those later years. When I look in the mirror now, I wonder if his fate will soon be echoed in this twin born 28 years later.
My father died just before the age of 63 from a form of dementia, a neurological brain affliction called Creutzfeldt-Jakob disease.
The insidious disease usually comes on suddenly when a person reaches 60 years of age and moves far more rapidly than normal Alzheimers which can slowly progress for years or perhaps decades. During his 60 th year is when my father first showed signs something was happening to his mind.
At first it was just forgetfulness. Then it was not remembering how to start the great machines he had built at the factory and finally, he couldnt remember the drive home from work.
In 1981, there was little known about dementia and my father, after going to the hospital for the first time in his life, was told there was nothing wrong with him. My dad knew better.
I will never forget the day I went to pick him up at the hospital and asked him if there was anything I could do for him. I remember perfectly how he looked me square in the eyes and pointing to the bridge of his nose told me to go get a gun and shoot him right between the eyes before it was too late. I, of course, told him I couldn't do that. I didnt know at the time it was in fact already too late.
I have often thought of that moment in our lives. I am certain that although I didn't know the hardship my father's condition would bring on my mother and my family, even with such awareness, I still could not have granted my dads wish. But I will always wonder if knowing what would come if perhaps I could have. And may God forgive me for saying that.
My father was the smartest man I ever knew. There wasn't anything he couldn't fix or repair or build without a moment spent on wondering how. He just knew. His mind for detail, his memory, his ability to pull a statistic read a decade before out of his powerful mind made his losing that most gifted organ a harder burden for the family to accept.
In the greatest of personal ironies, it was his supreme gift, his mind, which was now the disease ravaged thing that was taken away from him as he was taken away from all of us.
He deteriorated rapidly after he left the hospital with nothing wrong with him: becoming a walking specter of a man who was somewhere but certainly not in this world.
For a while, for brief weeks or days or moments he was better. It was as if his incredibly potent mind was giving all it could to find a way to repair itself as he could everything else he had ever taken to task But then it got to the point that even this most gifted of minds could not hold back the disease.
For a year my father walked around the house aimlessly, back and forth, his hands constantly in motion. I imagine that somewhere inside his disease wracked brain he was fixing something as he had his entire life. I recall as if it was just moments ago how his brown eyes had gone black and showed no sign of cognizance or recognition. I recall desperately looking into his eyes, trying to see just one faint glimmer of recognition but there was none. If in fact eyes are the windows to the soul, I can tell you that my fathers soul had already moved on.
Finally, after almost a year, he collapsed and went into a fetal position for several months until his body finally said. "The hell with this" and it too gave up.
I wanted to tell you this little story because as I am my fathers son and as I am now over 60 years of age, I find myself wondering if I am soon to meet a similar fate. In 5-10% of cases there is a hereditary link. So the odds are in my favor but one has to wonder. Am I going to be just fine or am I in that small segment that develops my fathers disease. After all, I am identical to him in so many ways: why not with this disease as well.
Little things, like forgetting keys, wondering what I was just about to do and watching as the letters on this computer screen become jumbled for no apparent reason now carry more relevance than just another laugh at human forgetfulness or failing. I find myself now wondering if my time is approaching. I wonder as I look in the mirror if in fact I am my father.
I imagine soon enough I will know. I imagine soon enough you will all know as well.
If you have ever wondered if a persons soul is a tangible thing, I can only leave that for you to decide. Tangible or not, my fathers death has convinced me that the soul is in the mind. I am certain of that for without a mind there is no person and without a person there is no need for a soul. I will always remember the day my father was buried. I will never know the day that he died. I like to think that someday I will be able to ask him that question. I wonder if my son will someday need to ask the same question of me.
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Top-level comments on this article: (6 total)Hi Mike.I think you are probably going about it the "right" way; take each day as it comes, do what fulfills you, and try not to worry too much.For my dad and the cancer that killed him, it was the loss of his mind that also affected me most. He had always been so rational and intelligent (taught himself calculus and went on to teach a course at community college) and to hear him talk about things that were not there and then eventually stop connecting with the outside world at all really hurt. Like your father, he too was no longer "there" on the day his body finally gave up.Rational or not, I have confidence that you will not suffer your father's fate. It would be such a great loss to us all if you did.Most Sincerely,DianneThanks Dianne. I really appreciate the kind words. Not sure about being a loss but thanks.Mike
How precious is life, Mike. I have lost both parents, a brother, and have seen dozens of folks "move on" in my career in the medical field. I have learned, and am lerning, to appreciate every tiny moment and the life therein. Thank you for this profound article.Thank you Ken. I am sure you have seen it all but it looks like you understand what we sometimes take for granted. That has to be a special gift.Mike
Thank you for sharing your deepest feelings with us. I was diagnosed with P.D last year and it turned out to be the wrong diagnosis. I was re diagnosed with Essential Tremors and it too is progressive but not as devastating as PD. I have jnever written anything before I started doing the little stories for Search Warp and have also discovered that I have some artistic talent at the ripe old age of 63. I am living one day at a time and I continually try to improve on my writing and my art. I know that someday the medication I take might possibly quit working but in the meantime I am going to go for the gold and I hope you continue to go for the gold too. We need you and your gentle spirit. For me your encouragement has been such a blessing.God Bless You,Linda DAnd may God bless you and keep you well. Thanks for the kind words. They are truly appreciated.Mike
When we lose our parents and other loved ones to such awful diseases, it is hard not to wonder what our own fate will be.But like Dianne, I have confidence that you will not go this way. Remember your father is only half of your genetic structure.Beside, I talk to you daily, and I know your mind is twisted, but it is certainly still intact!NilaThanks Nila. So far, I believe I am fine but every once in a while the darndest thing slips my mind and you have to go uhoh. So far the lost thoughts find their way back.Mike
Thank you for sharing your experience with Creutzfeldt-Jakob disease and your father's decline. I can strongly relate to the helpless feelings associated with watching a brilliant mind ravaged by this disease. My father died of CJD in 2005. My dad was the smartest man I knew and he could fix anything. I can't imagine what it must have felt like as a family going through this in 1981. I'm so glad that you were able to put in perspective and move on. Our family was pretty well banged up by the medical community. CJD became a reportable communicable disease in Illinois on March 3, 2008. That was 2.5 years worth of relentlessly pressing the IDPH. It was a day after what would have been my dad's 69th birthday. Thanks for deciding to put that article in print. I hope someday to be able to write about it with your sensitivity.Theresa
Thank you so much for this article. I also lost my mother to cjd in 2007. She, too, was only 63. I know exactly how you felt looking into your dad's eyes to see that his soul was already gone. That is exactly what happened to me. I also know how you wonder if it will happen to you every time you lose your keys, forget to pay a bill, etc. We were told it was the spontaneous form and we chose not to be tested. I don't want to know. I wish you well. Thanks again for this article. Lisa Spencer
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