by Amy (April 2004)

This is an English paper I wrote. I thought I should send it to your web site to show the views of a 19-year old daughter to a father that has LBD. To other young kids, you aren't alone.

Take a good, long look at the above picture. I'm willing to bet that you're having a hard time deciding what it is. You might think it's a satellite picture taken of some distant planet, with the swirls and dots indicating alien topography or strange atmospheric conditions. Or, you might think that it's one of those optical-illusion-type things, that if you stare at it long enough, a different image emerges as your mind and eye work together to make order out of chaos. And you would be right. It is in some way, a "magic eye" picture, but not in the traditional sense. The picture is a cross-section of a brain that has Lewy Body Disease.

It is a picture of what is happening inside the brain of my 57-year-old father and a picture of what is happening to my family. I went from not knowing what a Lewy body is, to being educated about them in a weekend. I, like most people, had never heard of a Lewy body. A Lewy body is a round protein deposit, which contains nerve-damaged cells. The presence of a Lewy body disrupts normal brain functioning, and as they multiply, they produce a disease that is like Alzheimer's and Parkinson's combined, which is called Lewy Body Disease. There is no cure. It is relentless. It is fatal within five to seven years of onset.

The picture you're looking at has changed my life forcefully and abruptly. Like a "magic eye" picture, different images have emerged about my life that is different from how I used to see things. For instance, I have a different image of my relationship with my dad, I have a different image of what is important, and finally, I have a different image of the present and the future.

I now have a different view of my relationship with my dad because this disease has caused me to examine it, and with any "magic eye" picture you have to look at it long enough to see what it really is. I used to think we were so different, and it was insulting to me to think that we were alike in any way. But I am proud to say now, I am a lot like my dad. For instance, when I set my mind to do something, no one could change my course. Dad was like that too. We also both like to be right and are not afraid of an argument. Those similarities alone caused a lot of clashes during my teenage years-- two people fighting for control. I wish I would have known then what I know now. A lot of that arguing may not have happened. It is ironic how we both fought like lions for control over silly things-- like whether I could take the car or go to a concert.

Now there is something in our lives that neither of our headstrong ways can change or control. Like I said, I always knew he felt just as strongly about things as I did, but since he has learned that he has a disease, he has demonstrated to me a different kind of strength. He is not willing to just give up. He is not like that. I once denied our similarities because all I could see was how wrong I thought his views were. Now I have an image of how we are alike, how we share drive and determination, and I am not insulted, I am glad.

Another image has emerged from that "magic eye" picture of Lewy Body Disease. If I had to draw it for you, I would probably draw a picture of a sieve. This disease works like a sieve, allowing me to capture what's important and let other things drain away. You could say that the "magic eye" effect of this disease has revealed to me a striking contrast between things that are silly and things that are important. Lewy Body Disease has taught me not to sweat the small stuff.

As I stare at the picture of Lewy Body Disease, a different image of the present emerges from me, but unlike a sieve I cannot draw it for you. What is a visual symbol for having a deeper appreciation of the here and now? How do you draw the futility of trying to stop time? The Lewy body picture you're looking at is a static one. But in real life, Lewy bodies cannot be frozen in time as they are in the picture. The truth is, they will multiply and as more Lewy body cells appear, my dad, and the person he was, will disappear. I would like to stop time, but time always moves forward.

When I tell most people about my dad, they usually say, "Well, at least you have a lot of time left with him." When I hear that, I want to strangle the person who is speaking to me. Their sentiment seems glib to me. Worn out sayings like "seize the day" and "the present is a gift" are not lost on me. My image of the present consists mostly of having a deeper appreciation for it. I have to consider that there will be a day when he will not know me and will not be able to recall how we fought or why. I am glad for him to be able to forget the times when I would get mad and say, "I hate you!" But, I will be truly sad for him to forget any single time that I ever said, "I love you." Here in the present, he knows who I am and that I love him. I appreciate that.

Finally, as I stare at the "magic eye" picture of Lewy bodies, images of my future emerge. I imagine pictures of me and my family at my wedding, with my children, and in so many other snapshots, but everywhere that my dad should be I see an empty space. Before Lewy bodies came into my life, I had typical expectations for the future-- finishing college, landing my first "real" job, getting married, and having children, to name just a few. But in all of these, the presence of my father was always assumed. I never dreamed of a wedding without my true dad walking me down the aisle and I never considered that he would not be there to hold my babies on his knee. I feel like I have been cheated out of a part of my life that is very significant. The vision or image I had of the future has been forever changed.

Now take one last look at that deceptively beautiful picture, its abstract swirls and pleasing varied shades of purple. What do you see now? That image is something that has changed my life, how I view it and how I will live it. I try my best not to regret the past, to appreciate the present, and to not think too far into the future. But like my dad, I feel that I too have the disease. I am forever bound to Lewy Body Disease.