I was diagnosed with macular degeneration in 2013. In the decade since, I have lost virtually all of my central vision, making it impossible for me to drive a car, read a book, or even recognize faces. The experience has changed the way I see the world, both literally and figuratively. The stories I have shared here are about my journey.
Saturday, January 19, 2019
How to live forever
I have no memory of this day. The shot was probably taken somewhere in Italy, when I was between Kindergarten and the second grade. I have no memory, yet I know it was a good time in my life. I know it because you can see it on my face. And I know it because my parents provided a good life for my brother and me. We were not rich. Far from it. Our father was a Navy man. Mom a legal secretary, I think, but that was probably much later in life. We never had the big house on the corner or the fanciest car in the driveway.
We had so much more.
We had a mother who loved us more than any person could. And a father who wanted nothing more than to provide a better life for his children than he had known as a child. It’s a time when I was probably as close as I could be to my true authentic self. I am sure I felt loved, safe, and secure.
I have no memory of this day and very few real memories of even that part of my life although I can feel them inside me. Deep inside. Just out of sight. I can see the shapes and colors. I can feel the memories but there are no details. Maybe a little like my vision today in a dimly lit room.
For so much of my life I lost touch with the young boy in that picture. Life has a way of changing you. Without notice it seems, gone are the days when you feel so safe and secure. Not a care in the world. A complete sense that everything will be fine. They are replaced with a desire, a need, to prove something to your parents, to your friends, to yourself. You change maybe for the better. Maybe for the worse. Who knows, but by the time you are an adult you’ve changed. I think that happens to us all, doesn’t it? Hopefully that’s not just my paranoia speaking.
I think of my children. They had a good childhood. Their mother and I were not perfect parents, but we loved them with all our hearts. I tried to be there for them when I could and to provide a good life for them. Hopefully just a little better than I did as a child. Their mother adored them. They were the center of her life.
I imagine they felt safe. Secure. Like the little boy in the picture.
When they were 14 and 11, it ended abruptly. I will remember for the rest of my life the day we told them we were getting a divorce. My daughter literally laughed. She thought it was a joke. After all, her father was always saying crazy things. No way their world could be coming apart so suddenly. To this day, the memory of her laugh brings a flood of tears to my eyes.
I look at the picture of me as a young boy. I see how safe and how happy that little boy feels. I remember that look in my own children’s eyes right up until that day. Then I think, maybe I wasn’t able to do what my parents did for me after all; provide a better life than they had known. I have worried about how I may have screwed up their lives, sent them on a tangent that would completely derail their future.
What I can see today, is that try as I might, I wasn’t able to. Oh, I am sure they have ghosts in their closet just like all of us. They will have their own self-discovery time in their lives when they will look to reconnect with that young boy or girl buried deep down inside them. Perhaps it won’t be as deep, and they will get there much faster than their father even started looking.
I am so proud of Jonathan and Jen. Their father threw a serious monkey wrench in their lives, yet they are such remarkable young adults. I love them with all my heart.
I hope the day comes when I will be able to meet their children. To see at least a little bit of what their lives will be like. How their parents have provided a life, maybe just a little bit better, than theirs; probably a lot better.
I can’t help but reflect on how hard my father’s life was as a child. I can’t imagine. And all he wanted to do was provide a better life for his children.
Perhaps, in some way, that is what immortality is.
Friday, January 11, 2019
Maybe I am just not a skier, anymore
My wonderful friend Jeff and I were talking about age last night. He is 3 months younger than me yet we have a very different view on our milestone this year. He started referring to himself as 60, six months ago. I am still shocked that I am not 45.
I want to get up and go to work. I want to do what I do. My job isn’t a glamorous one. Certainly not one I dreamed of when I was in college, or ever for that matter. I doubt there are many, if any, that say “boy that’s what I want to do when I grow up.” The job isn’t always the greatest experience but many times, maybe more than most, I find myself challenged, learning something new, being stretched in some small capacity. It’s exciting, invigorating, How could I be 60? I must still be 45.
Every now and then I have to tell someone my birth date and it just catches my breath to say 1959. How is that possible? That’s old. I am not. Maybe all that has changed is my perception of what 60 is. When I was young, 60 was old, far from your prime physically, maybe a little out of touch with current trends or technology. Today I see 60 as experienced, comfortable, confident, less afraid about the small stuff, and maybe more aware of the big stuff.
To celebrate our birthdays, Jeff and I are planning to go skiing today. I like to ski. No, I love to ski. I didn’t learn to ski until I was 40 but when I did I was hooked. I skied every chance I could and every year my skiing got better and I became more comfortable and confident on steeper and steeper terrain. I am a solid intermediate skier. Not the best or the fastest but I am ok.
For the first time, I am not that excited about skiing. What if I can’t see well. I know I will have to ski slower than before. I think I know why I am not excited. It isn’t my fear of being hurt. It’s because I am suddenly aware, that my skiing will only get worse. Right now, I am the best skier I will ever be for the rest of my life, and I am just ok. What’s the point. Better to do something else today maybe.
I have a Harley Davidson Ultra Limited parked in my garage. An amazing bike that I love to ride. Marilyn and I have had some amazing times to together on that bike. It’s for sale. I don’t ride. I can’t or at least I shouldn’t.
Add to the list that I will never again fly an airplane, a passion that I was so fortunate to explore for a number of years.
Jeff asked me the last night, “Have you ever tried dictation when you write? It might help you.” It can be frustrating for me at times trying to find the cursor on the screen or, if I look down at the keyboard for a moment, I am an average typist at best, and then look back at the screen I occasionally get lost. Dictation is an intriguing idea that would help with the physical act of writing.
I can’t do it. Not yet. I have only two rules that I try to stick to when I write. The first is, I write about me. My thoughts, emotions, my experiences. I try hard not to write about others. What can I really know about someone else and besides, my goal is to learn about me.
The second is the hard part. What I write has to be as authentic and as truthful as I know how to be. What I write may not be the truth, but it is what I believe with all my heart. And sometimes, the truth about me isn’t comfortable. So no, I can’t dictate. Not yet. The thought of hearing my words, or worse, someone else hearing them is just too scary. I need to write them quietly, privately, safely if I have any hope of authenticity.
It sounds so silly to write that. I am not going very deep at all in what I write. This is mostly surface stuff. Without question, there is more there. Like an iceberg, you can only see so much. I want to go there and learn more about the iceberg but the thought of it scares me and keeps me from going too deep. What if I don’t like what I see? It is safer to stay on the surface.
But there is so much to learn below.
Maybe I need to learn how to use dictation so I never get to the point where I say I used to wonder what is below the surface.
And maybe it is time to accept that I used to be a pretty decent skier. I used to be very comfortable handling a fully loaded 1,000-pound motorcycle on some treacherous back roads. And I used to be able to fly a plane.
I don’t think that means the best is behind me. Perhaps it is just below.
Let me take a look.
I want to get up and go to work. I want to do what I do. My job isn’t a glamorous one. Certainly not one I dreamed of when I was in college, or ever for that matter. I doubt there are many, if any, that say “boy that’s what I want to do when I grow up.” The job isn’t always the greatest experience but many times, maybe more than most, I find myself challenged, learning something new, being stretched in some small capacity. It’s exciting, invigorating, How could I be 60? I must still be 45.
Every now and then I have to tell someone my birth date and it just catches my breath to say 1959. How is that possible? That’s old. I am not. Maybe all that has changed is my perception of what 60 is. When I was young, 60 was old, far from your prime physically, maybe a little out of touch with current trends or technology. Today I see 60 as experienced, comfortable, confident, less afraid about the small stuff, and maybe more aware of the big stuff.
To celebrate our birthdays, Jeff and I are planning to go skiing today. I like to ski. No, I love to ski. I didn’t learn to ski until I was 40 but when I did I was hooked. I skied every chance I could and every year my skiing got better and I became more comfortable and confident on steeper and steeper terrain. I am a solid intermediate skier. Not the best or the fastest but I am ok.
For the first time, I am not that excited about skiing. What if I can’t see well. I know I will have to ski slower than before. I think I know why I am not excited. It isn’t my fear of being hurt. It’s because I am suddenly aware, that my skiing will only get worse. Right now, I am the best skier I will ever be for the rest of my life, and I am just ok. What’s the point. Better to do something else today maybe.
I have a Harley Davidson Ultra Limited parked in my garage. An amazing bike that I love to ride. Marilyn and I have had some amazing times to together on that bike. It’s for sale. I don’t ride. I can’t or at least I shouldn’t.
Add to the list that I will never again fly an airplane, a passion that I was so fortunate to explore for a number of years.
Jeff asked me the last night, “Have you ever tried dictation when you write? It might help you.” It can be frustrating for me at times trying to find the cursor on the screen or, if I look down at the keyboard for a moment, I am an average typist at best, and then look back at the screen I occasionally get lost. Dictation is an intriguing idea that would help with the physical act of writing.
I can’t do it. Not yet. I have only two rules that I try to stick to when I write. The first is, I write about me. My thoughts, emotions, my experiences. I try hard not to write about others. What can I really know about someone else and besides, my goal is to learn about me.
The second is the hard part. What I write has to be as authentic and as truthful as I know how to be. What I write may not be the truth, but it is what I believe with all my heart. And sometimes, the truth about me isn’t comfortable. So no, I can’t dictate. Not yet. The thought of hearing my words, or worse, someone else hearing them is just too scary. I need to write them quietly, privately, safely if I have any hope of authenticity.
It sounds so silly to write that. I am not going very deep at all in what I write. This is mostly surface stuff. Without question, there is more there. Like an iceberg, you can only see so much. I want to go there and learn more about the iceberg but the thought of it scares me and keeps me from going too deep. What if I don’t like what I see? It is safer to stay on the surface.
But there is so much to learn below.
Maybe I need to learn how to use dictation so I never get to the point where I say I used to wonder what is below the surface.
And maybe it is time to accept that I used to be a pretty decent skier. I used to be very comfortable handling a fully loaded 1,000-pound motorcycle on some treacherous back roads. And I used to be able to fly a plane.
I don’t think that means the best is behind me. Perhaps it is just below.
Let me take a look.
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