Before we left Virginia, I had an appointment with a neurologist that was new to my doctor's practice. She was young, just out of her residency, and full of new knowledge, looking for someone to use it on. After a short time of talking, she told me that I had not YET come to terms with my disease. I disagreed with her, loudly. Now, a couple of years later, I can say that she was right!
I can now say that I am fully engaged with my Lewy Body Dementia. It is forefront in my thoughts and it fills my days with reminders that LBD is here to stay. In the beginning of this journey, I looked at my disease as though I was looking at someone else dealing with it. Now, I see it in the first person. I also used to say; "If you have to have a disease, this is a good one to have, because you forget the bad parts." That is no longer true and I don't say that anymore. I believe this is the middle innings of this journey and the stakes have increased!
I think continuously about the past. Friends, events, places, things I did wrong, and unfullfilled dreams. There comes a point in this journey when you realize, it is over! You have done all that you will accomplish. No more new mountains to climb or challenges to win. Your legacy is already written and the ink is dry.
That's not a bad thing. It is true that I have now accepted the totality of Lewy Body Dementia. But there are some things I wanted to do that I just never did. For instance, I always wanted to be a survivalist. Live on a large piece of property, off the grid, growing the majority of what I ate, making my own electricity, totally independent from society. My thoughts in the evening still go to my concrete house, on 25 acres, with solar and wind mill electricity, no phone, television, computer, or neighbors. But you and I know that will never happen.
Another exceptional blogger who is a caregiver for her husband who has LBD, wrote an early blog about her husband purchasing a new pick up truck with all the bells and whistles! It was shiny, chrome covered, and beautiful. He dented it the first day he had it! That truck was most likely his dream and he was going to fulfill it, at least for a day. I also knew of a retired Naval Officer who was diagnosed with terminal cancer. He always wanted a Corvette. So, he went and bought a brand new Corvette. Drove it home, parked it in the garage and never drove it again. He died less than a month later. But, he had his Corvette.
For someone on a journey like mine, that unfulfilled dream haunts us. Work, family, responsibilities, saving for the unknown future retirement, saving for security, all take precedence over paying for dreams. We work crazy hours, to pay for things we don't want, to satisfy the needs and wants of the ones we love. Most men sacrifice their dreams for family and security. But in the end, I never knew someone who said; "I wish I would have worked longer or harder." In the end, we realize that money does not purchase happiness or security. It does not satisfy our inner needs. It is dreams that fill our thoughts with happiness and pleasure. And even though I will never have my concrete survival home, every night I go there and lock the door before I go to sleep.