When you live as a disabled person with a degenerative disease like I have, you have to come to terms with certain things. One such unfortunate reality is that I know that my life will be shorter than most. Now, that does not mean that I live life like I have an expiration date stamped on my foot. It just means that I am aware that I will not live to be 70, 80, or 90 years old. My body just will not hold up that long. You may think “Wow, that is a little depressing,” but I don’t see it that way. You don’t just measure life by how long it is, but also by how full it is. I would much rather live to be 50 living my life reaching for my goals and experiencing the world, than live to 75 sitting in a bubble waiting to die.
This mindset is why I focus on experiencing as many new things as I possibly can. It doesn’t matter what it is most of the time. If a new opportunity presents itself, chances are I am going to try it. I even have a living document known to those around me as, “The List.” In this document are all of the things that I would like to experience if at all possible. You are probably familiar with the term “bucket list,” but I don’t like that name, because it focuses on the wrong thing. My list has nothing to do with when I die, but more importantly, how I live. Anyone close to me will tell you, this list is long and contains anything and everything I can think of. Some of them are simple and straightforward, like going to Vegas and building a house, and others are a little stranger, like getting my ear pierced and shooting a gun.
One of the more recent items I have crossed off “The List” was to go on a cruise by myself. I wanted to plan my very own vacation and take it on my own, just like any other adult would do. I knew it would not be easy and would take a lot of careful planning, but it was something I had always wanted to do, so I thought that it was the right time to try. It took me about 18 months of planning the logistics and saving money for the tickets, but I made it happen. It was an amazing trip, just me and my nurse. I got to be at sea for 7 days, and I got to explore Jamaica and Mexico. The experience I got out of that trip is something I will have to cherish forever, and it gave me lots of great stories to tell to relive the moments again and again.
There are times, such as the cruise, when some people may think that some of the things I choose to experience are too much of a risk to my health. You may be right, but I do not want to get towards the end of my life and wish I had taken a certain risk or done something I was too afraid to do. Everyone has to find their own balance between having a full quality of life and a longer quantity of life. It is all about finding that balance. To help me visualize this, I often think of my life as a great big bulletin board, which gets bigger the longer I live, and all of the things I have experienced are tacked on to it. When the end draws near, and I am surrounded by my loved ones, I want to visualize that bulletin board being large so I can fit as much onto it as possible, but regardless of its size, it needs to be so full that things are tacked on top of each other, things are falling off, and even more things are waiting to be tacked on but there is no room. I would much rather have that board, than a board twice as big with cork showing through. It isn’t life if you don’t live it.
It is important that you find your own balance between experiencing life and being safe. You may feel like eating a rare blowfish that if cooked wrong could poison you is an awesome, new experience, but I would never do that. That doesn’t mean you shouldn’t though. It is just that our ideas of what a good quality of life and what a healthy balance are differ. We are seeing things through our own “lens”. So long as you get every single experience you can out of your life, that is what matters. On your deathbed, that is what you will care about. You will not be thinking about how many times the Earth went around the sun while you were alive. You will care about the people there with you, and the life story you chose to write.