I was doing some statistical research on world problems for a pitch deck I’m creating for Target Sands Investments, LLC today. I came across this article. It struck kind of close to home for me. With the Life On Your Terms Project kind of on a back burner while I focus on Twisted Souls Press and Target Sands Investments to raise capital funds so we can actually launch the Forward Progress Program, I’ve not done a lot of talking about the project
I thought I would share the article here. It speaks volumes about what living life on our own terms really is at it’s core. I lose sight of it pretty easily myself sometimes, so this was a nice reminder. In many ways, I’m already there, but in many other ways, I’m still pretty far away. I’m still very close to the why I started all of this though.
My terms were set in 2013 based on a desire to write for a living. I wouldn’t take a regular job as long as I was able to earn money with my writing. I didn’t set number goals, I didn’t really need a lot of money to live on at that point in time. It was still a struggle, but I’ve not had to take on a payroll job.
In 2016, I was diagnosed with a progressive disease known as ADPKD. After that, my terms changed. They were set based on what I believed I would be able to accomplish myself and help as many people as possible achieve their own goals, before the disease takes me out of the game.
It isn’t dying that concerns me. Once I’m gone, the ability to write won’t matter and the ability to help other people will be set and go on without me. If I do things right with the Life On Your Terms Project, anyway. It’s the legacy that I’m building, with the intent to put as much as possible into continuing to help all of you and those who come after you.
It’s the need for dialysis and at least 1 transplant to make it to 60 that really concerns me. While writing isn’t the most physical kind of job there is to do, my ability to sit for long periods of time without getting pain in my back, sides, and every joint in my body is steadily decreasing. My ability to focus and stay on task wears me out and some days I just have to go lay down for a while. The last time my kidneys were checked, back in 2018, I was still at 85% function overall. How much am I going to be able to accomplish when my kidneys don’t function on their own at all?
Based on the prognosis from all the tests that were run, that is the life expectancy that I was given. My doctor cried about as hard as I did when she had to tell me. I had just turned 41 a couple of months before that and we had an agreement that I would follow her recommendations to the letter and do whatever tests she wanted done as long as I didn’t get sicker in the process.
This diagnosis really made the ability to live life on my own terms a necessity. It wasn’t just my kidneys that were already affected. My liver, my lungs, and my blood vessels were all damaged by the disease. I stopped letting them do tests before they got to my heart and my brain. I just wanted to move forward and do what I could while I could.
That meant I was going to have to self-manage my blood pressure and stress levels and everything else from that point on. I had to sit down and really think about whether or not I wanted to continue being a writer exclusively.
There is a lot of stress that comes with being your own boss. I was already aware of and doing a lot of it at the time I was diagnosed, but it was almost all stress that I got to choose. I set most of my own deadlines. I set up and scheduled my own tasks. I made money. I lost money. I took a lot of naps. I dished out a lot of guilt and I was pretty ugly with myself, but it was me. I could handle and adjust me.
So, I stayed with it. Here I am 4 years later. I’ve written and published 11 books. I have set up and run an editing business, a publishing assistance business, a publishing company with it’s own bookstore, a charity, and most recently an investment business to encompass and support all of them.
My stress these days literally only comes from overwhelm from having so many things to promote and market and not really having the energy or time to get to all of them in a day. That is caused more by my own guilt and lack of effort on my part than anything. I’m learning to be kinder to myself and I’ve come a long way. The energy level I just have to live and work with.
The point is when you decide to live life on your own terms, you have to periodically re-evaluate your whys, explore and determine if you are meeting them, and adjust where it’s necessary. It might be your whys need updating or changing, or it might be how you are meeting them. It could be both. You won’t know without really taking a look at it and deciding what works and what does not work for you.