Confronting Mortality

I honestly cannot begin to count the times in my life that I expected this condition to end my life in the immediate future. The whole thing is a continual shift. But it isn't a unidirectional shift, it much more resembles a Rube Goldberg machine as one thing triggers the next.

Some of the steps are minor and go unnoticed. But the major ones all start with a small change that begins to build into some major shift which then the pituitary and body learn to compensate for over time through yet more machinations.

It is just something I am accustomed to. The transitions are extreme shifts in so many things from digestion to hormones, to electrical impulses that control muscle movement. It was very stressful the first few times. After that, when I was experiencing whatever bizarre thing it threw at me, it was hard, but I learned to cope better. I learned to be prepared, and I finally even learned to really enjoy every moment. Even when the pain is at a 7 or an 8 - just focus on everything else because there is absolutely nothing else I can do.

So, now I give my family 100% commitment. If they need something - anything, I don't hesitate or put my own priority first. I simply step up. I ask what they need. I hug them whenever I can find an excuse, and I tell them I love them multiple times a day. This is what I want them to remember. They will all experience a monumentally life-changing event. I cannot stop that, but I can do everything in my power to make sure they know how important they are to me.

I can say it is helpful to set goals. Make demands of yourself. But, the most important thing is to find a way to enjoy every moment. Be there. Be present. Enjoy life. At times, I would retreat to bed when the pain was bad, but I learned how to push past it. Over time, this particular condition basically shuts off blood flow to most of the things that hurt. So, they hurt less near the end than in the beginning. That is one of the keys to the insidious nature of the condition.

How to prepare? Enjoy life. Get your affairs in order. This means a will, a living will, password management, and general organization. Get your stuff organized. Make sure your wishes are known about your family heirlooms. Be as forthright as you can with your loved ones.

For children, I chose to simply not get them involved. Think about your time as a child and how you would feel if you knew one of the bedrocks of your life was going to disappear. In my case, think about how bizarre it would be to tell that child when it was not corroborated by a single medical authority. You simply cannot make that leap. It would be a huge mistake. The child does not have the life experience or maturity to deal with that situation. Adults don't really have the life experience or maturity to deal with that situation. It is a Kobyashi Maru literally and figuratively.

My choice with my son was to make recordings, write letters, send emails into the future, try to raise him to adult responsibility levels a little faster, and communicate my love and respect for him. I literally have hundreds of these that date back to well over ten years ago. I'm guessing some of them are no longer relevant and some are overly emotional, but all of them are more than he would have if I had not prepared. Even this entry is a form of communication to him.

This week will not be easy. But, I'm as prepared as I can be.