Good Advice

Every once in a while I give some thought to some of the advice I've gotten in the last few years, some of the comments which have shaped my approach to living with this disease. There have been lots of them, but only a few have really been useful, really helped me to keep my focus on living and enjoying my life. In fact, there are three which really have made a difference to me.

The first was a piece of advice from my diagnosing neurologist. He said "If there is anything you want to do, do it now. Do it early rather than later." Living in the now, living in the moment, understanding that tomorrow won't be a better time to do something, that every time I do something it may be the last time; this is the only real way to live with a disease where the dream of a future is so clearly smashed in front of you. I'm glad I listened to him. It's lead to some wonderful things in these last few years, things I could never have expected.

The second piece was from my brother, Jim. He said, fairly early on in the game, that if I was going to spend money on something I wanted, do it while I could enjoy it. He noted that as I got worse, I would be able to do less and less, my life would get naturally more restricted, and I wouldn't be able to do as much, so wouldn't need as much money. While the timing has been out a bit, the advice has been spot on. As my energy levels wane, I can't, and don't, do as much. For me, a big excursion is going out grocery shopping for a couple of hours. I don't have a boat anymore. Camping, fishing, and hunting are mostly out of bounds. I spend a lot of time at home, watching TV, not just because I don't have the money, but also because I don't have that much energy for other things.

The third piece of advice was from my friend, Mike. He said "Never put a TV in your bedroom. If you do, you won't get out of bed." This morning I found myself wishing I had a TV in my bedroom so I could stay in bed. Fortunately I didn't have one there, so I got up, not to watch TV, but to get started on some sort of a semblance at activity. Had there been a TV, I would likely still be supine, staring at the flickering light.

There is one thing I wish I had done better. I wish I had had more money when all this started. I wish I had done better in the divorce settlement or saved more money on my own, or was able to work longer while in the early stages of this disease. That way I could travel some more, something I still love to do, something which gives me so much and takes so little, something in which I am truly interested.

But you know what? I didn't. This is where I am. It's not so bad. In fact it's pretty good thanks to some excellent advice.