It was interesting that I got some comments back on the post about dignity. For me it was cathartic to write. Since I’m an “old softie,” I found myself tearing up while writing it. We are all raised to think that it’s a parent’s job to take care of the children, not the other way around. There are so many mixed feelings running through your head while it is happening and it’s difficult to sort them out. You are proud that you raised a child willing to do it yet embarrassed, angry, sad, etc that it has to be done. You want to go out everyplace and do everything but are often afraid that there won’t be a bathroom that you can use or that there will be no one available to help you. So here you are a grown man who had a successful career and raised two kids now centering his life on the availability of a bathroom.
When I get thinking this way, it’s really easy to fall into a deep funk, feeling sorry for myself. It’s then when my number one caregiver Linda comes along, “smacks me on the head” and snaps me out of it. She gets me to look at the things I have and not what I’ve lost. The two beautiful grandchildren top that list. Being home and getting to watch them grow and learn is an amazing experience. To them, it doesn’t matter that their grandpa is in a wheelchair. In fact, their friends are jealous that they get to ride on the back. Usually, one is on my shoulders and the other is on the back whenever we go anyplace. It’s an experience that I would never have had if it were not for my condition. I also don’t have the constant angst and tension that I had when I was working. It’s a good thing not to have that tension ball in the middle of your gut 24/7. It was tearing me apart. Oh, I have to include getting to spend more time with Linda. Our kids call us “the Bickersons” since we always seem to be arguing about something but ours is a very special relationship. You hear so many stories about people retiring and then getting to live only a year or two together before one of them passes on. MS has actually given me a present by allowing us to spend more time together.
This list could go on forever. The point is that whenever you feel yourself falling into that funk, put a list together. There are things to enjoy that perhaps you never would have if not for the disease. Sure there are some crummy things too but there is always the other side of that coin.