Day by Day, Moment by Moment – Living with MSA

Living with MSA is like rolling the dice. You never know what you are going to come up with and it usually is not the same thing each time. Then, sometimes a third die gets thrown in and everything goes to hell in a handbasket. Some dice produce good moments and some produce really bad moments – but they are just moments. I can’t change those things that are happening, but I can change the way I look at them. I just have to remember to play the cards I am dealt with as much dignity and grace as I can. And, there is one advantage – I no longer feel I have to hang around with negative people whom I don’t like. I can just say “no”.

Having a good sense of humor is helpful, also. Sometimes I get up and can only shuffle (well, I’m up!) and it helps to remember Tim Conway in his “old man” skit. Then, maybe the very next moment, my knees suddenly fly out of my control and I look like a prancing pony that is double jointed. As I said, it helps to be able to laugh about these things.

This disease really is no fun. You truly do not know if you are going to be able to get up, are you going to be able to shift into your wheelchair, are you going to be able to go to the bathroom, are you going to fall (again)?, are you going to be able to speak or to swallow. Can you eat? Can you drink water? Can you breathe? It does no good to be angry or to feel sorry for myself. All that would do is cause me more harm. So, I try to roll with the punches and keep "the rubber side down" (a motorcyle phrase meaning to stay upright). Life is a strange, beautiful, and frightening place full of wonder, awe, fear, and pain. But it is LIFE, and I choose to LIVE a life as full as I possibly can for as long as I can.

I try to emphasize the good moments: to smell a rose, to hear the song of a bird, to read a funny joke or book, to watch a funny movie on TV. All of these distractions can help me mentally survive those not-so-good moments. If the time comes when I can no longer smell, or see, I will try to visualize and remember those pleasant experiences. I will try to go deep inside myself and see what I can do. If I can’t visualize and remember those special moments, I don’t know if I could stay sane. I can’t imagine being locked into my own head with no way to communicate with anyone – no way to escape myself. Then I look at Stephen Hawking. All he can move are his eyelids and that is how he communicates. There are always people who are worse off than I am. I have to keep reminding myself that.

I also try to always have something to look forward to. My husband and I eat lunch out together almost every day, but I try to have lunch with a friend from the City where I worked at least once a week. I have my Lunch Bunch, as well. This is such a close-knit group from all departments – finance to public work to library – but we have learned what we have in common. Most of us would not go out if this was not pre-arranged. I organized it, invited the people, made arrangements with the restaurant and send out emails the Monday before we meet as a reminder. We all laugh and share stories, talk about grandkids (those who have them), and just plain have a good old time. I am proud of myself for putting this group together. One member said this is the only time she meets with other people and this gives her something to look forward to.

In addition to weekly things to look forward to, my husband and I try to have a trip planned in two or three months so I can think of where we are going, look for RV parks to stay in, and enjoy the planning stage. This helps. Knowing that soon I will be seeing something new or different than just the neighborhood keeps me interested in the future.

I am happy with my life now – happy and sad at the same time. I believe I lived life a little more intensely now than before this diagnosis. I take time to study my environment when I am outside – even when sitting out in the back yard. I find joy in little things and appreciate nature in all its glory.