I remember when the neurologist told me that I had ALS and what it was, and what that meant. He said there was no cure. I asked how long I had left, he told me that the typical life expectancy was just 2-5 years. I was in shock and didn’t know what to think, or do, or say. I remember my first thought was, if I only had a few years left, I was not going to spend them working 40+ hours a week, I was going to spend my time with my kids and my husband, my family. After some time had passed, I remember being extremely angry that this was happening to me. I remember talking to God about how unfair it was to have two children and to be told that I would not be able to see them grow up. The more I talked and the more I thought about it, the angrier I got. Until I found myself telling God, NO! Not really no to God, but no to the doctors predictions about my life expectancy. I don’t mean a, no, I don’t want this to happen kind of no. I mean a, no, that you feel with every fiber of your being. I refused to leave my kids and miss out on everything! From that day on, without even realizing what a difference it would make in my life, I just expected to live! I didn’t think about the typical ALS progression. I spent any spare time reading stories about people who had defied the odds and survived serious, and even terminal, illnesses. I kept the positive attitude going as much as possible by finding other like-minded people who had ALS. People who also believed that doctors are not always right. Just because they tell you that you have a limited amount of time left to live, doesn’t mean you have to follow their prediction. People not waiting on a cure, but looking for their own cure. Trying alternative treatments, to help slow their progression and prolong their lives.
Shifting from anticipating death, to expecting to live, was a life altering piece of the puzzle in surviving a terminal illness. It was the most important piece and the first piece in a huge puzzle that I am still working on, and will never finish. But, I feel like I am straying into another topic, so back to expectations…
Expect to live. It will be the best thing you ever do. When you expect to die, you stop planning for the future. You stop looking forward to things. You stop living life, and you start just existing. Existing is not living. It is not enjoying. Don’t wait until you feel better to have a fun and full life. Just like you can’t wait until you retire to have fun, and enjoy life. Don’t wait until you are healthy. Live your life and have as much fun as possible. I’m not saying it will be easy, you can still have bad days, and you may not even feel like getting out of bed, you may not be able to get out of bed, but make the most of every day, every moment. Fun for me is just leaving the house, and going anywhere, even Wal-Mart. Fun can be having my daughter come see me, or a friend. Fun can be working on my blog. Find your own definition of fun, and start enjoying your life now. Even if you aren’t healthy, you can still be happy.
One of Dr Phil’s famous quotes comes to mind, “How’s that workin’ out for ya”? Well, going on twenty years later, I would have to say, pretty well!