ALS is a horrific disease. But, ALS will become what you make of it.

It can be a blessing, and a curse. It can be an opportunity to grow, learn, and live life the way you’ve always wanted, and it can erase all hopes of the future the way you had seen it in a split second. It can test your inner strength, and your physical endurance. It can make you cry, shout, smile, and laugh. ALS will affect you and those that you love. How it affects you is up to you.  Back to What Is ALS?

Curtis’ case was genetic, and thus since 1865, it had taken the lives of many of his ancestors.  Before his diagnosis, Curtis was not aware that the gene for ALS ran in his family, but even once he learned this fact, he still did not believe he was cursed. On a daily basis, though, Curtis and Heidi both experienced moments when they wanted to strangle this disease called ALS. ALS ate Curt’s body. And Heidi watched. But, they consciously decided that the disease would not destroy them. Curt’s case was extremely rapid, and thus time was very limited. Curt lost physical abilities in a matter of hours (of course, the muscles had been atrophying all along, but the shock of not being able to do what he wanted hit him hard). One night he could stand, the next morning he could not. One morning he could still move his fingers enough to control his electric scooter, by that evening he could not. With the help of their community, family, and friends, they kept an optimistic attitude. With a projected life expectancy of a year since the time of diagnosis, Curt and Heidi lived every moment they had. They traveled when an opportunity arose. They bought a puppy. They sat in their garden for hours, just watching, listening, living. They made love whenever they were alone. They took walks, picking up bottles, cans and debris alongside the roads. They were married twenty-two days before Curt’s death. Yes, they were forced to change their plans for the future, but they still dreamed.  Inevitably, they still argued, got upset over little things, but then they would look at one another and realize, as is true for anyone, this could be their last day, their last moment together. Curtis learned to cry. Heidi learned to take better care of her physical being, for so much of her energy had to be given to Curt. Curt learned to notice the little things, and that little things matter. Heidi learned to not dwell on things that you can’t control. And they laughed. They laughed when Curt’s reclining wheelchair tipped because Heidi forgot to put down the wheelie bars (once it was evident that he was OK). They laughed when their puppy, Woo Woo, realized that his father’s bum was bare when he hung suspended in the air in his Hoyer™ lift. They laughed when Heidi forgot to pump the air out of the tube which contained his food, and thus Curtis’ belly was full of gas, as well as nutrients. ALS brought Heidi and Curtis closer, but it also affected everyone they touched.  Many friends, old and new, were drawn to them, some old friends never called or visited. Some people offered their help consistently, others popped in and out randomly.  Through it all, Heidi and Curt learned to take control of their lives, despite the fact that they had no control over the disease. And, in the end, everyone mourned the loss of a wonderful man, an united couple, and a community that had grown, learned, laughed, and wept together.  Back to What Is ALS?