It has now been more than a year since I was diagnosed. Over this year my hands have gone from getting tired typing later in the day, or struggling to type normally after working in the yard to hardly ever been strong enough or coordinated enough to type with more than a couple of fingers on each hand. If I type more than a couple of lines I quickly notice relying on one or two fingers per hand. Sometimes that can be tough even. Filling out a form with a pen and paper is extremely difficult. Writing much more than just my signature is a challenge. I use two hands to hold my razor. Scooping food with a fork requires all of my strength and concentration. When I get out of bed or stand up after sitting for a while, I have to shake out my legs to get them to work right. If I’m concentrating on something else, like carrying a drink, or walking to the board while giving a lecture, I walk a little funny. If Mary Adair or James is having a meltdown in his rolling around on the floor, my hands and arms aren’t strong enough to lift them up. But if you had told me a year ago, that this is what I’d be like today, I would have taken it in a minute.
None of these little challenges really impacts my quality of life. There is nothing I really want to do that I can’t. On a couple of snow days and on one of our days of vacation in Birmingham, I had the kids by myself. Chasing them around gets tiring and I can’t change James’s diaper if he wants to fight me, but we did fine. I can still take them to the zoo by myself. As my hands get weaker, they are getting better at taking care of themselves. Mary Adair can get herself dressed in the morning (if she wants to). She can get in and out of her car seat without help (if she wants to). James can go up and down the stairs by himself. At some point he may even be out of diapers.
My progression has been slow this year and could continue that way for the foreseeable future. That is the hope. That helps make things easy right now. My hope is that we will be able to continually adjust to what comes. The other night Cara was fixing supper and sort of worn out from a long week. I was pestering her. Repeatedly asking her silly questions. Trying to see if I could get her to smile (or seeing how long it took before she yelled at me to go find something productive to do). Finally she laughed and asked if this is what I was going to do to her when I lost my voice. Would I just have a computer say the same phrases over and over again to drive her crazy? I hope so. I hope we continue to be a family that laughs. One year after my diagnosis that is still easy.
Now I know we are doing incredibly well. My progression is slow and we are handling it well as a family. Sometimes I wonder that just because my symptoms are minor right now. How will we manage when the horrors of the disease become real? Am I being naïve right now? Probably? I don’t know.
Microsoft released a commercial during the Super Bowl entitled “#empowering”. (http://www.youtube.com/watch?v=qaOvHKG0Tio) It showed how technology was improving people’s lives. It was narrated by Steve Gleason and closed with him playing with his son. He may not be able to walk or to speak, but his son can still sit on his lap and read stories. (http://www.youtube.com/watch?v=JObFlEvc-Eg) He still has the sense of humor to make fun of Rivers when he is showing off for the camera. He still runs a foundation doing amazing things. Technology empowers him to continue to live his life, and seeing that example empowers me to believe I am not naïve to think I can continue to live mine.
One of the most amazing things I have learned this year is that Steve Gleason’s perspective is not unique. There are so many people to look up to. I am not the only one facing ALS. I am not the only one with ALS loving today and looking forward to tomorrow. Chris Rosati delivers donuts (http://www.cbsnews.com/videos/the-great-krispy-kreme-donut-heist/). Gerry Hayden still has his restaurant (http://www.alifestoryfoundation.org/stories/gerry-hayden/).
People in the ALS community were disappointed when the Oscar nominations came out and “Jujitsu-ing Reality” (http://vimeo.com/49352654) didn’t make the cut for Documentary Short. It is about Scott Lew, who was diagnosed with ALS 10 years ago and continues to write movies. He has a quote in the movie, “…it really comes down to your will to live. And why do you have the will to live? Because you love your life.”
A year in, I love my life.