They say ALS is a journey. I am almost three years into my journey. I am one of the lucky ones.
ALS does not control my days. It did at first. Every time I went anywhere, I wondered if that would be my last time. I tried to enjoy every holiday, thinking I might not be around the next year. I soaked up volleyball, basketball, and softball seasons, worried I wouldn’t be able to go the next year. I really feared I wouldn’t see my oldest grandchild graduate from high school. I went from walking with a cane to walking with a walker to not walking at all – hence, a wheelchair.
Somewhere in that first year, I started reading autobiographies of people who were not worried about dying from ALS; they were figuring out ways to LIVE with ALS. They challenged themselves, set goals, made plans for the future, cleaned up their environments, leaned on their families and friends, and, most of all, trusted God. I, too, am learning to live with ALS and to enjoy life.
A couple of weeks ago, I learned that the 10th graders were reading the novel Tuesdays with Morrie by Mitch Albom. I had read it years ago and kept my copy because it was so inspirational. It is a true story about Mitch Albom going back to visit a college professor who was dying from a disease that he had been close to in college, but had not seen in 16 years. I remembered Mitch learned valuable life lessons as he visited Morrie every Tuesday, but I had totally forgotten that Morrie had ALS.
I got my copy of the novel out and started re-reading it. This time, it took on a whole new meaning. I decided to email the teacher to see if she thought the kids would like to meet someone in Mt. Vernon who has ALS and maybe do a Q&A session. It took a while to hit “send” because I have never really talked about my ALS in an open forum. She quickly responded with a gracious “yes.”
I had a couple of weeks to think about what I could do. I have lost most of my voice, so I couldn’t say everything I wanted them to know. Ms. German sent me a list of questions they had, so I typed out answers to each of those that could be read aloud. Then I decided to make a slide show with some photos to explain how my ALS started and how I have had to make adjustments.
The students were surprised that my ALS was quite different from Morrie’s. He was affected in his legs and arms, but he could still eat and talk. Mine has affected my left leg and my throat muscles, so I still have use of my hands, but have to eat a special diet, and it's very hard to understand when I try to talk.
Even though I was very nervous for the first class, Ms. German and the students made me feel right at home (I spent over 30 years in a classroom teaching). They were very perceptive and kind, and they asked excellent questions. My two 10th-grade granddaughters were there when I talked, and they were very good at repeating what I said so all could understand.
At the end of the slideshow, I told the students that my goal was to help raise awareness about ALS. They encouraged me by sharing what they had learned. Ms. German was very knowledgeable, and even though we are probably 40+ years apart in age, we found we had several things in common.
So I still go to special events. I still enjoy family gatherings and holidays. I am still a regular at football, volleyball, basketball, softball, and baseball games (usually with my sidekick Champ – a very smart mini sheepadoodle). I saw my first grandchild graduate from high school and proudly wear my A&M T-shirt. And I am still in my wheelchair – my symbol of freedom and independence.
Now I just enjoy the moment. I don’t worry about where I’ll be next year. I just focus on how I can make a difference today.
