4 min read

My Response for The ALS Challenge

My aunt had ALS, and it’s hard for me to associate pouring buckets of ice water and Facebook challenges with one of the most horrific diseases I’ve ever witnessed in my life...
My Response for The ALS Challenge
Photo by Major Tom Agency / Unsplash

It’s been weird to see the success of the recent ALS campaign. It’s weird because my aunt had ALS, and it’s hard for me to associate pouring buckets of ice water and Facebook challenges with one of the most horrific diseases I’ve ever witnessed in my life.

I’ve been challenged a couple times to pour ice water on my head. I’m not going to do that, because — personally — it just feels silly and trivial when I think about her and the condition ALS left her in.

So instead, I’m posting a speech I gave when I was 17 years old, at my Aunt Karen’s funeral. Here it is:

Think of a word that, when capitalized, the meaning and pronunciation changes.I’ll repeat that…Think of a word that, when capitalized, the meaning and pronunciation changes.I’m not trying to confuse anyone. I’m just sharing the most frustrating riddle my aunt Karen ever gave me. The reason it was so frustrating was because she literally made me guess for an hour before she gave me any clues. It took me two hours before I got the answer. Believe me, I am not a very patient person, so you can imagine what that was like.Aunt Karen was always asking me questions, always making me think. She never asked normal questions either. Often times, she asked what kind of flower I was, or if I could be a book, what book would I be. She kept me occupied when I was a child with her hysterical lies. One time, when we were up at my grandma’s cabin, she played a tape of classical music and I asked if there were any words to the song. She told me that the words were coming up later in the song and that I just had to wait and listen for them. I listened for an hour and a half before I realized that there weren’t any words.I realize this story might make you think that, as a child, I was an idiot. Well, I can assure you that I still am. But Karen taught me a valuable lesson, which was to laugh at myself. This lesson came in handy when she lead me to believe that there was a pony behind her house named Tony, that I could ride anytime I wanted to. Sadly, I believed that Tony the Pony actually existed, for many years. When I finally discovered that Tony had just been a figment of Karen’s imagination, I almost became upset because Karen had once again proven my gullibility.She brought out the best in me, because she forced me to stop taking life so seriously. When I was about 14 years old, aunt Karen came to meet my mom, my sister and me at a bowling alley. Now, I was at an age where I was embarrassed by anything and everything. I remember my sister and I were putting on our bowling shoes, and my mom said, “Oh, my gosh, look at Karen.” As I turned my head around I was greeted with a teenager’s nightmare. Karen was wearing the most dreadful outfit that I had ever seen. She was wearing black tights with white knee socks pulled up over them. She also sported an oversized sweatshirt and a hat with the following words inscribed on it, “I’m retired. This is as dressed up as I get.” Needless to say, I almost passed out from the embarrassment, but all Karen did was laugh at the look on my face.That was another thing about Karen – she was never embarrassed, and she never lost her sense of humor. I remember when she had just finished chemotherapy for her bout with breast cancer. She came over to our house on Easter, and she hid an Easter egg under her wig.Karen was kind, compassionate, sensitive, thoughtful, funny, and full of life. She loved horseback riding, dogs, books, foreign films, Trading Spaces, and most of all, family and friends. She never understood baseball but she came to so many of my games. She and uncle David drove for two days to Arizona just to see me pitch in my first varsity game.I’m not exaggerating when I say she didn’t understand baseball – she thought the most impressive thing about my pitching ability was that I caught the ball every time the catcher threw it back to me.Something Aunt Karen taught me, and I’m sure she taught many others, was to always enjoy life for what it is. Karen’s strength during two deadly diseases was amazing. There’s a quote by Tolstoy that fits Karen’s philosophy perfectly: “The most difficult thing of all – yet the most essential – is to love life, even when you suffer, because life is all.”I’d like to thank my uncle David for taking such good care of Karen, 24 hours every day. I think everyone would agree with me when I say that he was the reason that Karen lived as long as she did. And thanks also to Jim and Diana, because your daughter Addison was the best medicine for Karen.Do you remember the riddle I told you in the beginning? A word that changes meaning and pronunciation when it’s capitalized? Well, the rule is I have to wait an hour before I give you a clue. But today, I’ll make an exception…The word ‘polish’ becomes ‘Polish’ after it’s capitalized.Karen would be so mad at me for telling you all the answer so soon.