This past weekend my brother and his family flew to Virginia from Switzerland to visit my parents. They all walked in the DC Walk to Defeat ALS on Sunday, along with a couple of my high school friends. We all agreed that they were mainly going to participate in the walk and not make a huge deal of the fundraising aspect of it because we had all asked our friends multiple times already to give this year. Of course, they still raised a substantial amount of money. I continue to be amazed at the generosity of our friends and family both in terms of donations and in terms of time.
I considered flying up to join them, but didn’t want to give up our Super Saturday in Columbia.
The weekend started with the four of us eating on the patio at a local thai restaurant on Friday night. It’s a little nicer than the average place we take Mary Adair and James, but they are well enough behaved to be taken out in public. We had a nice dinner and kids cooperated as long as there were enough rice and noodles in front of them. Cara even remembered to bring a sharp knife from home for me to use. As we were leaving, an older couple remarked on how well our kids did. Yes, I know we have the two cutest kids in the world, but thank you for acknowledging it. It was a nice end to the night.
On Saturday we went to see Sesame Street Live. James sat on Cara’s lap and Mary Adair on mine, and for 90 minutes they were captivated. James is still telling us over and over again about clapping at the Elmo show and randomly calls out the names of the characters. Mary Adair was thrilled that the letter of the day was “M”.
After heading home and getting in our naps (yes, I partook), we had our second big event of the day. We went to the SC State Fair. I am a sucker for a state fair. I still remember betting on the horses at the Maryland state fair with my father when I was around 13 or so. We were standing around at the track and I said, well let’s just pick horses to root for. But he stopped me and said, no this is only fun if we bet money. I was stunned when we were going to bet real(!) money. I even think one of my $2 bets hit. For weeks I would check the horseracing section in the paper.
Cara and I went to the FL state fair on our first date (yes I am still that classy). Saw a bear show, the worst circus in the world, the fattest pig in the world, pig races, played some sort of bingo game, ate bbq sandwiches. All in all one of the most fun nights of my life. Who knew what was to come… (Our third date was to SideBerns, a great restaurant in Tampa and similarly, this weekend Cara and I are headed to Savannah to eat well. She always comes out ahead after going to the fair!)
Our afternoon at the SC State Fair was slightly different, but still fun. Saw all the animals, including the baby ducks going down the waterslide. James yelled at the goats. “Goat!” Mary Adair was big enough to ride a couple of the rides this year. She is telling people, “I rode all the rides at the fair. I rode the motorcycles and the cars and they went very fast.” We finished it off with a dinner of corndogs and fried mushrooms with a dipped cone for dessert.
On the way home Mary Adair asked if we could go to the zoo some time. So I took them on our regular zoo trip Sunday morning. It was a little cool and we got there right when it opened so for an hour or so we had the place to ourselves. All in all a great weekend.
Weekends like these, with perfect weather, fun events, and lots of time together are actually pretty easy to come by in Columbia. It isn’t the biggest city or the most cosmopolitan, or the hippest, or most progressive, but if you are interested in making the best of it, it’s a nice place to live. I mean where else can you live where when you say “lettuce” to a one and a half year-old they perk up, start shouting “Giraffe, Giraffe!”, and look for a giraffe to feed.
Sure, if you want to discuss its faults, I won’t argue with you. Ask anyone who has moved away, Columbia is far from perfect. But maybe most things in life are like that. There is good and there is bad and you have to decide what you want to focus on. You don’t add them up or put them on some sort of scale, you decide.
Having ALS sucks. Right now its effects are still annoying. I can’t carry two beers at a time at a festival. If Mary Adair takes her shoes off at the zoo or the park, I struggle to get them back on. Thinking about what the future holds is scary as hell both for what having ALS means for me, but also what it will mean for those around me. However, life is great. It’s an easy decision. Life is great.
People ask if I think it is unfair that I have ALS. I don’t know, fairness is not for me to judge. I have never expected life to be fair. Look at my life before getting ALS. Was there anything fair about it? I grew up in a great family. Went to one of the best public high schools in the country. Went to Princeton. Made amazing friends. Lived in Florida close to the water. Met my wife late night at a bar (Q: who meets their spouse at a bar? A: Someone who spends too much time at bars…). A year traveling in Latin America. Grad school at Duke. Married in a beautiful chapel surrounded by amazing people, who celebrated by making it one hell of a party. Moved to SC. Two healthy, amazing kids. That isn’t fair! Life is not fair and isn’t supposed to be fair. You are supposed to do what you can with what you are given.
So am I saying ALS evens the score? Of course not. There is no score. Nothing I did before was good enough to offset getting this diagnosis and nothing I did was bad enough to deserve it. Not even close.
I have hope for a cure or an effective treatment, not because I deserve it, but because I have hope. Because there are people working on things that can make a difference. Because there are incredibly compelling people raising money to make those things happen. Generous people making them possible. People who see areas where they can make a difference and act. Of course all living and future pALS deserve it, but so did so many in the past. Now it is just up to us to continue doing what we can.