Damn You Mark Zuckerberg

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With ALS so much of my focus is on the present. I think that has kind of always been the case for me, but it’s even more so now.  Puzzles with Mary Adair. Playing ball with James in the yard. Watching them laugh and play and get in trouble together. Sharing looks with Cara when either of them says or does something completely off-the-wall. Sharing nights with her on the couch once the little ones are asleep.  But that is not all.  I am also focused on the present state of my disease. Focused on how well my hands are or aren’t working. How hard it is to lift things around the house or to get the kids in and out of the car. What little things I can and can’t do. How long I can type or hold a drink or how much work it is to open a ziplock bag.  I think ALS really forces me to be thankful of all the “cans”. I can breathe, eat, talk, walk, carry the kids upstairs, walk around the zoo for hours. These are not givens, so I am extremely thankful to have them. Physically life is not too much harder than before. Sure I drop my keys and my phone, and I can’t tie a tie or change an overhead light bulb. Eating crawfish or shucking oysters is a challenge, and that sucks, but life is still incredibly good and will be the same tomorrow.

A few weeks ago a friend posted his 2013 summary on Facebook. It was an automatically generated page of what some algorithm thought were the highlights of his year. I clicked through and it was fun to see the recap. Then I saw a button in the margin. I could press a button and the same thing would be done for me. I sat there and stared for I don’t know how long. Last year at this time I had an appointment scheduled with an orthopedist to sort out the weird things going on with my hands. Maybe I should have had a sense of what was to come but I didn’t. Months later my family’s life was changed. I was diagnosed with ALS. No treatment. No cure.  Good luck. At the start of 2013 I had no idea. One year ago things were different.

Shortly after I was diagnosed, I wrote some friends saying I hoped that soon days would return to being measured by the number of jokes Mary Adair tells, the number of times James laughs, number of kisses from my wife. And by and large they have. There is this huge thing hanging over our heads, but each day is judged based on what time in the morning a little person calls out for us or crawls into our bed, the number of stop choices versus go choices, who ate their supper, how loud did the laughs get before someone got in trouble. We play, we laugh, we love.  It is sort of like when you have kids and within weeks you can’t remember what life was like before. Most days I don’t think about what life was like a year ago, I just know I love today. Facebook’s year-end review button made me think about it. The holidays did in general.

I strung lights up outside and I could barely lift my arms by the end. I thought about stopping, but then realized that if I couldn’t do them this year, what would it be like next year? Not being able to string lights is not the end of the world, but thinking in yearly increments gets scary. Since being diagnosed, we are incredibly thankful that my progression has been slow. But it is still scary. It is still there. Everything good in our lives clearly outweighs it and hanging out at home these holidays has just been amazing. Bike rides, zoo trips, puppet shows, movie dates, Santa, Milo the elf, a quick trip to Miami to see an old friend incredibly happy to be getting married, good food, champagne, sharing it all with someone I love tremendously. But thinking about a year ago or a year from now is not easy.

We spent last New Year’s at a beach house in Charleston with friends. At about 11:45 on New Year’s Eve both kids woke up screaming. Cara and I rushed upstairs and worked to settle them down. By the time we did, it was 12:15 or so. That year’s Dick Clark equivalent hadn’t held up the ball drop for us. We missed the celebration.  Not the best start to the year.

This year we stayed home. On New Year’s Eve the four of us went to the children’s museum for their noon ball drop.  Everyone made go choices and I was able to sneak in a preemptive kiss just so I’d be covered for midnight. We had a quiet rest of the day around the house. Played outside with Christmas toys. James and I played tag. As of 2013, I was still faster. Then we gave the kiddos supper, had a family story time and put the little ones to sleep.  Cara and I got to quietly enjoy our takeout and a bottle of the same champagne I gave her when I proposed. She was asleep well before midnight and the dookies lost, but it still was a night I wouldn’t change. Here is to 2014.


One thought on “Damn You Mark Zuckerberg

  1. Hi,
    You don’t know me, my name is Jennifer Lange I live in York Pennsylvania and my husband has ALS. I read your story…ours is similar as are many if the stories I read. I just want to say I hope your clinical trial went well, I am total agreement with your blog about the criteria for the trials and the emergency treatment piece. We are in a trial right now and I just feel like its a miracle if you can even get in with the criteria. Anyway I just wanted to say I support you and your family! You seem very brave and your family courageous. I feel like so many of us are all in the same boat. I just wanted to lend support. You will be in my prayers. If your wife ever needs to talk…give my email:). Jenn:)

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