Today I had this weird thought that maybe people think my whole life revolves around my ALS. Well, around that and around being a mom with ALS, because those are the things that I talk and write about the most. So I’m going to tell you some other stuff that I’ve been up to, because I don’t really want you to think that I write one line a day on Facebook and then kick back, streaming Scandal off Netflix until it’s time to pick up Scarlett at school. I do not do that. Ahem. I do not do that all of the time.

Once a week, I take an Italian lesson with a woman named Paola. Paola comes over and I make her a cup of coffee and we speak Italian for an hour. And sometimes we eat brownies because the lesson is at 9:30am and that is an outstanding time for chocolate. This means I have homework, so at other times during the week (usually the night before a lesson), I can be found studying Italian. Other times still, I can be found speaking to Scarlett in Italian and she can be found yelling “No Italian!” at me.

Last year, I was the co-chair for Scarlett’s school fundraiser. I hosted weekly meetings for the other chairs, and we put on a killer gala that raised a great deal of money for our wonderful little school. This year, I’m thinking it might be too much to co-chair, but my goal is to handle some of the outreach this Fall, focusing on getting corporate sponsors to donate goods or underwrite a portion of the event. Hmmm…just writing that made me think that maybe I should spend more time eating chocolate instead. But seriously, I’ve found that having projects that matter to me is crucial to the realization that I am not my illness.

Also this Fall, a big chunk of my time will be devoted to researching and visiting potential K-8 schools for Scarlett. This involves a master spreadsheet, which makes me feel organized and efficient. But it’s also a tough task. My mind wanders to where Scarlett will be for, say, 5th grade and what her life will look like, and I discover that I’m staring at my spreadsheet through tears. Planning for the future without thinking too hard about it is a challenge. But it’s worth it for something so important.

I continue to work on writing pieces about living with ALS that I want published outside of my blog. Well, I continue to think about working on them. And that’s the first step, right? Or maybe the first step is more caffeine? I get confused about this.

I read in my spare time. And not just everything published about ALS, though there’s that. In case you are looking for book recommendations, right now I’m reading Season of the Witch, a fascinating book about San Francisco’s vibrant history. I recently finished Dear Daughter, an addictive thriller in the vein of Gone Girl. And although I normally read on an iPad, I am also in the middle of a terrific actual paperback by Jincy Willett, called Winner of The National Book Award. The problem is, I seem to have misplaced that book.

There is a daily to-do list, which too often contains a reminder to call my insurance company. I try to keep in touch with people, to varying degrees of success. I make new friends and invite them over. I go out to dinner with my family. I watch Frozen with my daughter, again and again and again. Sometimes I can’t tell the difference between life with ALS and life without ALS.

And, despite knowing better, I occasionally imagine that my illness is a result of me saying into the universe “Hey, I really wish I could just write and read all the time, spend hours each day playing with my daughter, pick projects to focus on that interest me, and be my own boss.” I obviously neglected to inform the universe that I would like to do all of that WITHOUT having a progressive neurological disease, but haha! The universe is such a joker. And you can’t have everything. I don’t need a master spreadsheet to tell me that.

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