About a month ago, Rob and Scarlett and I received a really wonderful visit from another family who is dealing with ALS. This was particularly special, because the woman, Meg Macdonald, grew up in my hometown of Oak Park, Illinois, and went to high school with my Aunt Carolyn. Meg and her family now live in Reno, and she comes to San Francisco for regular clinic visits at UCSF. Meg was also a top fundraiser in the #whatwouldyougive campaign, bringing in nearly 15K.
I’m not always able to get together with the people who reach out to me, but I really wanted to meet Meg and told her I would rearrange anything necessary in order to make it happen. We had a busy weekend, and the only time we could really figure out to see each other was Friday night, right after Meg’s clinic appointment, the first one her 15-year-old son Andy had attended.
Meg, her husband Stan, and Andy arrived around 6, looking much happier than I’m sure I normally look after a clinic visit. We ordered Thai food, drank wine, sat and talked. I offered Andy a glass of wine, because something is wrong with my brain. He drank a soda. Meg uses her phone and a tablet to communicate, and she didn’t have any Thai food, because she eats through her feeding tube. Though she’s only had ALS officially for a few months, she is sadly well-versed in the disease, having lost her mother, aunt, and cousin to it.
It’s hard to imagine living with the shadow of that possibility hanging over you. For me, the ALS diagnosis was a shock, but that’s very different than being left to wonder if, when, where. The stress and cruelty of this simply take my breath away and strengthen my commitment to work toward a cure, whether or not it happens in my lifetime.
One of the highlights of the visit was seeing how sweet Andy was with Scarlett. We grownups talked and talked, and towards the end of the night both kids were snuggled with Otto in his dog bed. Scarlett was on top of the world to have the attention of a cool older kid, and Andy was basically snoozing beside the dog, perfectly comfortable.
Meg has written about our visit as well on her great blog. She notes that we have a lot in common: our upbringing, our writing, our love of running. Our ALS. But our ALS is so different, and we talked about that, too. How can this be the same disease? Meg feeds herself through a tube, whereas I swallow normally but have to be fed because my hands don’t work. Of course, I’ve had the disease for a lot longer, but it is remarkable how differently it presents itself in people, and how difficult that makes it to solve this mystery of what’s going on in our bodies.
We had a great time getting to know Meg and her family, although as always, I wished it was under different circumstances. I wished I was just getting together with my aunt’s high school friend, to hear stories about their antics. I did get a little information in this area, and it is no surprise that Meg described my aunt as “more of a partier.” (Care, she also said you were really smart.)
So my ALS family grows, and Scarlett has now met another kid whose mom is sick. This was a first for her, and she will be meeting more kids later this month in Boston. I think it’s important for us to put ourselves out there and get to know other people who share our experience. Patient to patient, caregiver to caregiver, child to child. No one knows what you’re going through in the same way as another person who is also going through it. Thank you Meg, for telling your story, for reaching out to me, and for making the time to be with us— sometimes talking about ALS, and sometimes just talking about life.
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