Coffee. Coffee. CO-ffee, co-FFEE, coffeecoffeecoffeecoffeecoffee, COFFEE! COOOOOOFFFFFFEEEEEE.

That’s a song I wrote today. The tune doesn’t matter.

I haven’t had a cup of coffee since January, but this weekend there was a delicious cold-brewed jar of the stuff in a gift bag from my niece and…nephew-in-law?…waiting for us at the hotel. I tried some of it and it was good. Like, really good.

Now, I’m back home and I have that funny feeling that sometimes accompanies the end of a vacation. I’m happy to be back, but when Rob and Scarlett left this morning, I had a moment of sadness. We had a great trip together, and it turns out I’m just not sick of them yet. So I made coffee. And then I wrote my song. You have to do a kind of jazz hands thing at the end.

This blog is supposed to tell the story of what it’s like to live with ALS, but my inclination is often to gloss over some of the harder times in order to keep things light. I can’t deny that daily life is getting more difficult, and travel really highlights that fact. For weeks, I was nervous about the flight, because I knew I wouldn’t be able to get up and walk to the bathroom. So I did the thing that many people with ALS do when a bathroom trip is out of the question: I dehydrated myself. Not great. At the end of the flight, I had to pee anyway, and I was grouchy about it.

I’m very recently in a place where I can’t even use a handicap bathroom stall on my own if the grab bar is on the left side. Which it was, for 5 days, in our hotel room. So Rob had to pick me up every time I was done using the toilet. Also not great. My friend and fellow Face of ALS Brian Fender confessed in a recent Facebook post that he and his partner of 21 years never used the bathroom in front of each other until ALS forced Brian to give up his privacy. That’s a tough thing, perhaps one of the toughest things about this disease.

Other typical activities grow challenging, as well. If I was forced to do it, I think I could still get dressed by myself. But it’s easier when Rob helps me. Same thing with showering, so I don’t do that alone anymore. Rob and Scarlett both helped me put my earrings in at various times this weekend, when my fingers just wouldn’t push the backs on.

These aren’t complaints, just facts. I can’t blow-dry or straighten my hair. That means Scarlett and I both went to get our hair done before the wedding. There are a couple of ways that you could look at that—it could be sad and depressing that I’ve lost this ability. Or it could be sweet and fun that we get to visit the salon together. I choose the latter. Just as I choose to think that showering with my cute husband isn’t exactly the worst thing that has ever happened to me.

We had such a good time in Lexington. Scarlett was a wild woman on the dance floor. All four of her grandparents were there. The night after the wedding, when the rest of the family had headed home, the three of us got to have a very special dinner with the newlyweds. My life is full of happy moments. But the other stuff is part of the reality that I promised to share, and it’s not all that pretty. ALS progresses. That’s its job. My job is to make sure it doesn’t take all of me down with it.

Important status update: The coffee experience has gone bad! Numbness and tingling in my fingers and general breathless panic, induced mainly by a faulty smoke alarm that has been going off ALL MORNING. There is almost nothing that has made me feel as helpless as this horrible device that talks and is yelling at me “EMERGENCY! THERE IS SMOKE IN THE MASTER BEDROOM!” and I’m so high on caffeine that I start to smell smoke and get lightheaded even though it is incredibly obvious that there is no smoke. After FIVE HOURS of this happening at random, torturous intervals, I finally calmed down enough that it occurred to me to call the company that makes the alarm and they were like “Yeah, this is not the first time we’ve heard that. We’ll send you a new one.” So it’s back to tea for me tomorrow. It’s sad, though, because tea has never inspired an impromptu song.

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