Time Out

I saw something interesting this week at Scarlett’s swim class. One of the teachers climbed out of the pool in the middle of a lesson and said to another employee, “I just feel myself getting frustrated.” She wrapped a towel around her waist and walked out of the pool area. A self-imposed time out.

I had a few thoughts as I watched this. The first was to be impressed that she had lasted so long. These lessons go on all day, every half hour, and although I’m sure the teachers get a break, it must be very frustrating to deal with young children in a pool for hours at a time. I personally had a difficult time, on a recent evening, dealing with one child, who was crying because the contents of dinner had been placed onto her dish in the wrong order. THE HORROR.

I was also impressed by the teacher’s self-awareness, and by the apparent arrangement at the pool that would allow for someone to walk out and leave a bunch of flailing four-year-olds behind. That’s foresight. I mean, I assume another teacher got in and took her place, and that the children were not left to fend for themselves. But if anyone had drowned, I’m sure I would have heard about it, and gotten some money back or something. Read More>

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Everything That I Understand

If this blog were a work of fiction, I would have introduced a car crash or a home invasion by now, to keep things dynamic for the readers. Or maybe I would just tell some stories about the arguments that Rob and I have around our ALS lives together. There’s nothing fictional about our fights. But there’s probably nothing truly interesting, either. Every married couple argues, just maybe not about the same stuff. I’m pretty sure that’s a direct quote from Tolstoy.

It’s not.

Let me put it this way. If love and marriage go together like a horse and carriage, which we know they do because of the wildly successful relationship modeled on the TV show Married with Children, then ALS and marriage go together like a horse and something a horse really doesn’t like, such as a staircase or a flesh-eating horse disease. Read More>

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Melting Brain

Sinus infection. Day 6. Incomplete thoughts. Lots of wall staring, and, look, there’s an Amazon box in the corner. Ohmygod, I just figured out the Amazon logo. Just now. The A is pointing to the Z. A-Z. I can’t believe I just noticed that. I am an idiot.

I managed to hang in there for Scarlett’s 6th birthday last week, and then. The sore throat, the stuffy head, my body just let go. I estimate that I get sick like this once a month now. My immune system cracking like an eggshell, exposing my many vulnerabilities. If it turns out that I’m made of nothing but oozing egg yolk, then the only thing to do is chug bright orange DayQuil, with its poisoned candy taste.

Perhaps I’m being a tad dramatic about this.

For days, I’ve been trying to ignore my symptoms, thinking maybe I can will this infection away. Start small, and then use my evasion superpowers against the ALS. Alas, that’s harder to ignore. There have been lots of ALS meetings lately. An ALS TDI Ambassadors call, an Every 90 Minutes advisory board meeting, an ALSA advisory panel call. Everyone is busy, lots going on. Lalala. Still no cure.

But here’s something cool. Read More>

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