Guest Post: A Letter from Kristen

This letter came to me last week, and I had to ask Kristen if I could post it. Read it and you’ll understand why.

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Confession: I feel super awkward writing to someone I don’t know. This is the first time I’ve ever done it, and I wish it didn’t have to be because of ALS, but here we go. ALS is making me do things I’ve never done before, and I’m not even the one who’s got it.

I’m Kristen, from Canada…living in England…with my German husband. At 40, he was diagnosed with ALS. Lower-limb onset. Slow progression. That was about a year and a half ago.

Most people can remember the exact day of diagnosis. I can’t. We had a 3-year-old and 6-month-old twins. I was so utterly sleep deprived that I can’t tell you anything about that day, other than I was convinced that my husband was absolutely fine, and didn’t even go to the doctor’s appointment with him. That’s how confident I felt that he was dealing with a quirky neurological situation, rather than a diagnosis with a “life expectancy” attached.

I hate that day, whenever it was. Read More>

|Categories: Diagnosis, Life, Parenting, Relationships | Tags: , | Permalink

A Day at School

It was a big day here yesterday, which you would have known if you’d seen me, because I was wearing lipstick. Like, actual lipstick, not just the bacon chapstick I slather on daily. In case you think that was a joke, that was not a joke.

Do I lose credibility immediately upon admitting that my “big” morning involved volunteering for the Carnevale party at Scarlett’s school? I just thought the children would appreciate that bit of extra makeup effort. I also wore a multicolored beaded necklace for them, because I am nothing if not festive. Although I am evidently not as festive as one of the other moms there, who was dressed head to toe as Queen Elsa.

I have always been the kind of mom who wants to be very involved at school, but after ALS sat me down for good, I was certain my classroom volunteering days were over. I normally just watch the email requests go by, thinking I won’t be helpful, best to let someone else do it. But last week our room parent sent a note saying she still needed help, and instead of blowing it off again, I thought, well, why not me? Read More>

|Categories: Life, Parenting, Progression, Vanity | Tags: , , , | Permalink

Lies We Tell Ourselves

Odd but true: adapting to life with ALS requires forgetting some of the details of life before ALS. I know that my body once knew how to run, how to climb a flight of stairs, how to chop an onion and stir it into a sauce. But now those actions seem so beyond me, they are nearly unrecognizable as functions I once performed.

The closest thing I can come up with to describe this a bit more generally is the experience of giving birth. After Scarlett was born, I was smitten and amazed, but I was also honest. Childbirth had been horrible. Literally, that is the word I used to describe it for a few days, until my body somehow sloughed off most of the memory, filtered it through a baby powdered light, and returned it to me, all soft and desirable. I know there was pain, but that’s a theoretical knowledge. In reality, I thought, it wasn’t so bad. I could do it again.

The point isn’t that childbirth is terribly painful and everyone who thinks it isn’t is kidding themselves. The point is that our bodies (or maybe just our brains) adapt. Read More>

|Categories: Life, Progression | Tags: | Permalink