Category Archives: Vanity

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

Assisted Living

There comes a certain point in ALS progression where you start needing the kind of help that you probably haven’t needed since you were a small child. People preparing food for you is one thing, and it can actually be quite luxurious at first. When I lost my ability to cook, I hated it, but I also felt so appreciative when a hot meal appeared in front of me, the result of someone else’s efforts.

However. People bathing you, lifting you on and off a toilet, carrying you into bed, those are the things I believe Lou Gehrig was talking about when he called this disease “infantile paralysis.”

I took my last unassisted shower in September. Just last week, I completely lost my ability to transfer and use the bathroom alone. Privacy has deserted me…and I have helped it along by sharing that last bit of information on the Internet.

Rob and I received a piece of advice from our midwife after Scarlett was born. She told us to respect the baby. This meant to talk to her and tell her when we were moving her, when we were dressing her, when we were pouring water over her head in the bathtub. At the time, I thought it definitely made sense, but I wasn’t sure it mattered much to our chunky little monster, who was generally being cooed at and kissed so much that she probably thought we were trying to eat her. Read More>

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

Life on Wheels

It’s Wednesday morning, and there’s a man in my kitchen. I’m usually home alone until about noon, but today is different, because Sal has come to patch up something like 60 divots and gouges throughout our recently renovated house. We were not attacked by starving woodland animals, nor was this the result of drunk Christmas tree decorating or anything to do with the resident 4-year-old. Let me explain.

In 2013, it was getting really hard for me to climb stairs. We lived on the second floor of an old Victorian in the Haight Ashbury neighborhood of San Francisco. One flight up to our door, another flight up to our home. As my legs grew weaker, it became clear that we needed to move. But there we faced a different kind of challenge: finding an accessible place to live in San Francisco, city of hills, multi-story homes and steep staircases. We were still searching when I lost my stair climbing abilities entirely. Rob carried me up and down two flights, every day. Over and over.

Finally we found a home that fit our needs. Read More>

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