Category Archives: Progression

On Dependence

My assistant, Juan, arrives at 8:30am. He helps me to the bathroom, and as he walks away, I can hear him singing a song in Spanish. He played a soccer game the night before, he tells me, when I am back in my chair. He wants to know how my night was, and then he settles in to do dishes. I drink my tea and consider, once again, what it means to have people helping me. I’m reminded of a guest post I wrote on my friend Richard‘s blog. Re-reading it, I realize it is exactly 9 months old. My ALS has progressed, but some things haven’t changed.

In June 2014, when I first wrote about needing help, I was struggling with how to handle my growing dependence gracefully. I still am. Sometimes when Juan or my other assistant, Rochelle, are here to help me, I just wish I could be alone. They are so kind, professional, helpful. But the only help I really want is from someone who can give me back my motor neurons.

Juan takes me to school to pick up Scarlett. He parks around the corner, because when we take a spot directly in front of the building, we have found that the van—with its irresistible ramp—quickly becomes full of preschoolers. They run in and out as parents try to corral them, and the last time it happened, they found a bunch of styrofoam pieces on the sidewalk and brought them into the van, so it could “snow.” I’m pretty sure my own child was the ringleader on that one. Read More>

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

Driving Force

The first neurologist I ever saw was a 2nd-year resident who looked like a high school kid. I’ve blogged about him before; he’s the one who told me he thought I might have ALS after we’d known each other for 20 minutes. He’s the one who told me I might want to reconsider trying for a second child. I wouldn’t exactly call him a bad guy, but I don’t have a lot of fond memories from our time together.

One of the things he told me early on was that everything was going to get harder for me. Walking, stair climbing, driving. I was most concerned about the driving, and I pressed him on it. He assured me that my losses would be gradual, that it would never come down to me getting behind the wheel and being suddenly, surprisingly unable to operate the car safely. Don’t worry about that, he told me.

It’s funny, because it was likely the only reassuring thing he’d ever said to me, and it turned out to be a bunch of crap. Read More>

|Categories: Diagnosis, Doctors, Life, Parenting, Progression | 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